Off Ibrance: After struggling with... - SHARE Metastatic ...

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Off Ibrance

LouisaMay
LouisaMay

After struggling with neutrophiI levels for an entire year on 125mg Ibrance, I finally got them to reduce the dose to 100mg. After one month I had an appointment with my onc a few days ago - neutrophils 0.7! Worse than ever. (And I didn't even take the last three capsules). His words were 'This drug is doing you as much harm as good, your neutrophils seem to be uniquely susceptible to it and that has knock-on effects'. So I'm off it!

I feel enormously relieved. This is the right decision for me. I am on three monthly hospital visits now, letrozole only and a denosumab injection every quarter. It feels like a great weight has been lifted off my shoulders. My sister-in-law, similar diagnosis and identical meds, has no problems with her neutrophils. Different strokes for different folks! Happy Sunday everyone xxx

109 Replies
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Hi Angela,

I'm sorry to hear that you struggled with low neutrophils for so long while you were on ibrance. I don't have any personal experience of ibrance, as I have always been on letrozole, zoladex and zometa. So low neutrophils were never an issue for me. Hopefully your levels will soon pick up and you will feel better.

Enjoy your Sunday too!

Sophie

LouisaMay
LouisaMay
in reply to SophSP

Hi Sophie, I know you have felt resentful (and rightly so!) at not having been offered Ibrance. I can only say that, whilst I didn't have much in the way of side effects that I was aware of, I always had a gut level dislike of this drug and am glad to be shut of it! My life feels lighter and simpler now. Just need to keep on truckin'!

xxx

Barbteeth
Barbteeth
in reply to LouisaMay

I’m not on Ibrance any more but Afinitor which is similar

Have stopped for a week as having my gall bladder removed tomorrow...I’ve noticed the difference for the better

Makes you wonder if it’s worth suffering the side effects for not much longer progression free survival

Barb xx

LouisaMay
LouisaMay
in reply to Barbteeth

Well at least we're keeping the pharma industry in pocket! Ha ha xxx

LynnFish
LynnFish
in reply to Barbteeth

Barbteeth! Good luck with the surgery tomorrow! My gosh...!

Barbteeth
Barbteeth
in reply to LynnFish

Thanks Lynn

I’m so glad to be going tomorrow as been in pain all week (worse than childbirth!!)... my husband put butter in mashed potatoes on Monday...men are useless..I wouldn’t have touched it if I’d known...grrrr

Barb xx

Hope all goes well tomorrow and you soon see the difference ! Much love x

Red71
Red71
in reply to Barbteeth

Good luck tomorrow with your surgery! I hope your recovery is easy. Elaine

Hope all goes well for you tomorrow💕

girlsptz
girlsptz
in reply to Barbteeth

Good luck tomorrow Barb. I'm sure once that nuisance gallbladder is gone and you have recovered you will start to feel better and more spunky again. I always appreciated your posts and many made me laugh and boy when you are living with this disease anything that makes me laugh is a big win. Take care.

Sandra

Barbteeth
Barbteeth
in reply to girlsptz

Oh thanks Sandra...good riddance...how can a little organ cause so much pain??

Barb xx

Sarcie
Sarcie
in reply to Barbteeth

Good luck with your surgery Barb.

Red1246
Red1246
in reply to Barbteeth

Hope all goes well with the gb procedure tomorrow.

Just wanted to mention I've been doing a lot of reading on Ibrance (as I'm on 100 mg with Letrozole) and the other drugs in the same class. Yes, it's true that many (including myself) have problems with low wbc's but not so low at the moment that I'd consider stopping Ibrance. There are many who have done very well with this (in combination with Letrozole or another AI) and living way beyond the quoted statistics. We all have very different metabolisms etc. and react differently.

Here's hoping we all do well irrespective of what our treatment involves.

Please let us know how it goes tomorrow.

All best,

Kathleen

Arisgram
Arisgram
in reply to Barbteeth

Good grief! You are one tough cookie. All the best with the surgery, and here is to a quick recovery!

Andi

Hidden
Hidden
in reply to Barbteeth

Sorry to hear you are having your gallbladder removed tomorrow. I hope goes well. Is it being removed bc of the cancer or a different reason altogether?

May I ask why they took your off Ibrance. I realize that having surgery would require them to take you off it so that you can heal properly from the surgery or did they take you off permanently? I am always tempted to ask my onco how many of her patients lived past five years with stage iv, but I have a feeling she would not give me an answer or even an estimate so I don't bother.

I read a story the other day about a man (I believe his name was William Holden) in US that passed away last week, but he had lived with MBC for over 13 years so that was even before these drugs were available. Who knows?

Well I hope your procedure goes well and that you do not feel too much discomfort during your recovery period.

hdhonda
hdhonda
in reply to Barbteeth

Good luck with your surgery. It was an easy surgery for me but that was well before MBC. Blessings Hannah

Hi Barb: Praying all goes well with your gall bladder surgery tomorrow & you’re back in the saddle (literally) soon! ❤️🙏❤️

Rotagirl
Rotagirl
in reply to Barbteeth

Hope all goes well tomorrow Barb, Fayx

mariootsi
mariootsi
in reply to Barbteeth

Thinking of you! Hope your surgery went well!

SophSP
SophSP
in reply to LouisaMay

Hi Angela,

Yes, I have felt a sense of grievance, but I am glad that the treatment I am on has been working well for so long. I am hopeful that I can remain on my first line of treatment for many more years to come, or until there is a cure.

I'm glad you are feeling so positive about things now. Keep up the good work!

Sophie

Barbteeth
Barbteeth
in reply to SophSP

Sophie as far as I’m aware Ibrance is for postmenopausal women but I guess you’re in menopause if you’re having Zoladex injections....maybe because it’s a ‘fake’ menopause?

Barb xx

SophSP
SophSP
in reply to Barbteeth

Hi Barb,

I started my zoladex injections on 16th May 2018 and my last period started 9 days later. I returned to see my oncologist a fortnight after starting my zoladex injections. She then put me on letrozole at the end of my last period, as my oestradiol levels had dropped enough and I was considered to be in chemical menopause by then.

The reason I wasn't offered ibrance was all down to cost. It took a while but I finally got the real reason out of her. That's why I was so upset for a while, because it was all down to money and how much she thought my life was really worth. So each time I have a good CT scan result I feel that I am doing the best I can to thrive despite my oncologist's decision to deny me a drug that may have helped me. That's why I am so doggedly determined to prove her wrong and to fight for my rights for the best possible treatment.

Sophie x

LouisaMay
LouisaMay
in reply to SophSP

Good for you, turning a negative into determination to do as well as possible. xxx

SophSP
SophSP
in reply to LouisaMay

Thank you!

Barbteeth
Barbteeth
in reply to SophSP

Sophie...Ibrance was approved by the NHS about 2.5 years ago so maybe your GP would prescribe it for you

My GP prescribes some of my drugs...you’re entitled to it....however you’re doing so well why worry and why have the side effects if you don’t need to?

Maybe it could be considered as a future treatment

Barb xx

LouisaMay
LouisaMay
in reply to Barbteeth

I think Barb is right. Never having been on it means that you may be able to have it further down the line. xxx

SophSP
SophSP
in reply to LouisaMay

My oncologist never mentioned that ibrance would ever be an option for me, so I don't think it's going to be offered.

SophSP
SophSP
in reply to Barbteeth

Hi Barb,

My GP won't prescribe anything cancer-related without my oncologist's say so. I have tried! I even tried to get some off-label drugs from my GP when my oncologist said no, but that was another no! I have got them now from elsewhere, and some are for free.

When I asked about the second line of treatment I was told it would be faslodex. As I tested positive for the PIK3CA mutation, I am also a candidate for alpelisib. So the two would be taken together. But my oncologist was quick to add that I won't need to change treatment for a long time. So in some ways she is really positive and upbeat, but in others I have felt like she has held me back.

As you say I am doing well without having to put up with the side effects from ibrance, so I just have to try and be content with my current treatment. I am also tolerating the off-label drugs and supplements and feel that they have helped improve my health.

Sophie x

BellaE
BellaE
in reply to SophSP

Sophie it sounds like you are doing so well for your cancer and your body. Keep going as you are, it is working.

You can appeal on the nhs about not receiving a drug.

It goes through a panel. That is how many people here in Wales get meds that are offered in England and not in Wales. However, in your case it might not be accepted because you are doing so well on the other meds alone. For an individual your Doctor has to put in the request for ‘exceptional circumstances’. The other way is to find out if the other hospitals closest to you offer Ibrance. Then it is a matter of equality.

Clare xx

SophSP
SophSP
in reply to BellaE

Hi Clare,

Thanks for the advice. I don't plan on appealing my oncologist's decision though. I have thought about it and as I am doing so well on my first line of treatment (along with everything else I am doing) I will stick with that.

I'm waiting to hear back from the oncology nurses about whether I can have stereotactic radiotherapy. My oncologist said no last week, so I called the nurses last Friday to see if my oncologist will change her mind. I doubt it, but I have to try.

Sophie 🌷

Arisgram
Arisgram
in reply to SophSP

Hey Sophie, Why were you denied? I know nothing about your health system, but my insurance company as well as another member's on this board initially denied our treatment. We were eventually able to push them through.

I haven't had a scan yet, so I don't know if the treatment was successful. I'm almost certain the other woman had positive results.

Best of luck, Andi

SophSP
SophSP
in reply to Arisgram

Hi Andi,

I was denied due to the cost to the NHS (National Health Service). I didn't even know that ibrance was an option until I read about women on here who were put straight on ibrance. That was a long time after I started treatment. I'm doing well on my current treatment and off-label drugs, so will carry on with what I am doing.

Sophie

mariootsi
mariootsi
in reply to SophSP

Carry on, Sophie! You are doing well without Ibrance.

SophSP
SophSP
in reply to mariootsi

Thank you, Marianne! I appreciate the words of encouragement. I have been stable ever since I started treatment, so letrozole and zoladex have been beneficial, along with zometa. I saw my hygienist today and she said my teeth are in excellent health and that at this rate I will do her out of a job! I had mentioned the risk of osteonecrosis, as my oncologist asked me how my teeth are when I saw her last Monday. But she said that my teeth are not showing any signs of damage, and to return in 12 months. I actually felt a bit nervous about pre-booking and paying a deposit so far in advance, but that's the new policy at my dental practice. Well, I suppose that's even more reason to stick around for a long time! I wouldn't want to lost my deposit!!!

Sophie

mariootsi
mariootsi
in reply to SophSP

No, you wouldn't want to do that.

BellaE
BellaE
in reply to SophSP

Wise decision Sophie.

Good luck, I hope they accept. Dig your heels in if they don’t.

Xx

SophSP
SophSP
in reply to BellaE

Thanks, Clare. I haven't heard back from the oncology nurse. She may not have had a chance to speak to my oncologist yet. If she says no I will try some other options. They probably see me as a problem patient, as I have never been one to just meekly accept the status quo. I respect my oncologist and have (mostly) taken her advice. Some things just didn't make sense to me, so I didn't take her advice on board. I refuse to just go home and wait to die.

Sophie x

Hidden
Hidden
in reply to SophSP

I always wonder if they make a reference in their medical notes as to "problem patients" which I think I may be because when I am fed up, I tend to get loud and anxious. It reminds me of the Seinfeld episode where Elaine had a problem with a doctor. He apparently made a note about her being a problem patient and then whenever she tried to go to different doctors, they would all look at her records and make a face and she realized she was labeled a "problem patient" and was trying to get it erased.

My center has a patient portal but they hardly put anything in their which annoys me. I said something to my oncologist like what is the point of having a patient portal if you never put anything in there. She said oh that is just a waste of time. You can ask me if you wish. No, I would rather it be on the patient portal.

But when I had to have that invasive surgery by that plastic surgeon who knows he did not do a good job (find out after it was his first time doing in groin area), my onco recommended him.

I had a big argument with him in his office. I was in so much pain and I was so angry at him that when he started to talk I put my hand up and said I really do not want to listen to anything you have to say right now bc I am in so much pain. He said well I told you would be in excruciating pain. I said yes, but I assumed you would give me more for the pain then Tylenol. Twice I wound up going to ER because of the bleeding. After that he then refused to see me because another cyst was forming and that was the whole point of my having the invasive operation to begin with. His PA said he cannot see you anymore. I even told my onco and she looked at my leg and was surprised there was still a large gaping hole there and she took a photo and was going to send to him but nothing ever came out that.

While perusing the patient portal, I accidentally came across a report that doctor did. I wanted to scream. He wrote at the end: Patient was very appreciative of my efforts and thank me for my work (NEVER HAPPENED). He said I told patient I was grateful that she chose me to do this surgery. (NEVER HAPPENED). I could not delete it (which I get) but I was not even allowed to write my own comments.

He made it seem like there were no issues and how pleased I was. How he is allowed to write something so completely false and just an outright lie and it's accepted as fact and put in my patient portal.

Doctors do not like when patients question them. I wonder what they write me about in their "secret notes" which are NOT put on the patient portal.

SophSP
SophSP
in reply to Hidden

That doctor needs to be struck off! He let you suffer needlessly when he could have written you a prescription for strong painkillers. How do doctors expect us to heal when we are in pain? He also lied, which is completely unacceptable. I think you are right and that they do put personal things in our notes about how we act and the questions we bring up. My GP doesn't mind if I bring up questions, but when I disagree with my oncologist I sometimes feel like I have struck a brick wall. I know she has the clinical expertise, but I want her to try her best to help me manage this disease.

Sophie

BellaE
BellaE
in reply to SophSP

Good for you. You carry on fighting for yourself.

It does work to question things sometimes.

There are always other members of staff that will entertain your argument. There should be more than one Oncologist as well. We have an Oncologist in Radiotherapy as well. Might be worth finding out about that.

Clare xx

SophSP
SophSP
in reply to BellaE

Thank you, Clare. I wish I didn't have to keep fighting, but I feel I need to. I did the same thing when I had the shingles vaccine. It took months of back and forth fighting before I was finally allowed to have it. My mum developed shingles and pneumonia while she was neutropenic following her cancer treatment and she ended up dying because her immune system couldn't take any more. I don't want the same thing to happen to me (although I haven't had chemotherapy and my neutrophils are within the normal range).

Sophie

BellaE
BellaE
in reply to SophSP

That must be a worry for you, after seeing your Mum have to fight needless illnesses.

You can get a pneumonia jab as well!

Xx

SophSP
SophSP
in reply to BellaE

Hi Clare,

My oncologist made sure I got the pneumonia jab over a year ago. I didn't even have to ask for it. The nurse practitioner who saw me questioned why I was getting the pneumonia jab (she thought there was some mistake) but as soon as she saw the letter from my oncologist she let me have it. It took months to get the shingles vaccine, as I'm not in my 70s.

Sophie ❤

BellaE
BellaE
in reply to SophSP

I wonder why they were so tight with the Shingles vaccine. I see shingles a lot in colleagues and patients - it is nasty and very painful. Maybe they think we can easily cope with a dose of it!!

We should be offered all prophylactic injections as a given.

I feel for you having to fight all the time - but I think it makes you stronger Sophie.

Xx

SophSP
SophSP
in reply to BellaE

They said it was down to funding. It was only being offered to the elderly and even having cancer didn't qualify me for it. But my GP was supportive and so was my oncologist, so after a second more strongly worded letter from my oncologist I was allowed to have the shingles vaccine.

Sophie

Hidden
Hidden
in reply to SophSP

Well look on the bright side. Whatever treatment she has offered you is working and that is what it's all about in the end, getting good scan results. When, and if that time comes, then you can broach it.

Odd, you said that she told you that falsodex would be your second line of treatment. I get falsodex injections, along with at first the Ibrance and still get the falsodex now that I am on Verzenio. Two types of different medications. I believe the falsodex is supposed to stop my body from producing estrogen (which feeds my cancer) and that the Ibrance/Verzenio med is used to stop the cancer cells from splitting and dividing into new cancer cells.

In US, no GP I know would ever write cancer medications and not even legally sure they would be allowed to. They also stopped writing opiate pain medication at all bc of the strict laws that are being put in place and constantly revised to make it so that it is more of pain for doctors to know that they are being tracked and how many pain meds they write and none of them wish to bother so now it is only a specialist that can write them. Even dentists, who used to write them, if you had a root canal or wisdom teeth removed have stopped rxing opiate pain med, even for a few days worth during recovery. Now everything is ibuprofen should be enough even if they realize it is not.

I hope your current treatment works for a long time. It sounds like your onco knows what she is doing. I don't see how she is holding you back if you are doing well on it. So for now, enjoy the continued good scans and I hope you have a long run with this.

SophSP
SophSP
in reply to Hidden

Thank you! I am grateful to her for helping me and for the fact I have remained stable since I started treatment. I just felt resentful when I found out that she didn't offer me ibrance because of the cost. It made me feel like my life didn't matter. But I can see that what she chose has worked.

Thanks again,

Sophie

hdhonda
hdhonda
in reply to SophSP

Oh Sophie, I am so sorry your oncologist did that. I thought she was just saving it for later since you are doing so well without it. I would resent her too. Hugs to you. Blessings Hannah

SophSP
SophSP
in reply to hdhonda

Thank you, Hannah. No, ibrance is not being saved for use later on. I've been told that the second line of treatment will be faslodex and alpelisib. But I'm hoping that I won't need that for a very long time.

Sophie

hdhonda
hdhonda
in reply to SophSP

Sophie, I am hoping you won't need it for a long time too.🤞🤞🤞

Blessings Hannah

SophSP
SophSP
in reply to hdhonda

Thank you, Hannah! That's my hope too.

Sophie

I had the gut reaction to it as well, and I started at 100 mg. and did 5 days on 2 days off ANC stayed good but after 4 mos. it started giving me chest pains. I'm just taking letrozole now and so far stable disease. God bless you and heal you from the top of your head to the soles of your feet, in Jesus name, amen!

Hidden
Hidden

My first line of treatment was 125 mgs. of Ibrance. My week off I felt like I was going to die I was so sick. I only lasted three months. I did not even know at the time (the beginning of my journey) that there were lesser dosages. My onco took me off and put me on Verzenio. I could not handle at 150 mgs. (twice per day with no breaks at all), could not handle the 100 mgs. Finally, the 50 mgs. was the trick.

I was so so glad to get off the Ibrance but who knows if she had lowered the dosage, maybe it would have made a difference.

LouisaMay
LouisaMay
in reply to Hidden

Who knows, but in my case it made no difference lowering the dose. xxx

Hidden
Hidden
in reply to LouisaMay

I guess for some it works well and for others it does not. It is like a crap shoot. I am assuming that the onco makes a decision on what types of drug to prescribe depending on age, what type of cancer, how advanced one is already is, and other things we may not be aware of.

Although I feel like my onco goes exactly by the text book and never thinks outside the box. I just found the last visit odd, heard her being reprimanded and I had been waiting to see her in the office for over an hour which never happened before.

She seemed kind of stressed and upset and just quickly ushered me over to get my injections so I never actually had a visit with her. I think she was too upset and not composed enough to speak with me. I actually felt bad for her but it this head honcho needed to reprimand her, he should not have done it in a hallway where I would be unable to hear it. It should have been done behind closed doors. I am 99% sure if it bc she referred me to palliative care where the pain specialist wrote me opiates. She did not write them and it was me who was so upset at my last visit bc I was complaining that my pain was getting worse and I felt like I was being left to try and manage on my own that she referred me to the palliative care. I will know for sure on Wed. when I go back to meet with the pain specialist and see if she tells me she can no longer write me an rx and that my onco will explain to me. Everything is told to the onco who does the explaining to the patient, not the other specialists such as the pain specialist or even the radiologist doctor who once told me she saw a new cancer tumor. I was told she got reprimanded for telling me in person when she was supposed to pass that info to the onco only and she was supposed to tell me the results.

LouisaMay -

I'm glad that you're feeling better! If your gut was telling you "no" to the Ibrance, I'm sure she was right! Best wishes!

LouisaMay
LouisaMay
in reply to LynnFish

Thank you Lynn, and right back at ya! xxx

Angela I know this decision didn't come lightly and you did it in consultation with your oncologist and it was based on sound decision troubleshooting so I'm sure it is a big relief for you. Embrace it and enjoy the freedom of hopefully much less fatigue. Quality of life is the most important part of living with this disease....without it really what's the point. Thanks so much for sharing and I wish you nothing but the best. Let's hope your success continues for a very long time. Take care.

Sandra

LouisaMay
LouisaMay
in reply to girlsptz

Thank you so much Sandra, your message is very much appreciated.xxx

Hoping your session with your onc goes well tomorrow . Will be thinking of you ...as you always think of everybody else on here ... so sending all our love your way x

You are so kind...thank you.

Sandra

hdhonda
hdhonda
in reply to girlsptz

Sandra, I too hope your appointment goes well. Blessings Hannah

I did not tolerate Ibrance well at all. I gained 20 lbs and was tired/lethargic most days. Low neutrophils. Lymph nodes were also continuing to grow with more “uptake”. I’m doing much better with Afinitor- also called the anorexia med - and I’ve lost almost 40 lbs. (and I needed to!) No increase in cancer cell uptake in lymph nodes - so I’m overall a fan, even with the side effects. Will say a prayer for success with your new regimen!

LouisaMay
LouisaMay
in reply to Lolli2020

Thank you, and here's hoping you continue to do well on Afinitor xxx

Barbteeth
Barbteeth
in reply to Lolli2020

I e been on Afinitor now for two months...starting 7.5 dose as I felt weak...my markers have dropped a bit so that’s reassuring

Hope I don’t lose any more weight or I’ll be a skinny Minnie!

Glad you’re doing well

Barb xx

LouisaMay
LouisaMay
in reply to Barbteeth

Yes, we ladies of a certain age need to hold on to a certain amount of curves - skinny is not a good look! xxx

Lolli2020
Lolli2020
in reply to LouisaMay

For sure. I’ve lost the curves that help my pants stay up without a belt. I’m always tugging at them!

Hidden
Hidden
in reply to Barbteeth

Geez, it seems like everybody else is losing weight when I am gaining. Skinny is a word not used for me even before Cancer, but now it is out of control.

Today my physical therapy evaluation. I am hoping they can help me with my back pain. At this point, if they cut off the pain meds (which I expect) then I will need to get some kind of back brace bc I do not want to go back to the same place I was in, with the back pain being so bad that it hurt to walk even 1.2 of a block. It was affecting my life. I had no quality of life being locked up in a small Brooklyn apt. because it was too painful for me to even try and walk that far.

I am go a cancer nutritionist, my first visit, on Wednesday. I know I have horrible eating habits primarily bc I live alone and I hate cooking anyway. I am hoping she can give me some suggestions so that I can even lose some weight although bc of the meds I am on, I do expect to be able to lose much. I would be happy even with a small weight loss.

If the pain meds are stopped and I doubt pt is going to work in a short time, I am looking online into back braces but them seem so big and bulky.

SophSP
SophSP
in reply to Hidden

I wish you well with your appointment today and on Wednesday. I was told that I would gain weight once I started treatment. Like you, I didn't like the idea of putting on weight. So I decided to increase my exercise and eat more healthily to help keep any extra weight that thought of coming anywhere near me off! I have lost some weight and have been able to feel the benefits. I didn't want to put extra strain on my joints and make it harder to deal with this disease. My oncologist once commented on my weight loss and said "Is it deliberate?" Hopefully the nutritionist can give you some good tips that are not too difficult to implement.

Hidden
Hidden
in reply to SophSP

I am hoping for it. I am home all day alone and I dont drive but lately the weather has been nice and I would like to go out and walk for a while bc I do no physical activity at all. But the problem is my lower and mid back. I start walking even 1/2 block and my back starts really hurting to the point my eyes tear up and then I have to find something to lean on like a wall, or a fire hydrant or a light post to try and lean my back against it (forgot about leaning a car, they will kill you here in Brooklyn for that:).

I told my onco I lost it when I tried to walk to the library a few weeks ago (the pain started out dull and in the past few weeks has increased to pretty intense) and I had to stop so much and then wait five minutes, then walk and stop again. I tried but I cannot just "walk through the pain." So a walk that should have taken me 15 minutes took me almost 40 minutes to walk and by the time I got to the library I was exhausted, in pain and in tears.

I wound up calling car service to take me home which is crazy. So I am doing no physical activity at all to the point I was not leaving my house until it was for a cancer appt. And then the depression becomes because I don't drive, and I am home alone all day and you look at the clock and it feels like the day is never going to end.

So the onco said she does not think my back pain is from the cancer even though it made two small holes and she said that I have disc degeneration(?) in one back disc.

I was seriously going crazy bc I do not drive and I want to/need to be able to walk. I am having my first physical therapy evaluation today. At this point, I will even wear a back brace. It is depressing to be in the apt. all day and I am sure I will lose some weight if I can start walking and that will increase my mood also.

I dont think they really understand how painful it is bc they see no reason why I am having such back pain. I looked on amazon.com but those back braces were so huge and had to be worn outside your clothing and I don't feel like walking around with that now that Spring will be here soon enough.

I just want to be able to walk without pain and not think about every step I take.

I know if I could walk, I would be out there with my iPod (yes I still use one of those, as I don't have a cell phone nor know how to use one LOL...TRUE). I still have a landline.

It got to the point that I became scared of leaving the apartment. Last week I tried walking to the pharmacy because I thought mind over matter but it didn't work and it was raining and I did not have an umbrella and I found a bench on the way home and sat there for 20 minutes in the rain until the pain went away.

Now, I say, I promise Lord, I will not complain about anything else if you can just take this pain away from my back. (But the Lord knows I have said that before and then complain anyway LOL).

SophSP
SophSP
in reply to Hidden

You definitely need to see some change, as your life has been severely impacted by the back pain and inability to walk far. Whether the pain is associated with the cancer or not, your doctors should do something to address your concerns. Is surgery an option to repair the damage? It sounds really serious, so I hope something can be done to ease the pain. Staying cooped up indoors can't be helping you either. Do you have a number to call your oncologist or oncology nurses directly? If so, I would get right on the phone to them and let them know exactly what you need. You can't carry on suffering like this.

Hidden
Hidden
in reply to SophSP

My onco sent me to palliative care bc I said I was walking a fine line between losing my sanity. I said I cannot manage this anymore. The pain specialist gave me 90 10 mg. percocets and gabapentin and a referral for physical therapy. Today was my first evaluation and he had me some so exercises for my back and I am so so out of shape and my body and muscles are so underused that I feel so stuff. So he gave me a copy of some exercises to do every day and next week I have two apps. for physical therapy with him. I can't be on percocets all the time. And once they wear off, the pain is back.

Made me arch my back and lean on my back and hold it until 10. A few more and then he was like you want to ride the bike for five minutes. I'm like are you kidding. You want a dead 60 year old woman in your physical therapy center. I said five minutes to me is like an hour.

It may just be wishful thinking but I feel with the little exercises I did today, when I left to cross the street I thought I felt a little less pain. So I need to do my part and going forward, I am going to have two sessions a week. Spring is coming and I want to get out of this apt.

LouisaMay
LouisaMay
in reply to Hidden

Well done you, keep those small increments going. xxx

SophSP
SophSP
in reply to Hidden

I'm sure it's not just wishful thinking! I hope that you really did feel the benefit of your first physiotherapy session.

Red1246
Red1246
in reply to Lolli2020

Wow that’s great! What other side effects do you experience?

All best!

Kathleen

Lolli2020
Lolli2020
in reply to Red1246

Hi Kathleen. My side effects are mostly loss of appetite, neuropathy, occasional nausea, fighting mouth sores, dry mouth, thinning hair and nails (progressively losing nails), fatigue, anxiety bouts out of nowhere, stomach issues back and forth, aches and pains (worsened arthritis) from exemestane, nose bleeds, acid reflux. As I type all that I realize why I feel stressed - ha! The addition of the med to bring my blood sugar down seems to be adding to symptoms. And since that medication tends to cause weight loss (which is usually desirable for people with high blood sugar and overweight) I have the stress of trying to get more good calories consumed. What a balancing act this is!

Hidden
Hidden
in reply to Lolli2020

I have severe dry mouth also from all the meds. I told the pain specialist I get agitated if I do not have gum on me or even in my apt. My mouth gets so dry that my tongue sticks to the roof and if I try to talk, I feel like I sound like I am high or drunk on something. So I always carry gum and chew it and it keeps my mouth moisturized but you should see me if I am outside and realize I have no gum. I get myself all agitated.

Sorry you have so many other symptoms. I never got mouth sores (even when on the Ibrance). I dont have issues with acid reflux. I do sometimes suffer with being constipated to the other extreme. I am trying to get a handle on that.

Perfect way to describe it as a "balancing act." Thank you. I hope she can offer me suggestions. I live alone and just cook for myself and so I have never been a healthy eater and I do not like cooking at all. So I usually buy prepared foods that I can just put in oven. Today it is beautiful out and for the next few days it is supposed to be nice. I am hoping this place can give me some ideas or suggest a type of brace I can wear.

Lolli2020
Lolli2020
in reply to Hidden

I know what you mean about often not being able to talk normally. Can be embarrassing and quite frustrating. I do have the Biotene spray that I used a lot at first and should probably start back on that. The dryness went away for awhile but I think it's the Farxega for high blood sugar that's started it up again. Good idea to keep gum on hand. It was contributing to TMJ quite some time ago so I stopped chewing.

I do hope you get some good suggestions for healthier eating. I know how to do it, but making myself eat things because they're good for me over those that taste good ... well, I'm working on that one, haha! I do have my husband and 22 year old son at home, and they do most of the cooking. I want them to eat what they enjoy - and that usually doesn't match what I enjoy. Bless their hearts, they try so hard to help me figure the food thing out. I'll look forward to hearing what good tips you get! And best of luck for getting the right type of brace. I have one for my back (that's a whole other issue ;) and it really is helpful.

It's overcast here but comfortable outside. I am blessed with a beautiful deck and garden to sit out and enjoy. Much healing comes from such a peaceful place. We are leasing and I don't know how long we'll be here - so I'm enjoying it while I can!

I go through the same thing. I was quickly lowered to 75 mg and my neutrophils would drop to 0.3. I would be off three weeks to get them back up. I’m now taking Ibrance one week on and one week off. That has kept things at a decent level (only once did I have to wait two weeks). I feel better and I know that every other week I won’t be fatigued and sleeping all the time.

Red1246
Red1246
in reply to Sarcie

Hi!

Have you had scans while on this cycle of pill taking? I too have low neutrophils and mentioned your cycle to my onco nurse. They’ve never changed the dosage before and are reluctant to do so without proof it’s still effective VS the 21 days on/ 1-2 weeks off.

Thanks and all best,

Kathleen

Sarcie
Sarcie
in reply to Red1246

I had one scan that was done with half on this method and I’m having another one in a couple of weeks which will be completely on this method. This is not a method that the drug company approves but there are many women that have taken it 5 days on 2 days off, week on week off, and other ways. My oncologist does not want to stop the Ibrance as long as it is preventing progression as we cannot go back to it. He believes this is a long battle with a limited list of treatments so he wants to get the most of any treatment that works. I will let you know how the scan turns out

Hidden
Hidden
in reply to Sarcie

You are lucky. I have read of other women taking it the same way. My onco is strictly by the text book. I want to ask her (but would feel funny) how many stage iv patients she has actually had. I had a former childhood friend who was stage ii and after her chemo, radiation, mastectomy was sent to my onco I guess to check on her after all this. (My friend is now on some sort of drug for 10 years. It used to be five years but now they are recommending for 10 years to avoid reoccurrence).

I have learned more from this board than anything. Once I got so frustrated with my onco, I said I have no real idea how I am doing, I feel like you never really give me information and I walk out of your office not really sure of anything. She apologized and told me she would try to discuss more in detail.

At least your onco is willing to step outside the box and try various ways of using the Ibrance that works best for you, but I also understand, which must be frustrating that if you choose to go on another med, you can never go back on the Ibrance. But who knows anymore with my cancer center, I think they have rules and protocols that she may be expected to follow.

I'm not really sure why I have to continue to have an appt. with her (same day I do my blood work and get my shots) bc nothing is happening until my next CT scan.

Sarcie
Sarcie
in reply to Hidden

I am always ask my oncologist questions from what I read here. He is good and answers them all and doesn’t tell keto not believe everything I read lol. He doesn’t write my prescription as 1 week 1 week off, he writes it as normal so there aren’t any conflicts. He said drug companies don’t want to hear their product can’t be used due to side effects as it “skews” their numbers. He is busy and overworked but overall he is good and I’m comfortable with him.

I see my doc once a month as he likes to check I’m not having issues. I think most patients would suffer with some things that could be helped or have issues they don’t realize are bad.

Hidden
Hidden
in reply to Sarcie

I go once a month to see my onco. I get my blood work done, then see my onco (by the time they do my blood and then I go to another waiting area to get called (and others are there also) to see their doctor, she already has the blood work results from earlier and then my final thing is my falsodex and xgeva injections and then I set up appt. for next month. So I get three things done all in the same day. I still can CT scans every three months.

Red1246
Red1246
in reply to Sarcie

Thanks so much! I hope your scans will show no profession, stable etc. I applaud your doctor for trying to give you a good quality of life while keeping you on ibrance. Mine is head of oncology and research-based and very academic. Sort of a “show me the numbers” type.

Look forests to hearing your results!

All best,

Kathleen

Hope you are soon doing better on the changed meds .Wishing you well! x

My neutrophils have been as low as .6 and typically were .8 over three and a half years on 100 mg of Ibrance. It didn’t cause me any problems (even travelled to India, Europe And Brazil). and my doctor was unconcerned. Interesting how different we and our doctors are!

Good luck with the new mix!

Red1246
Red1246
in reply to Buffwright

Interesting indeed! I applaud you for going to India while taking ibrance. My oncologist told me I could go to Europe but not, for example, India or Africa.

Hope the coronavirus isn’t going to inhibit your travels too much.

Best regards,

Kathleen

Pbsoup
Pbsoup
in reply to Red1246

I also travelled to India and am going again in April. My doctors were totally fine with it. A friend who is an infectious disease doctor said the main thing is to wash hands and avoid overcrowded places.

Hidden
Hidden
in reply to Pbsoup

That is kind of funny. I have never been to India but I read and heard it is one of the most populated areas in the world. My friend went a few years back and she said it was so crowded and had all these different smells. So I hope you know an area in India that is not crowded.

Enjoy your trip. At least you are living the best life you can while dealing with this. Would love to see some photos upon your return.

Pbsoup
Pbsoup
in reply to Hidden

I am going for work. Yes there are crowded areas, and I will be in Mumbai. But my point is it is important not to overreact. (Or under react as many of us are immune compromised)

I also realize that as of today I am doing well. That could change tomorrow. So it’s a day by day decision making process.

Hidden
Hidden
in reply to Pbsoup

Do you work for a non-profit charitable organization? My favorite place was Africa. If I could afford it, I would jump at the chance to go back taking any risks. But I can't afford it. I am trying desperately to get on The Ellen DeGeneres show bc she hands out $20,000 shutterfly checks like they are tissues. I said to my friends you have to find a way to get me on that show (no viral videos, alas) bc I just know she would hand me one of those big cardboard checks for $20,000 from Shutter-fly and I would book my trip right away.

Red1246
Red1246
in reply to Pbsoup

Great - enjoy your trip! I was simply commenting on your remark that it’s interesting our doctors have such differing views.

I’ve also been to India 3 times and enjoyed it immensely. If I remember correctly, you go for work. Yes?

All best,

Kathleen

Buffwright
Buffwright
in reply to Red1246

My blood counts were all higher when I got back!

Looks like the corona virus will stop my travels for a while....,

I have gone for work and for Rotary and to see friends. India is crowded, but there are lots of very peaceful places as well...parks, gardens, beaches, mountains.....

Red1246
Red1246
in reply to Buffwright

How fortunate to have to go for work and Rotary.

Agree re beautiful places to visit in India. Fortunately not all are like Delhi and Mumbai. They’re very interesting cities for sure but the sea of humanity and all other can be overwhelming and put one in sensory overload. We enjoyed Kerala as it was much less crowded and very few horns honking. 😊

All best,

Kathleen

Wow - I'm surprised they didn't lower you after the first few cycles. I went down to 100mg in cycle 2 and have done fairly well though still have low wbcs. Apparently not low enough to go to 75mg yet. Been taking it since September '19. I've heard all 3 doses are equally successful though I wonder how that's possible.

Glad you feel such relief - we need to keep positive and that's hard when having problems with the meds. How lucky to have 3 monthly visits. I see my onco on that schedule as well but speak with her nurse navigator (who is fortunately a mine of info and lovely!), weekly. Plus have blood tests fairly often to check wbc count in week off Ibrance and the week thereafter to see if there's improvement before I begin next pill cycle. As you say "different strokes for different folks". Have a great week!

Wishing you all the best!

Kathleen

Buffwright
Buffwright
in reply to Red1246

I went to 100 after 125 for three months made me dizzy. Have been on 100 for 3.5 years. I may be coming up on a change, as, ironically, my neutrophils have gone above 1.

Red1246
Red1246
in reply to Buffwright

Wow! Glad to hear you’ve been on 109mg for so long. I thought neutrophils had to be above 1 so this would be a good thing...?

All best,

Kathleen

Buffwright
Buffwright
in reply to Red1246

I didn’t have overwhelming side effects (just a bit tired and rising hairline and other indignities of aging - I’m 65), and other than a couple of UTIs, I never even got a cold worth mentioning.

Red1246
Red1246
in reply to Buffwright

A mere babe! I’m 73 and have every intention of celebrating my 80th!

Glad you too have had no terrible side effects. We’re very fortunate in that respect.

All the best!

K

I am on just Letrozole doing fine

Glad you are doing good now. Blessings Hannah

Hi LouisaMay! My Dr. started me on Ibrance and Letrozole last year @ 125 mg on the Ibrance. It was obvious the 1st month due to many side effects, but Especially the Neutrophils that dose was too high for my body. They called me as soon as they had the 1st labs back and said to STOP them immediately. We switched to the 100 mg for the next month, and the #'s were still too "off". Next month we dropped to 75 mg., which is where I've been for an additional 5 months. My #'s are still off, but at what the Onc considers an acceptable level. Still lots of other side effects, but never all at the same time, and none are too severe to be able to stand them. Esp since I'm having Amazing results w/the meds. Worth the trade-off. So glad you found a regime that works for you - we're all different! All the best to you on your journey! Hugs!

Hi LouisaMay, I take Ibrance and Letrozole and seem to be tolerating them quite well. My tumors are shrinking. I have been on them for nine months and they monitor me every month and every three months I have a CAT scan and a bone scan. I also have osteoporosis so they are watching my bones as well as monitoring my tumors which are also in my bones. I wish I could get off the drugs but if they are helping me I will stick with them. I meditate and eat mostly vegan food - although I cheat a wee bit. I also take some bone broth because of my osteoporosis. I wish you the best with your new medications. You will get well if you believe in your own power. That is what I think. I believe I will get well. Hugs to you and good luck. Stay happy.

Red1246
Red1246
in reply to viennagirl

That’s terrific your tumors are shrinking!

I too have bone metastasis and osteopenia so also have Zometa infusions once a month to strengthen the bones. I’m tolerating all fairly well except for the low wbc’s.

I believe in the mind/body connection. Currently I’m reading a book called “Radical Remission”, which includes stories of patients with advanced stage cancer who made life style changes ultimately putting them in remission. Fascinating.

I may not be one of them but I have nothing to lose in trying. I’m cutting out sugar and whey products and eating mostly a plant-based diet with cold water fish and chicken or turkey a few times a week. One can eat very well this way so while I still miss sweets, each week that goes by when I don’t purchase cookies to have with tea, I feel I’m giving myself a gift albeit another kind.

Meditation is great - that’s my next “project” and hope to learn how to quiet my mind soon.

So glad to hear you’re doing well. I read something yesterday I loved:

“You are the sky. The rest is just the weather.”

All best,

Kathleen

viennagirl
viennagirl
in reply to Red1246

Thank you Kathleen for your encouraging words.

You are doing so many good things and I believe it will make a big difference. I still cheat a little bit. Chocolate is my worst weakness. But I am still getting good results. Yes, you should try meditation. Start with just ten minutes. You will feel more peaceful and in control. Just make up your own mantra. Create a sound that is soothing and use it to relax.

Another thing I do is spend time on my Wave Mat. I bought it from a company in New York. It works electromagnetically using precious stones like jade, tourmaline crystals etc. It might be helping me. My daughter thinks it is working because my tumors shrank so quickly.

Our illness is considered incurable but I don't believe it is. I recently read something by Stephen Gould (On-Line) on the time frames which many doctors give patients. He was told he had - according to the statistics - 8 months. He had a very serious cancer which had spread. He has been living 20 years since his diagnosis. He said he made some life style changes and just believed he had a good chance to live a long time and his positive attitude obviously helped him stay well. His Essay is On-Line. He said to pay attention to your own feelings and stay in charge. I also read Radical Remission and it is very encouraging.

However, I turned down that treatment that you are taking for bones. My Oncologist wanted me to have an injection once a month but I listened to a video by Dr. Darren Schmidt on Osteoporosis and he said that those kind of drugs created denser bones but they do not protect from fractures. He said they actually made you more vulnerable because your bones become more brittle. You might want to look up Dr. Darren Schmidt on line. His video is very interesting - lots of details.

However, you need to listen to your own head and heart and do what you think is best. Dr. Darren Schmidt suggests the best way to heal bones is with bone broth. I recently purchased some bone broth at Costco and I will try to add it to my Vegan diet. It doesn't actually fit with a vegan plan but he said it is the only way to create new bone growth. So, what the heck, I am giving it a try. I just started so it won't be until my next bone scan in three months before I can see if it is working.

I tell myself every day that I am healing.

All the best for a complete recovery.

Hugs Marlene

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