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Scan

Hi ladies

Had scan results

Tumour markers up a bit again

No new lesions..no change in bone mets

Fluid in pleura disappeared

All in all could be worse

Barb xx

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Hi Barb. Congratulations on your positive scan results! Tumor markers can fluctuate at the start of treatments and sometimes are not reliable at all anyway. I've been told to not expect real changes in bone mets until many months after treatment starts. Enjoy your day and celebrate. Take care.

Sandra

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Thank you Sandra..I’m afraid I do obsess about the markers as they dropped dramatically at the start of treatment and now they’re fluctuating and not yet in the normal range..anyway I’ll be realistic and be pleased for stable bone mets

Barb xx

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Hi Barb,

It sounds like you are stable! That is really good news. I am so happy for you. I know how worried you were about receiving your results. I hope that you can now rest a bit and maybe even celebrate if you feel up to it!

Take care,

Sophie x

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Aww thanks Sophie..you are always a comfort

I’ve had a glass of red and been to see Bohemian Rhapsody (again!)

Barb xx

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You're welcome, Barb!

I'm glad you had a good time seeing Bohemian Rhapsody!

Sophie x

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Barb

Is that your understated way of saying good news? Ha. That’s great news, what we pray for. Now exhale!

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Oh thank you for that

I’m such a terrible pessimist..or is that a realist?!

I’m going to put on my positive hat on now and stop being a misery

Barb xx

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I think it’s both. I may sound upbeat, but I am no Pollyanna. Someone once told me you can fool yourself either way: being optimistic or pessimistic. I struggle with it big time, but it’s just not good for your mind or body. Anyway you enjoy your good news. It’s what we all want to hear.

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I’m really struggling mentally and my oncologist suggested I speak to someone or consider medication for my low mood

I refused..not going down that road

Barb xx

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Therapy and meds really help. I understand not wanting to do it. I struggled with it too but I'm glad I did both otherwise I couldn't function at all!

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Really helped you??

I just don’t want to ‘give in’ and not function normally

Silly I guess

Barb xx

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I take 1/2 a pill. I can function well. You just need a low dose. I'm not high or anything. I don't like that feeling at all! Think about it. It calms you and relieves that anxious panicky feeling. That's it.

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Dear Barb,

I am reading your reply to marriootsi. Are you functioning "normally" now? I am very stubborn. Decades ago I started getting panic attacks. I didn't know what they were, just that I felt like I was going to drop. Those were the days when you would be admitted to the hospital for every test under the sun. CT scans, X-rays, work up for hypoglycemia. 5 days of it. My doctor, who was resistant to psychotherapy also, said she had no medical answer for me and I might try a therapist. Me, "nuts?" I was very resistant, but had nothing else left to try. So I went. The rest is history. I went to therapy and was given a low does of librium to take if I felt the symptoms coming on. I used very little of it, but within 2 years had no more panic attacks. But started spilling my guts in therapy and wound up getting treated for depression. It's been on and off for a few decades. With MBC, it's on. I am on a very low dose of a very old antidepressant: elavil. It works for me. I feel no side effects. I still get low and cry, but I bounce back. I am no longer thinking of how to check out. I struggle to find meaning in all this and keep going, but I do keep going and keep looking for things that will light up my life. I am amazed that anyone can live with a disease like this and not be on psychotropics, but that's not my lot. I don't advocate needless meds. In fact, I think there is a trend to medicate problems that could be worked with and resolved without meds because it's easy and because there's big money behind it. For me, I was sick and tired of being sick AND depressed. If you could feel better, wouldn't you want to? It doesn't mean your problems go away. They become more manageable and you can put things in perspective more easily. I don't feel as stuck. Caveat, you may have to try several meds before finding "the one." I don't like SSRIs, and they are popular now. It took a few tries and a good psychiatrist who was willing to try elavil. Maybe SSRIs will work for you. You may also have to go thru a few therapists before you find one that you can work with. It's a bit of work, but when you get it together, you will start to feel better. If you could wake up, and feel much better about getting out of bed and living your life, is it worth a try? Do you want to go through life feeling low as a baseline? I think we have it tough enough, anyone would cave with what we are dealing with. Why settle for dragging your heels through the rest of you life, mbc or not?

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Thanks nstonerocks for your detailed reply

I actually do have amitriptyline..only 10 mg at night..originally prescribed about 5 years ago to help with my back pain..I suspect this pain was from mets but nobody bothered to check it out..I should have twigged but never thought it was mbc..always suffered with twinges due to my job and riding horses..expected pain now and again

Anyway going back to the elavil..what dose do you take just out of interest?.. I know mine wasn’t prescribed for anxiety so maybe my doc could advise a higher dose as I’m used to them now after taking the low dose for so long

I really think I’m clinically depressed as I hate waking up and remembering my predicament I.e mbc..I’m a different person now to the happy busy fun girl I was and I don’t like it one bit

Barb xx

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I understand, and I don’t mean to sound preachy. I just know how badly I felt and I hate to think anyone feels like that, especially with this on top of it. I take 10 mg. Some people take 200mg. It is for depression. I have Xanax prn for anxiety, which I save for scans and big dr visits and when my husband starts going over finances. My psychiatrist told me he’s had a big guy take a tenth of the dose a smaller man needed. And maybe the other classes of antidepressants will be better for you. I felt like a zombie in Zoloft and ok on lexapro. Just don’t stop those SSRIs cold turkey. When I go up to 20 mg on the Elavil I start to feel like I’m on something, but again, it’s so individualized. I was never a happy person, though I seemed it and was always highly functional. Busy and fun, yes, I can be a laugh riot. Oddly enough, this lousy illness has made me take a hard look at myself and let go of a lot of hurt and anger. Well maybe not let it all go, but certainly have some insight into it and work on letting it go. I always thought I’d live to a ripe old age. I’ve had to reinvent how I look at my life. What a price to pay. Anyway before I get too morose, let me just say somethings are bigger than we are, and sometimes we need help. Wouldn’t it be great if you woke up and just felt ok? There is a lot of loss with this illness. It is depressing. Lots of work to get to a place where it isn’t overwhelming. What have you got to lose besides time and money by looking into it? 💕 🐴

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I know you’re right..I will get in touch with someone and see if I can get some help

It’s the pain and feeling useless that’s getting me down

Thank you lots for taking the time to respond..I feel that you understand how I’m feeling and I do appreciate it very much

Barb xx

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Hi Barb.....Nstonerocks has given you so much great information. I am sorry you are feeling so down. Dealing with this diagnosis it is normal to feel down and certainly in the first months for me I cried all the time. However the nurse in me knew that if after a certain period of time I still felt that way all the time then it would have been time to get help. At each monthly visit with my oncologist she always asks about this.

Remember it is not a sign of weakness to have to do therapy or take medications. Fortunately for me I don't feel that way now....sure I still have some days when I cry but that is simply mourning the lost of my old life. I now look forward to little things, a bright and sunny day, walking my puppy and seeing my hubby at the end of his work day. I have taken up some hobbies that I never had time for when I worked fulltime.

Please do get in touch and get some support and help. Take care.

Sandra

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Thanks Sandra

Just had a horrible evening to top it off

My old horse Monty has had colic..had the vet out and she’s not very hopeful so I doubt I’ll sleep tonight..been up to the stables till now and it’s freezing cold..he’s all cosy in his rugs and had painkillers so it’s a waiting game to see if he’s ok in the morning..at least it’s taken my mind off my own worries about myself..2018 a horrible year

Barb xx

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Oh so sorry to hear about your horse. Hope he is ok in the morning. I know they are like family. Please try and get some rest...it is so important for your health. Hugs.

Sandra

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Hi Sandra

Monty the wonder horse has pulled through!!

My daughter was really upset last night so today we had lunch out (and a glass of wine) to celebrate..I won’t be laughing when I get the vets bill!!

Barb xx

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That is wonderful news! I'm so glad for you and Monty and I hope that glass of wine was divine. Ahh I know the bill will probably be high but oh so worth it for your companion. This sounds like a more positive day for you so sending more positive vibes your way so it may continue.

Sandra

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Hey I wanna share my similarities and that I just spent 2 days in wine country in Calif; good post holiday medicine😮. 1st time alone (no kids) for long weekend with hubby. I missed out on outdoor hot tub nite NC 2nd nite it rained (never rains in Calif.

Hang in there! Glad others have offered advice similar to what I’d say so I won’t repeat it thiroughly; but first step is admitting your feelings; next is asking for help & defin definitely not a sign of weakness. If you try something and don’t like it a doctor will wean you off and therapy or animals help as does wine on occasions. I feel for you and wish everyone the best-in my thoughts and prayers.

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That is great results. I would love to hear no change than hear progression.

Happy for you.

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Hi, Barb! Congratulations! This sounds like good news to me.

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Thanks Dianne

I just hate that us ladies now have to spend the rest of our lives reliving this worry about scans/results every 3 months or so..I would love to brush it under the carpet and forget but obviously that’s never going to be the case

Barb xx

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It's hard to say, Barb! There are a lot of immunotherapy treatments in the works right now and, if we can live long enough, maybe we'll be around when there are personalized vaccines. I read a Time magazine article recently in which Dr. James Allison, one of this year's co-recipients of the Nobel Prize in Physiology or Medicine, said, "All cancer patients will likely receive [immunotherapy] in five years, so it's going to be curative for a lot of them." I think there's a lot more hope out there than there used to be and that cancer treatment is undergoing a revolution.

If you are State-side, I wish you a Happy Thanksgiving!

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Hi Dianne

I hope you’re right..but did he mean patients with metastatic disease?.. or just early grade cancers

I live in UK so don’t do the thanksgiving thing but do enjoy yours

Barb xx

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Good question, Barb! I believe he meant both. The article is actually about the first successful immunotherapy treatment for MBC. If it can happen for one person, there's a chance it could happen for many others. We live in exciting times!

Thank you for your good turkey day wishes!

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Poor turkeys lol

Barb xx

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:)

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That article about immunotherapy by Dr Allison was in the Sunday Times today..interesting stuff

Barb xx

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Thanks for letting me know, Barb! I'll have to check it out. I should have mentioned in my previous email that what distinguishes this new research is that it was effective on solid tumors, as opposed to cells alone, as in diseases like leukemia.

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Your results sound great Barb. Stable Mable is very good. I don’t get tested for tumour markers. I’m relieved really as I’d only stress about them. Apparently they can flare as tumours die off too.

I hope my results tomorrow are as positive as yours. I have a feeling they won’t be. I’m convinced I can feel my liver and I have this weird vein thing at the side of my rib which is quite tender. Goodness knows what treats that holds. Xxx

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Hi there

Oh I do hope you get some good results tomorrow..interesting about the marker thing..I do focus on it and yet I’ve been told on this site several times that they’re not that significant..in some ways I wish I wasn’t being tested for them..something else to whittle about!!

Are you on the Ibrance letrazole regime?..do you have liver mets?.. sorry I’m asking questions but wondered why you thought you could feel your liver

Let’s hope it’s nothing

Barb xx

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Hi barb.

Yes, I’m on letrozole, zoladex and Ibrance. This will be my first scan since starting the regime in June.

Liver mets. I think as scan time comes around we tend to focus on every niggle and our minds go off wandering. X

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So it’s early days for you too

I started letrazole in May and Ibrance in June..coping reasonably well but sometimes night sweats are a pain..

I do hope you don’t get these

All the best to you Ange

Barb xx

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Yes barb. The night sweats are awful. I feel like I’m swimming some nights. The worst thing for me at the minute is a very sore nose. 😳 random, but it feel like there are thorns growing up my nostrils. I’ve never heard of anyone else having this as a side effect, so I guess it’s just me.

I have to be different. 😂

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I think mouth sores or nose sores are similar as they are both the same mucous membranes but mouth sores seem more common..I’ve had them only once and a crop of cold sores..looked a sight!!

From what I’ve gleaned on this site..it seems symptoms do improve after a while..maybe our bodies just get used to them

Barb xx

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That’s interesting. It makes sense when I think about it.

I did have a cold sore a couple of weeks ago too. First one in my life and a white spot on the back of my lip. I just thought it was because I was run down.

It’s good to know the drugs are definitely having some effect then. X

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My onc perscribed remifemin or effexor for night sweats!

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Yes they do! Good luck with scan! Prayers and love to you!

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Thank you. I’m going to ask about remifemin. X

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Ok. Good!

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So good to hear your good news.

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Thank you

Barb xx

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Hi Barb,

Congrats on your scans results, stable is good! Markers can fluctuate and are not always reliable.

Sending ❤️

xx Jade

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Thanks Jade

Barb xx

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Great News ! Happy for you!

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Omg Barb, so happy for you! God bless! Love, Marianne!

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Lovely news Barb. Congratulations!

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Stay positive Barb ! It’s going in the right direction and it’s still early days ...And don’t stress over the tumour markers as we have seen lots of people on here who have proved they’re not always relevant ...I found out that I am one of the 25% that tumour markers don’t change ie. stay low ! Go treat yourself to a new book and some dark chocolate (Godiva 70 % is my treat!) as a reward for getting this far...one step at a time ! x

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Thank you Teddie

I’m really struggling to stay positive..all I can envisage is worsening pain and a crap life..sorry just being honest

I do love dark chocolate as well..85% preferably

Barb xx

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Barb, are you able to exercise a little more yet after your op ? I find that It does make you feel a lot better mentally ! And like you , I’m a realist and not one for the therapy route ... tho’ I know it helps many ! At my twice weekly exercise classes for breast cancer ladies we have been using Thera-Bands (the extra thin white ones are the easiest to start on )which are good for stretching and simple exercises ... I have my own and do a bit each day as there are lots of classes on You -Tube to follow at all levels , even seated ! Nordic walking (with poles) is another good easier exercise , if they have it in your area ,(at Haven here) , and weather permitting ! Or Xi Gong (Tai chi ) which I have done at Haven is relaxing and not strenuous . Thinking positive thoughts x

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Barb I know is hard to be positive, but it is great that your scan results area good. It is not easy to live with this MBC diagnosis. I have good and bad days, Last week I have a bone scan and it was great so I have to thank God that my medication still working even I have so much pain on my hips. I had depression for years and on 2014 with my diagnosis of breast cancer came back so I went to the psychiatrist and therapy and I was taking Citalopran and I worked for me. This time I am ok but sometimes I have anxiety and It happens in the morning when I wake up then I keep busy and not focus on MBC and it goes away, take care and God bless you

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Thank you for your kind words

For me also..it’s the mornings when I wake up and remember the situation I’m in..in fact the only time I’m at peace is when I’m asleep..and I don’t know then lol

Barb xx

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I’d say that is a win. Happy Thanksgiving 🦃🍁.

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Hi Barb,

I had the same. My markers dropped form 72 to 57 in June, but started to go up again, now 66. The PET scan I had in September showed a "partial response" to treatment. The spot on my sacrum went from 10.something to 6.something and none of the other spots lit up at all. DR said this was good news and the markers were just " fluctuating and semi stable " but I still wish the markers had stayed down. He doesn't want to draw the markers till December and will order another PET then. Between Dr appointments bloodwork and tests I almost feel like this is the new full time job. Crazy. I guess once we know that It is there we just have to accept that as long as it does not spread it is good news. The new normal, right?

Do whatever keeps your spirits up and "take the win".

Lisa

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Hi Lisa

Thanks for your input

It seems from what the ladies say here that markers can fluctuate and not to read too much into them..I wish my oncologist didn’t do them..something extra to worry over

All the best to you

Barb xx

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Super news Barb and well deserved.

Gigi

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So pleased for you Barb. Good news always a filip to us all.

I worry about markers too...different doctors put different spins on them. Mine measures CA 15 only.

Red wine, I was told to stay on Ibrance. Always told it was good for my blood.

BR was brilliant and I really enjoyed a star is born too.

Best Gigi

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Off red wine.

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Oh dear ☹️🍷

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I like my bubbles but too much slips down too fast!

It’s all a balance but I can be a bit heavy handed.

Bitch about brain mets but hopefully zapped. Will know in 3 months.

In Germany where I had treatment and about to be met by eldest daughter who thinks I need help getting home astraining it.

Hopefully have a half day shopping when she arrives as the Christmas decorations are beautiful here.

Stay well.

Gigi

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