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Ibrance 75 mg

Morning ladies

I’m just curious to know how many of you are on 75 mg dose?

I’m fed up of feeling weak and tired

I’ve gathered that the low dose is as effective but want to know what you’ve experienced

I’m thinking of requesting the lower dose or do you think that’s silly?...

barb xx

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that's what I'm going to ask for right off the bat; that or nothing but letrozole until they have something better, or verzenio, as I read it doesn't have the blood clotting properties. at least that's what I think I'll say when I get to the onc appt. If 75 mg. is just as effective, why would I want to take more? God bless you and heal us all in Jesus name, amen! <3

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Exactly

Barb xx

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Hi Barb,

I was initially given and still take 75mg of Ibrance. When I was diagnosed my tumor markers were 400 now they are at 19. My last scan showed no progression and my tumors are shrinking. I still experience some fatigue, it's most evident at the end of the 21 day cycle.

xo Jade

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Wow that is amazing! Congrats Wintervt!!!!

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Hi Barb,

Sorry to hear you are still having a tough time with fatigue. I think you should definitely ask! Only you truly know what your body is feeling and I know as patients we leave everything up to the doctors, but we have to remember to advocate for ourselves! They don’t know everything. Only God does! Remind me again how long you have been on the combo? I am ending my 3rd week and just had labs yesterday and my wbc and platelets are slightly below the norm. I am curious to hear what they say. Also, someone just told me to eat beets and drink carrot juice! Once again, going back to things found in nature. Hugs! LeeAnn

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Hi Leanne

Been on combo 10 months

Barb xx

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Hi Barbteeth, I’m on 100mg and initially a rest period of 1wk but my onc allowed me 2wks rest now. I feel good when I am active and when I feel the tiredness I just have to rest otherwise I get exhausted. Feel better try B-complex...

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Hi there

I do take Vit B12 tablets and folic acid with my iron

It’s just the Ibrance I’m sure

Barb xx

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Barb, I could not tolerate ibrance at high dose— felt very weak like going to pass out. I am into my fifth cycle of ibrance 75- have much fatigue but push through it. It upsets my stomach so I take it with dinner. Much more tolerable and just as effective. 💕🙏🏻

Frances

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Hi Frances

That’s good to know

Thank you so much

Barb xx

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Barb. I’m on 125 but I’m a breast oncology nurse and I can tell you that many of my patients are on 75 and feel better. They are all doing great progression free and a study has shown that it’s just as effective. I have tolerated the 125 but only on 3rd cycle. I would say you should go to 75.

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Hi

Thanks for that...reassurance from someone like you does help as so many of us have our opinions but they’re sometimes not correct..me included!!!

Barb xx

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That is so great to hear! I want to go on 75mg as well. Would you happen to have the study that shows the effectiveness of the 75mg? I'm seeing my oncologist next month and want to discuss it with her. ❤️

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Thank you! I saw this study. I misunderstood...I thought there was a study on the 75mg. Maybe that'll be published soon. ❤️

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Yes it was comparing the 125 to 100 mg...we need to know asap!!!

Barb xx

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Yes I agree Barb. ASAP is right. There should be some preliminary (6-12 months) statistics out already.

And also statistics on two week on two week off!

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It would be fab if we could all thrive on 75 mg

Barb xx

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Yes the study is going from 125 to 100. There are none yet looking at 75 but many people are on 75 and doing just as well with disease free progression. The oncologist I work with never starts at 125. Always starts at 100 and many are doing great on 75. My oncologist starts at 125 but it’s important to have quality of life.

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Morning Barb. I'm still on the 125 mg dose but I don't think it's silly at all for you to be an advocate in your own care. Any oncologist's first goal should be giving you the best quality of life and only you know how you feel. If you have access to a printer perhaps print off and take the article(link below) showing the potential efficiency of the lower dose and go from there. Good luck.

Sandra

targetedonc.com/news/reduce...

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Oops!! Didn't see your response with link! Thanks a trillion!❤️

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Been on Ibrance for 2 cycles just started my third . No results from it yet. Fatigue remains the same but horrible bouts of diarrhea have lessend. I see that it has worked just fine for a lot of people. Hope it will work for you as well. Best wishes

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Thank you

Barb xx

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I was 6 cycles at 125 and now had 4 at 100. I am so tired and all the time can’t function. I asked my doc about the 75 but he has it in his head that is better to stick to the 100 even though I have to have 2-3 weeks rest for my levels to go back to a safe level. I really want to try the 75 to see if it will ease up my tiredness. Taking b12 and a good multi vitamin but it doesn’t make a difference. CBD oil has helped a little with energy and with joint pain but I would have to drink a bottle a day to get rid of this tiredness.

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Well I’ll ask at my appointment with oncologist about lowering to 75 mg

Barb xx

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What dosage of B12 do you take? Does it have folate? Could you share the brand. Thank you!

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Quality of life is important also. I just could not handle doses of 125, then 100- I told my doctor I cannot do it and what good is it if I cannot function? I refused to take it for a while then in November 2018 scans showed increases in activity and more growths. I was honest with him and told him I would take it but at 75 and see if I could tolerate it. He agreed. The faslodex was not enough anymore so now it’s ibrance, xygeva and faslodex. I have chronic fatigue but I can function now. This is just me and how I dealt with what you are going through when it was me.

Love

Frances

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I say go for it!! My onco said he will give it to me, but only because i asked!! And the blood clotting issue for letrozole is only 1 percent.

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Well I’ll ask..I think I should have a say in the treatment

Barb xx

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You do but they dont want to do it because the docs and hospitals have to account to pharm. company why you are going down. If you have extended wait time between dosage than they can justify by saying you have to keep in pattern, etc. So, figure a way around it! Maybe even by saying you are having nose bleeds or cannot get out of bed, etc. Insist and they should at least let you try.

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Oh I was unaware of that..just assumed the oncologist was in charge of the treatment dosage

Hmmm

Barb xx

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Keep in mind, as well, the ONLY medication doctors get a kickback from is chemotherapeutic agents

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Dies make you view things with a wider eye

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I just never knew..that’s awful

Barb XX

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Of course onco can change meds but he has to account for why and give an explanation that they buy. So if you have physical complaints you can’t live with that should make the difference

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This is why they give us a hard time about reducing the dosage

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All is becoming clear now

Thanks for that info..just never crossed my mind

Barb xx

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It is your body and your life. I say push for whatevr you want to try and feel in your gut is best for you. No one knows your body, but you. How bad can it be to try a lower dose? I have been sort of casually asking and getting the same resistance as the rest of you. I went harder this month and said that is what I wanted to try and he gave me a song and a dance and then said that he would be willing to prescribe that and he could justify medically. What a bunch of crap. I will insist when I get back on Ibrance. Make up symptoms if you have to. You do what you believe is best for you!1 Listen to your body and your energy, etc. Nose bleeds work. I did serviously have continual nose bleeds when I began Ibrance 125mgs. And this week, my doc was saying."there is a small percentage of patients that get occassional nose bleeds"> I said mine were NOT occassional. I stopped that nonsense in its track.

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I'm sorry but it sounds like perhaps you do not have the best relationship with your oncologist. Mine would never speak to me the way you mentioned and or question the authenticity of what I feel. As for making up symptoms just to get what you want well that just seems counter productive to me. Probably the medical system is different where you live but I'm in Canada, my oncologist certainly has some limitations as to what drugs are covered etc when prescribing but I know for a fact her decisions of dosage are based on what is best for me and not to get a kickback from any pharmaceutical company. I'm just stating my own opinion and I don't doubt what is going on in your experience but it is definitely not the same everywhere.

Sandra

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Thank goodness for that!! And yes, each country is different and each doctor. I do no longer have the best relationship with my oncologist and am not sure exactly what I plan to do next but I do need to make a change at some point.

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Definitely. You deserve the best and one that's in your corner. Good luck.

Sandra

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Thanks Sandra! I feel a bit guilty asking for a new doc at the same institution but it is the best in our region. I am not sure how to navigate this right now. I will talk to some people a the hospital that I like next time and see what can be done. And then the worst part is I hate his new nurse, PA, and she thinks she is all that. I told her I did not need her to examine me this past week--I mean seriously, WHY?? If she were a med student, resident, etc. I would have zero problem. And she often tells me that what I say I want the doctor won't like! Then I tell the doc and he says, well if she said that I won't like it, etc. One of the nurses told me all his patients hate her and said they would change their doctor if she stays. I totally, agree and I am not normally this way. I think I annoy him because I do not fit the normal profile of MBC patients, and I research alot and ask alot of questions and have my own mind. Most women just come in and say, what do I do and thank you. That just isnt' me and never will be.

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Never be ashamed of being an advocate for yourself. I know it can be tricky when all the physicians are part of the same team as they tend to stick together. I would be in the same boat at my institution and am lucky that I couldn't be happier with my oncologist but if I didn't feel comfortable with her she would be replaced. It's funny that you mention the dislike of your oncologist's nurse. On the 2nd visit with my oncologist (I think I was too numb on the 1st visit to care) I decided that her nurse was not for me. Nothing I could really put my finger on and she seems to be liked but we just don't click. I do realize I may have a different relationship with my oncologist than most having worked professionally together but I told her I didn't want her nurse, nor any of the residents etc and she abides by my wishes.

Never change who you are to blend in and not create trouble. This is your future you are navigating and you would have to live with decisions made. Take care.

Sandra

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Not ashamed I just feel bad asking to change him. I can easily say I don’t want the nurse. I have had this onco for 18 years. He now 75 and I think I’m his way out and just not the doctor he used to be. After so long I just feel bad for him for me to say I’m

Displeased. I did do just that with him about 2 months ago and things have just gotten uncomfortable since then

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Gotcha, that is a tricky one. Maybe he'll retire soon and make the decision easier for you. I'm sorry though it is causing you unnecessary stress. Hope you find a way to make this work. Thanks for sharing.

Sandra

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I told him what he said to me they made me feel bad and that I believed he did not want to be that person. I guess I wish he had said he was so sorry that was hurt etc but he didn’t and I cried . It was painful but I knew I had to tell him

What I felt by his comments even if he did not mean what I thought he meant. I told him what the stupid nurse said to me and he said he would be upset with the nurse if she said what she had said, but somehow I’m certain he did not say anything to her. But more importantly, he didn’t support or believe me. I guess that is when I began to feel not supported

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Yes I think like with any relationship when you lose trust it is hard to gain back and the road ahead becomes Rocky. So sorry. In my opinion from what you have written your feelings are very warranted. Hang in there.

Sandra

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Blms

I just had the same experience with my Onc nurse. I called and told her I was very out of breath and she said

“You dont sound out of breath”! Every other time I called she would just recommend I go to the ER. I was beside myself. I have a Doctor so I don’t have to sit in the ER for 5 hours with all the germs etc. I mentioned it to the PA and she said others had complained as well. They moved her to a different department. The excuse was that she was a nurse for a long time... It’s just my opinion but if you can’t be kind and compassionate, maybe it’s time to retire. I’m sure it’s not an easy job but I’m nobody’s punching bag.

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yes agreed!! I had a bad experience last night, not sure what is up. Heart racing, then dizzy, flashing in eyes, BP tanked, cold sweats, etc. Lasted about 3 hours total, not all symptoms for that long. I decided to play it out and not go to ER. Was fine for another 4 hours before bed. Slept fine, got up to pee 4 times as I wanted to check my stability. Today, going to my opthamologist to get that part checked, then to GP for additional testing scheduled. My husband asked if I called onco, I said no but got very emotional with the question. Something has to change with that! the emothions were not that of cancer to brain, but more of I don't want to call him. Guess that is telling me I need to change this.

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Same! When I told the PA I was in tears. With everything we go through, this is one that should NEVER happen!. I didn't go to the ER either. Stress for no reason. Now I just email my Onc on the portal. It goes directly to him and he has to respond. Its my new way of doing things. Go to the source.

I hope everything is alright and your exam comes back normal. I had some "spells" similar to yours. My bp was very high though. I get ocular migraines but this one was different. They said from the bp. My eye exam was normal.

robin xo

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Interesting! Just left my eye doc and he thought ocular migraines. At gp now, ekg normal waiting fir her.

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Oh man i can totally relate! My oncologist also got a new nurse who is awful! Honestly cannot stand this woman! I hate her smug attitude and her unsympathetic replies! I am going in friday and i am demanding 75mg! I have worked for surgeons and hospitals and your correct, big pharma drug kickbacks happen all day everyday, naive people think otherwise and i am in the USA, maybe in countries where socialized medicine is the norm this doesn’t happen but i can assure here it does happen.

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Yes, 100% that happens here in U.S. and naive to think not so and believe everything to doctors are required to tell us. Bottom line is that we need to listen to our bodies, research all and be our own best advocate! Not easy ladies, MBC is not for th weak, what a ride we are on. So, where do you live?

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I live in Idaho recently removed my local idiotic oncologist from my life after lying to me about my CT scan in October telling me it looked great, i take the CT to my oral surgeon due to xgeva related oestnecrosis, he says did you know your cancer had progressed?!?! i literally had a panic attack, and now utilizing my oncologist at Huntsman in Utah (her nurse is a complete moron). It seems I really cannot catch a break.

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Always good to get a second opinion! I do that with every scan now.

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Very important and reading and having the entire report explained and double checking on our own!

I don’t take any report at face value, i line by line read and investigate everything and if i get any weird vibes or ‘glossing over’ i run!

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I guess so

Barb xx

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I’ve been on three cycles of 125mg and couldn’t tolerate it- was in bed for almost a week. I’m 45 with two young children so that’s no good! I’m about to try 100mg. I wonder if weight and height had any bearing? I’m quite small so wondered if that was any correlation as to why it hit me so hard. It was truly grim!

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Hi I have 2 young children too. How are you coping? I have completely fallen apart! When were you diagnosed? I’m small as well, struggling on the 100mg, first week is okay, I have asked twice to reduce but she said no x

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I have a feeling I won’t be allowed the reduced dose either..I guess this drug is relatively new so long term effects and studies aren’t known..we’re the first generation of taking it..guinea pigs in a way but lucky(!) to have it

However we need to function and enjoy life

Barb xx

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I totally fell apart for about three weeks whist on third cycle of Ibrance . I couldn’t even do basic tasks like get the kids to school or cook and was crying all the time.

I was diagnosed March 18 and have had mastectomy chemo radio and they found. Low volume mets to my spine unfortunately- was gutted. But latest scan shows no growth and shrinkage.

However I’m off the Ibrance 9 days now and feel amazing. I’m about to head off to an overnight hen do with friends. I can’t Believe how quickly I feel me again.

I know I’ll need to try the lower dose but I had no quality of life on 125mg. Also feeling so low how can you be positive about living with cancer? Eat healthy or do exercise- all of which I believe helps fight cancer too.

And my kids were really distressed seeing me so weak. I looked horrific and felt like I had a permanent hangover.

I have had induced menopause so know that’s also impacted me too but nothing like the strong Ibrance

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Sounds like you are coping really well. Mine had spread all over my bones and lungs and liver so I’m a bit worse than you. I still can’t get my head around living with cancer. The uncertainty with the children is too much to bear. I’m on antidepressants and have just increased the dose so all my fears are heightened at the moment X

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I know the fear is horrific and really it’s a door I can’t open.

I’ve seen a psychologist and that’s helped - plus I sought out a private second opinion, a nutrionalist and enrolled in exercise programme ( I live in uk) so that I know I’m doing all I can.

I have also heard so many positive stories of women living with this for years and Being able to see their children grow up.

Don’t give up hope!

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Where do you live? I’m in Dorset. It’s so beautiful here, I thought it would cheer me up but I’m so sad I’m even envious of the happy looking daffodils! Ridiculous!!! X

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This is me...nothing makes me smile at the moment although I bought some hollyhock plants yesterday which is a start..I used to love shopping and clothes but I’m not interested as in too much pain to traipse round shops

I live in Nottingham..we had a holiday in Dorset not long ago..before this catastrophe..stayed near the Golden Cap hill..forgot name of village but so pretty

Barb xx

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Hiya

I’m going g to stop this citalopram..had enough..I’m so weak and tired and it’s the only thing that’s different..took my blood pressure when got back this morning and it was really low..systolic 105.. no wonder I feel sick tired and crap

I’m unable to function

Barb xc

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Do you think it’s the Ibrance though? X

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No as the only thing that I’m taking that’s different is the Citalopram...been on Ibrance 100 for 9 months..I want to drop that to 75 mg as well...just feel overmedicated and not like myself...horrible

Barb xx

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Me too. I feel like my mind has shut down x

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Hi Barb.....I know I sound like a mother hen but you see your oncologist Monday right? It's likely close to that where to live....only early Saturday morning here. Stopping antipsychotic/antidepressants cold turkey is not a good idea. I know you think you couldn't possibly feel worst but just be careful. Take care.

Sandra

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It’s my GP I’m seeing Monday..I just want to go through the meds I’m taking..painkillers antidepressants

The cancer drugs I’ll discuss with oncologist

I won’t just stop the citalopram although I’m on the lowest dose

I just want to feel human

Thanks for your good wishes

Barb xx

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Barb

I know we are in different countries but I had to try quite a few antidepressants before I found one that worked with no side effects- it is lexapro. It is a drug known to have few s/e. You have to find the one that suits you and obviously the one you are on doesn’t. Be firm with the drs- it is our treatment and quality of life and we have a say in it💕

Hope it gets changed and you feel better🙏🏻♥️

Love

Frances

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Hi Barb, did you stop the antidepressants? And did they reduce your dose to 75mg? I hope you’ve had a positive day Xx

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I have taken it for years and have not had these issues. Since I started Ibrance I have extreme fatigue and dizziness. I blamed the Ibrance but perhaps it is the two of them together. I see my family doc on April 11 and I’m going to ask her to switch me to a different antidepressant.

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I think it’s the combination now you’ve said that but difficult to know

All the best

Barb XX

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I am so sorry. How old are your children? It is so awful, almost surreal at times...

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5 & 8. I know I just can’t believe it has happened to me. My aunt and my mum both survived and I only made 2yrs. I was so sure I had beaten it x

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Awww sweetheart, we ALL thought we had beaten it. We were told we were “cured” only to have it come back (in my case 13 years later). So scary. The fear and dread is the worst part. Hopefully, as time goes on, we will find the peace we need to accept what we cannot change.

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Thanks. I just wish I’d had 13yrs. My family has only just started. The diagnosis has blown my mind X

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It still seems unreal tome too. I have a book recommendation: Radical Remission. Also, check out the website: radicalremission.com. Uplifting.

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Thank you. What are your coping strategies? Thanks for chatting x

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Frankly, wine...

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I’ve missed my wine...now off the citalopram and heavy duty painkillers..going to indulge!

Barb xx

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I’m now trying to cut back. Since the dx, I’ve upped to 3 glasses/night. Not good. Just feeding the cancer.

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I don’t agree with that sugar feeding cancer theory..our bodies make glucose from protein and fat so eating carbs or no carbs makes no difference..obviously I’m not suggesting eating rubbish and boozing all day but a balanced diet veg fruit high quality protein etc and a bit of wine!!

Life’s for living and enjoying

Barb XX

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I hear you but I am a believer in the sugar/cancer connection.

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Honestly I wouldn't worry about the sugar feeding the cancer aspect and don't get me wrong as I do love my glass of red wine but be careful of having 3 glasses a night. It is hard on the liver and your liver is already having to work harder with our treatments. If you don't want to cut back try mixing each glass half and half with soda water or something. Sorry you are your own person and can make your choices but I wouldn't feel right not at least making a comment. Thinking of you.

Sandra

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You go girl!

Sandra

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I have heard so many people mention that book here on the board. I'm going to have to give it a read. I'm not into radical diet changes but from a quick look that's only one chapter but I'll borrow it from the library and give it a go. I'm an avid reader and with so many people mentioning it there has to be some message in it that I will enjoy. Thanks for the recommendation.

Sandra

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Hi Sandra

It’s the only book I found helpful..my opinion!!..have read a few others which I frankly didn’t agree with

Barb xx

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Thanks Barb. I've reserved it from my library and it should be here in a day or two. Your opinion does mean something to me...I'm looking forward to it.

Sandra

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I have that book..bough it when just diagnosed..helped

Barb xx

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I’ve been on 100 mg about 9 months and was coping ok..riding my horse and going for short walks

Now I’m exhausted have hardly any appetite which probably makes me tired and feel nauseous a lot..I just feel unwell and look horrible

I’m going up to see my horse this morning but doubt I’ll have the energy to ride him which upsets me as it’s been my hobby all my life..totally fed up

I don’t know if body weight affects it..I’m tall but only weigh 9 and a half stone

Barb xx

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I’m 5ft 8in and 7st 8lbs can’t seem to gain weight x

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Gosh I’m the same height and look too thin..I’m usually about 10-10 and a half stone and size 10-12

You’re very light..I’m big boned though so weight can vary a lot and still be healthy

Hope you pick up

Barb xx

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I have been putting on weight which I blame the Letrozole for along with having no mobility due to my hip and fatigue. I swear I’m the only person with cancer that gains weight. People just look at me and say you don’t look sick.

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Well I’ve spent most of my life on a diet and struggled with weight...now I’m too thin and wish I was cancer free and obese!!

Barb xx

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Hi Sarcie,

I am getting tired of hearing that!

I think this goes along with the common cancer stereotypes that people still have. People expect us to be bald, skeletal, and permanently neutropenic. They don't expect us to look healthy, dare I say "normal" or maybe carrying a little extra weight! So unless you are having chemotherapy and people can see "evidence" of cancer, I do feel that metastatic breast cancer is an invisible illness.

Sophie x

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I agree with you Sophie. I’m tired of people giving me that look. Like many other illnesses you don’t have to look sick to be suffering. Although the dark circles under my eyes should be a clue.

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Nope I gained too from the faslodex and ibrance💕

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Thanks. I don’t feel so bad knowing it’s not just me.

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You are definitely not the only one. Like many of us I lost weight when I was first diagnosed and started treatment. However since I started feeling better and changed my way of thinking I guess (living with cancer instead of dying with cancer) I have gained weight too. Personally for me I know it's because I'm just not as active obviously a) I don't work outside the home anymore b) my husband is a chef and cooks fantastic meals that I now enjoy again c) winter was brutal here so other than short walks with my dog I didn't get out much. Too afraid of falling on the ice and fracturing something else. The Letrozole probably plays a role but I have decided that I can't use that as an excuse....I need to move more. However spring has sprung, I feel physically better and my bone pain is very controllable. I had repeat CT and bone scan yesterday so I certainly hope that comes back stable to reflect how I feel but as we all know that is never a guarantee. With better weather for me comes more walks, gardening, bike rides and I can hardly wait. Take care.

Sandra

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I had a hip replacement in October due to my bone Mets and like you scared of falling in the ice. Now that spring is here I’m hoping to get some walks in. I haven’t been eating nearly as much but I seem to be blowing up like a ballon.

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Sometimes we as ladies feel like that but when you actually get on the scales it doesn't reflect. If you take pain killers(opioids) they can certainly also contribute to weight gain. Maybe try adding some small hand or ankle weights when you go for the walks...building muscle really helps but for us with bone mets it has to be safe and buildable. Good luck. We're all in this together.

Sandra

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I didn’t know that about opioids. Learn something new everyday.

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Yes it's weird actually. Opioids cause the body to have a preference for sugar and alter the glycemic index. When prescribed for chronic pain in people who are financially ok and not suffering from malnutrition they tend to gain weight.

People dependent on illicit opioid drugs for non pain related issues are underweight- this is a result of poverty and malnutrition rather than a pharmacological effect of the drug. If you are spending all your money on the drug, you have less to spend on food (or accommodation, health care etc). These are usually the people you see in homeless shelters, on the street etc. It's a hard vicious circle for them sadly.

Sandra

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Nope, you aren’t the only one. I blame the Letrozole too.

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We can’t win. I would like to drop a few pounds but being alive is also important so weight gain it is 😉

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I would love to lose weight but I know it’s from the meds. I eat half of what I used to but am growing sideways lol. I am also 65 and not as active as I used to be- doing home nursing care pediatrics. So plump it is then💕

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We will all be plump together. ❤️

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weight and height are not supposed to have a bearing but I find that hard to believe. MOST people cannot tolerate the 125. 100 is much easier to deal with. Push it.

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Barb,

The 75mg is worth a try. It is said that tthe lower dose is as effective! So why not feel better!

It helps our emotional health to feel better physically. So why not!

I wish you well in your decision. Love, Marianne

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I am on IBrance 125 mg and letrozole, I believe most of my side effects are mainly from the letrozole. I have been a BC patient since 2005 with a new diagnosis in 2014 in the left breast. You can read my journey if you like.

I was diagnosed in June with MBC with Mets to my lymph nodes in my Bronchial tree. Yes I am weak and always tired, but since I’ve been on estrogen blockers since 2006 I seem to have the same issues.

Just sharing my experience, I will be on both on April 10th for nine months.

I’m 66 in April and live a lone, I only manage to drive to the office 2x a week since my ride is 45 minutes each way.

I hope this helps

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I am. Fewer side effects (still get neutropenia, but not every month) and just as effective as higher doses. Good luck, hope you feel better.

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Thank you Mary

Barb xx

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You're welcome. Let us know how you are doing.

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I’m on 75 and it’s still too strong bc my platelets drop too bad. So I’m doing two weeks on and two weeks off. The platelets dropped but not as bad after 2 weeks. However I’m supposed to start back tomorrow and can’t bc they are still too low. They have to double before Monday. If this doesn’t work we are going to one week on and one week off. It’s so frustrating. I only made it 3 weeks on 100 and almost had to have transfusion and took a month to get them back up was hoping 75 would be the key but it’s definitekt better on my counts than 100.

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Whole things a nightmare

Barb xx

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Truth

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I’m on 75 but I still feel tired and I’m on day 3 of my 7 days off. My platelets always drop so maybe that’s why I’m still tired.

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It’s so tough trying to function..

All the best

Barb xx

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Not on 75 yet ..was on 125 for 6 months now on 100mg since March ..but felling more tired on lower dose ..told onc but he said never heard off that .but they are not the person on thisdrug . so how can they tell you something like this . will see how this dose pans out . then maybe 75 will be my next dose. ..

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Every time I tell my onc something they tell me well it can’t be the meds. They say you better go to your family dr for that.

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I was on 125 for 18 months. I got tired of being tired. I requested to go to 100. I’ve done three cycles at 100, but I may go to 75 if my neutrophils don’t rebound enough this month. I spent 2 days sleeping, 2 days in a fog on my week off. I feel a 2 week break may be even better. I see them this Thursday.

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Hi Kathy

I’ll be interested to hear what they say

There seems to be quite a lot of ladies on 75 mg...seems the oncologists are unsure of what to prescribe

Barb xx

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I’ll let you know

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I am on Ibrance as well. I am in the middle of my 37th cycle on 100 mg. Only my first cycle was 125. I continue to have very low WBC counts and low hematocrit and the fatigue is rough for about 10 days-- usually starting on about day 18 til I start up again- Day 1. My onc keeps asking if my quality of life is ok or do I feel a need to drop to 75. But as I say to him-- can you show me stats on 75? So far studies are only on the drop from 125 to 100. Until then, I will power thru my days and then rest a lot-- and some days that is a lot of resting. I pick and choose what is important to me. I have been battling BC since '96-- and MBC since 2016. I am 63 have 4 kids- the youngest was in Kindergarten when all this started...13 grandchildren and want to enjoy every moment I can. so for now 100 mg of Ibrance and a lot of resting those rough weeks will be my life and I plan to enjoy it all !! praying for all my MBC sisters !

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Your oncologist seems concerned about your life quality

Mine just tells me what to take!!

I wonder when any stats will be published as I want to reduce dosage but there’s a little voice saying don’t

Barb XX

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I've been on the low dose for 2 cycles and I am still weak, dizzy and tired. No improvement and like you, I'm fed up feeling like this.

Patricia

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Hi

Was your oncologist reluctant to lower your dose?.. they seem to differ in their views

Barb xx

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Hi Barb. My ONC wasted to time in changing my dose from 125 to 100 and now 75. I just dont think I can tolerate this med. My legs are giving out, dizziness, unbearable fatigue, and dizziness. I am tired of falling ending up with black eyes when I fall on my face and bruises all over me. No quality of life. I have a Pet Scan and MRI scheduled this coming Friday.

Patricia

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I’ve gone from 125 to 100 to 75. Feeling a lot fewer side effects. And my latest scan shows that there’s no progression and I’m improving. I think quality-of-life is very important on this journey. We don’t have to feel weak and sick and tired all the time. Talk to your oncologist.

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Thanks Gwennie

Barb xx

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Hi Barb,

I'm not on Ibrance, as you know. But I would have a serious conversation with your oncologist about how you are feeling. Your quality of life is just as important as keeping the cancer under control. I remember when I first met my oncologist. She was often going on about "quality of life" and at first I didn't really know what to make of it. It almost felt like she was letting me have my pick of a sumptuous feast as my "last meal" before the death sentence was carried out (Morbid, I know. But it's the best way I can describe how I felt!) But then it finally clicked that she was interested in how to make my life and symptoms manageable so I could still live my life and not feel ill. She achieved that, as I have felt very good physically since last summer, and the disease is under control, so it wasn't like I had to pick one over the other. I achieved both. You need that too. What's the point of having stable disease when you feel terrible physically? That needs to be addressed. I hope you start to feel better soon.

Take care,

Sophie

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Wise words Sophie

Barb xx

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Hi Barb!

Thanks! How are you feeling today?

Sophie ❤

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Morning Sophie

Still dossing in bed...disgraceful behaviour ...Marmaduke (my ginger cat) is keeping me company ..his fave spot to sleep recently is on my dressing gown ..sweet

I feel quite good today so far..had my hair extensions done yesterday so that was a distraction and went to see La Forza del Destino live from Royal Opera House...it was superb

In the interval though I bumped into one of my patients...nice lady and she was asking me how I was enjoying my retirement and about my horse etc...so I just said I was fine and thought ‘if only you knew what I was going through!!’...putting on a normal face but much more preferable to putting up with the ‘look’ when people know what’s wrong with you

My car was leaking petrol on the drive yesterday...chap over the road called the emergency gas leak people so we had drama..flashing lights etc and all that...no gas leak but I don’t fancy driving with an inflammable liquid leaking all over..anyway car being seen to now but I’ve no transport so think I’ll have a quiet day

How are you ... I always read your lovely posts

Barb xx

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Hi Barb!

I'm pleased to hear you had a lazy morning in bed with Marmaduke and that you are feeling better. He sounds like quite a character. I bet the trip to the opera was just what you needed.

I know what you mean about not going into detail when you see people you know. I am normally like that too. Talking about "normal" things can help us feel like we are like everyone else. Then the focus isn't on the disease, but on us as people.

Good grief! I'm so sorry to hear about your car. I hope you get it back soon. Being car-less is not much fun!

My dad had cataract surgery this morning, so it has meant lots of juggling to fit everything in. His surgery was scheduled for last month, but it got cancelled at the last minute and he had it today instead. As the surgery was at 7:00am, we had my brother stay over last night so I didn't have to get up so early, but I still did!

I was going to get my brother ready and send him off to his day care this morning (he has learning disabilities and autism) but I got a call yesterday from a member of staff saying today was a staff training day. Argh!! Another change to factor in! So then I thought about taking my brother with me to work. But my husband offered to take him with him to the hospital and then they went shopping while they waited for my dad to be discharged, as it was market day. I took advantage and gave my husband a list of things I wanted from the health food shops and market! Would you believe my local health food shop doesn't stock kombucha or essential oils?! They have a lovely selection of bread, nice healthy lunches and "Meet up Mondays" but not much else I am after.

It meant I could still go to work and not have to worry about keeping my brother at arm's length (as one of the dogs is really nervous of other people and it would have been difficult watching my brother and the dog at the same time). They are all back home now and my husband has gone back to work, as he didn't need to take the full day off as sick leave. It's nice how he can use sick leave for family members, and not just for himself. So I am off for the rest of the day and have my brother over with me while my dad rests for a few hours.

I hope you are enjoying your day,

Sophie x

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Hi Sophie

You are a busy bee🐝

Why don’t you get your essential oils from Amazon..I got some and they’re lovely..they do boxes of assorted ones quite reasonably priced..in fact I’ve bought them for pressies for people when can’t think of anything to get them

I’m in bed now with Marmaduke!!!.. been to the cinema to see ‘At Heavens Gate’ about Van Gogh.very good and from a different perspective..his mental illness..bit depressing!!!

Barb xx

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Hi Barb,

I was busy yesterday, but thankfully I am back to normal today! My husband took my dad's keys off him yesterday in case he is tempted to drive anywhere. He is not allowed to drive for a few days. I have offered to take him shopping and to pick up my brother's medication tomorrow, so we shall see what he comes back with. My dad is doggedly independent, but still needs support if that makes sense.

I'll have to look at Amazon for essential oils. Thanks for the tip! I normally just get them from health food shops. Are they cheaper on Amazon? I use lavender (£3.45), organic eucalyptus and lemon ( both £3.95) and frankincense (£9.45). I think the frankincense is a rip-off, but I use it every day. It's probably because it's considered the new essential oil on the block and is popular. I apply it topically to the affected breast, and I also alternate between lavender, eucalyptus and frankincense when running an Epsom salts bath. I add a drop or two of the lemon oil in my first pint of water of the day.

It sounds like Marmaduke loves cuddling with his mummy. Jack is perched on my lap at the moment. The film sounds a bit depressing! I love period dramas. The Keira Knightley version of Pride and Prejudice is my favourite!

Sophie x

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Sophie I get my essential oils from Amazon too and they are good quality. I don't apply mine topically but use them in a diffuser and love them. So soothing.

Sandra

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Hi Sandra,

Thanks for the tip. I was thinking of getting a diffuser and diffusing lavender oil. I bet the smell would be amazing!

Sophie x

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Yes it's lovely. I usually have some scent going during the day. My hubby isn't particularly fond of the smellies I use so I generally don't burn in the evening. I do scented candles then with ' normal' scents as he says...lol. I am thinking of getting some essential oil roller balls as well in the near future.

Sandra

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Hi Sandra,

That's funny! My husband is a bit like that too. He doesn't like things to smell too "girly". A friend gave me a potted lavender plant last year. It is looking very lush at the moment! By the way, I just bought several essential oils on Amazon for just £16.66! The frankincense alone was 1/3 the price of what I paid in the health food shop. I couldn't believe it!

Sophie x

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I am on 75mg so far so good. I will know more after my pet scan in May. 🙏

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I’ll be interested to hear about your next scan..have you had the dose reduced gradually or always been on 75

Barb xx

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Gradually! Of course I am nervous an anxious about the scan. We all hope for good news. Stressful!

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I hope it’s goid news for you

Barb xx

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Thank you Barb.

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HI Barb, I did not last long on the higher doses on Ibrance. My ANC (neutrophils) would be too low to continue. Was concerned on a lower dosage and its overall effectiveness. So far it's been 14 months on the lower 75 Mg dose and my cancer has not progressed. I recall at the higher dosage, I would sleep 9 + hours at night and take long afternoon naps. The lower dose did help a lot. I still can sleep 8-9 hours at night but no more afternoon naps.

Good luck with your decision.

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Hi Barb

That’s so encouraging that there’s been no progression on the 75 mg dose...yes I sleep about 10 hours but don’t often nap...I’ll see what my oncologist says at next appointment..I think maybe my iron infusion has helped a little bit but not as much as I hoped

Barb xx

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Hi Barb,

I’m on 75 . I couldn’t tolerate 100. This is the first week of my 2nd cycle. I still feel fatigued but maybe worse today because my DH and I went to a concert Saturday night. I was surprised at how well I felt. It’s the first time since dx we have gone out late. Today I’m exhausted but it was worth it. I expected more energy than this on 75 because the first cycle was so easy. We did go out for an early dinner but I’m so fatigued I’m shaky. I hope your feeling better soon. xo

Robin

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Not silly. My doctor move me from 125 to 100 and now down to 75. Seems to be just as effective. I still get eggs and pains about the day 15 but much less than it was. Anything for a little relief. You are absolutely not silly

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Aches

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Haha that made me smile...eggs?.. thought you’d started ovulating then for a minute!!!..sorry my sense of humour no offence meant

Barb xx

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