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Plan to decline last chemo

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nume
nume Member Posts: 81

Hi all,

5 days ago I had the 15th infusion ...and it`s been hell. Felt extremely bad especially after having the Neulasta, with bad muscle and bone pains, continuous chills(scary especially after neutropenia last month), foggy brain, burning skin on my face, back and shoulders, liver and spleen pain. I am also anemic...Today was the first day to get out of bed for more than 10 min.

I decided to see the surgeon next week and ask if I can decline the last chemo and go for the surgery before it was planed.

Was anybody in this situation?

XO

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Comments

  • pupmom
    pupmom Member Posts: 1,032
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    I never had chemo, but checking with your doctor is always advisable. Good luck!

  • mountainmia
    mountainmia Member Posts: 857
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    It's a very reasonable question but seems like it's better suited to the oncologist than the surgeon. Also remember, you are the one who gets to decide either way. Good luck. I'm interested to hear what the doc has to say.

  • lw422
    lw422 Member Posts: 1,410
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    Nume--I can commiserate. After 12 Taxol and 2 AC treatments I told my MO that I just couldn't do anymore AC. I was beat down and the SEs were awful. He talked me into a reduced dosage for the remaining 2 and I finally agreed to try. Happily, the reduced dose was much easier to tolerate and I was thrilled to learn that I had pCR from chemo. I'm glad I stuck it out, though who knows whether I'd have had the same good response without those last 2 treatments.

    Good luck to you and hang in there. It's hell but it was worth it to me. Take care.

  • AnnaMO
    AnnaMO Member Posts: 12
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    You can discuss your options with your oncologist, where you will weigh the pros and the cons. A/C knocked the hell out of me but I felt Taxol suck me dry and was losing more and more sensation in my hands (neuropathy). Also, discussed the extreme pain after Neulasta. It was like someone had beaten me with a bat all over my back. It turned out my white blood cell count was extremely high. (I think it was 4x higher than normal.) This was causing the severe back pain. They decreased my dosage was a huge help and there wasn't any of the regular pain. I wish I had spoken up sooner. Also, it helps when the docs and nurses look at your numbers when they run all those blood tests. : / The answers were right there in the lab results.

    So back to your chemo question - talk to your doctor. Rather than waiving my last round of Taxol my onc cut the dose in half. Also, have your nurses and/or doctors look at your wbc to see if you count is high so the Neulasta dose can be decreased.

  • ruthbru
    ruthbru Member Posts: 47,238
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    For your last chemo, you might not need a Neulasta shot (because you don't need a boost to get knocked right down again). After my last round, I was able to choose whether I wanted one or not.

  • nume
    nume Member Posts: 81
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    Thank you all so much for the advice Heart

    I decided to take the last infusion but didn`t get the chance. 3 days before I was rushed to the ER for Hyponatremia(severe loss of NA/Salt). I was in the hospital for 10 days. Got out yesterday. Doctors could not figure out why it happened but it`s been decided that Keytruda was the culprit and as a result of Hypophysitis I will probably take cortizol for the rest of my life. Not sure because actually 15% of population has a microadenoma. Fortunately I have no brain or lung mets but I have few(3) very small nodules on the lungs(the biggest 2,4mm).

    Out of hospital I rushed to see the surgeon because I am already 1 month out of chemo. Monday I need to have the PET Scan and on Tuesday I will meet an internist to see what can be done with my anemia(8.5 hemoglobin). Did anybody go into surgery with such low hemoglobin? I am scared of surgery now(mastectomy left) but I try to stay positive and prepare...

    Any advice is soooo appreciatedHug

    Annamo, did you have PCR? Did you have any positive lymph nodes?


  • ruthbru
    ruthbru Member Posts: 47,238
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    Gosh, nume, I am so sorry. I don't have any good advice, but want to send out my best wishes.

  • nume
    nume Member Posts: 81
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    Thank you, ruthbru!

    I am now in a big rush to complete all examinations before surgery... I am already late, 5 weeks since last chemo.

    Today I had the Pet and I am going through scanxiety :)

    XO

  • ruthbru
    ruthbru Member Posts: 47,238
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    Good luck! They will be all things that will be good to be BEHIND you!

  • nume
    nume Member Posts: 81
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    ruthbru,

    Thank you for the encouragement! I really needed itNerdy

  • elderberry
    elderberry Member Posts: 1,067
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    nume: Scanxiety. It is just awful. There is nothing in your head that can make the gnawing thoughts away. Then the wait for the results. I hope you get them soon.

  • vlh
    vlh Member Posts: 773
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    Ohmigosh, Nume, I'm so sorry that things went off the rails as they did!

    I just read your note & wanted to let you know that I skipped my final Taxol and had numerous issues that both delayed the start of my chemo and required an extra week off twice during treatment. I'm due for another mammogram, but as far as I know,, I'm still cancer-free more than 6 years after diagnosis with very aggressive triple negative disease. I had surgery before chemo and didn't get as anemic as you so can't speak to that question, but hope that the rest of your treatment will go more smoothly.

    Lyn



  • ruthbru
    ruthbru Member Posts: 47,238
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    My cholesterol went up during chemo too, and for the same reason, I was just eating what I could stand; which was mostly mashed potatoes! Don't worry about that now,get this behind you first.

  • nume
    nume Member Posts: 81
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    Hi all!

    I had the surgery last tuesday: double mastectomy with reconstruction and total lymphadenectomy(left). They kept me in the hospital to decrease the cortisone to a manageable doze that I can safely take home. Today was the first day without painkillers.

    Cried for 48 hours after finding out all the left nodes have been removed. Firstly because I didn`t know I had any node involvement(none was ever mentioned). Such a radical procedure makes me think things were worst than my CTs, PETs and ECOs have been showing. Second of all I was thinking of possible complications from now on.

    I`ve been acting totally crazy and out of character, telling all doctors and nurses I am upset I had this (lymphadenectomy) procedure done without being told in advance about this possibility and by doing it they decreased the quality of my life. I am so embarrassed of my behavior... Truth is it was the shock of sudden possible change in staging and forward treatment... plus the huge cortisone dosage(with the depression and aggressiveness it triggers)

    The surgeon told me 23 nodes have been taken out, he thinks 3 of them were over 2,5cm each ...But he did`t see them well enough...

    All the enlarged nodes have been affected? Is it possible for the 3 of them to be enlarged without being involved/with cancerous cells? Is it possible the PET was mistaking(by being clear)?

    I should take a break for 2 weeks now waiting for the pathological report but I simply can`t. ...It`s been said I could avoid radiotherapy but probably now it`s not an option anymore...

    I`ve been reading bits and pieces on the Xeloda thread but I can`t concentrate. I am so sad after the glimpse of hope my life could return to normal everything changes again... So tired of this rollercoaster

    XO


  • ruthbru
    ruthbru Member Posts: 47,238
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    I am so sorry you are going through all this. I had 11 nodes removed & haven't had any problems; so not everyone does. Hang in there!

  • scaredme
    scaredme Member Posts: 65
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    So sorry that you are going through this. I had a similar situation, but they took the rest of my nodes out in a separate surgery after having 3/3 positive with LVI and extranodal extension found with the sentinel node biopsy. I was then upstaged and opted to go back and have a bilateral mastectomy when I had the axial node biopsy done. Turns out that they were right to do the axial since they found 5 more positive nodes. I then had AC-T chemo and radiation.

    Almost 2 years after ending radiation, I am doing well. I have slight lymphedema on my left side, but I wear a compression sleeve and it is very manageable. I also don't regret any decisions that I've made.

    Hugs to you. It will get easier.

  • threetree
    threetree Member Posts: 1,470
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    Nume - I don't think you should have to feel bad at all for the way you've been talking to the doctors and nurses, but I get it, because I do similar things. I would think they are aware that some patients react like this (legitimately) and know how to "take it" so to speak. If not, I think they might be in the wrong business. I for one can't believe they never told you just what they were going to do. Also, the extent of your surgery and the fact that you are on such high doses of steroids would all contribute to your crying and overall situation.

    Interesting that they are keeping you in the hospital until they lower your steroid dose. I have a friend who has stage 4 lung cancer and she was given a super high steroid dose, as an outpatient, after irreparable damage from Keytruda, and she got very "forward" with the doctors and nurses. She was at home and eventually got very aggressive and combative with everyone around her and she eventually had to be taken to the hospital by the police. She eventually recovered mentally and is her old self in that regard. Those steroids are nothing to mess around with. This story was not meant to scare you and you do not sound at all like you got to the level my friend did, but it wouldn't surprise me if the steroids have been some of the reason for the behavior you have described as being out of character for you. My friend could absolutely not believe the things she said and did in height of her "steroid psychosis" (yep, that's what they call it when it gets to that level - the rest of us just get a little "high" with them at lower doses). I think you will feel better over time as some of the steroid affects wear off.

    I am real sorry that this happened to you, and yes, I totally understand the being so sick, tired, and frustrated over the roller coaster ride of this cancer business. Sometimes I don't know how we all deal with it as well as we do. After all you have been through, I think you are well entitled to have a good 48 hour cry and be more than frustrated and angry.

    I wish you all the best and hoping for a more positive pathology report than you think you might get. We just never know until those results come in. Just know that there are so many here who understand and are happy to hear you out and offer support. Best to you, Nume.

  • nume
    nume Member Posts: 81
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    I calmed down now. What else to do?!

    ruthbru, thank you for following my thread and reassuring me!

    scaredme, your story helped me so much! ...If I knew it was to happen, that there was the slightest risk, I would have mentally prepared...

    threetree, they didn`t want to keep me in the hospital. But I was already 3 times in the ER with adrenal insufficiency caused by Keytruda. I had the surgery kind of late because of it, beginning of the 7th week after chemo. They had to give me huge cortisone doses to prepare me for surgery and the following two days. I could`t leave on that dose with no way to safely decrease it at home. I am in Europe and I asked to pay for another 4 days in the hospital, for assistance to decrease the dose... Where was I to go as ontological patient, with no immunity, adrenal insufficiency, after major surgery, home on Friday before the weekend... (Just writing it makes me realize how badly my health declined during the last 2 months. It actually begun with my first post on this thread, not even 2 months)... Did your friend recover at all from Keytruda damage? Was it the same problem? Is there any hope about it?

    Every time I come back to this forum I wander how can you do it... and I am so grateful you are here for me... I can see my husband tired of everything that happens, depressed because he can`t help... I am hesitant of telling him exactly how I feel and I just can`t go back to life as it was.

    XO

  • threetree
    threetree Member Posts: 1,470
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    Nume - Glad to hear that you have calmed down a bit. I find that most of the awfulness of all of this cancer business comes in waves. I'll have bad crying days, bad days of extreme physical and mental fatigue, and then days when I am in a good mood and don't have a lot of pain or tiredness. It really varies, but is so unpredictable.

    My friend recovered from the "steroid psychosis", but she did not recover from all of the Keytruda damage. She has been left with some sort of autoimmune disorder. I can't remember exactly what it is called, but I know that it is considered rare. It's not Scleroderma, but it is something similar that affects your skin and collagen, etc. if I remember. She said that her arms seemed like they had "turned to wood", among other things. She has a lot of other problems now too left over from the Keytruda and I can't remember them all. I do know that she cannot bend over and put on her own shoes and socks anymore, and she also says she can't wipe herself when she uses the bathroom. She has been an avid gardener and says that now she can't get out there and really truly garden anymore. I've suggested to her that she see if she can get some kind of in home (and out in the yard gardening) kind of help a few hours a week. I think that here in the US, Medicare will allow for a limited amount if you qualify. I haven't spoken to her for a couple of weeks, so am not sure just what the situation is now, but she was told that the autoimmune disorder cannot be cured and she is stuck with it for life.

    She had been taking the Keytruda for about 2 years when she started to have problems, so I don't think anything this bad will happen to you at all. It looks like you only took it for a couple of months.

    So sorry that you weren't able to stay in the hospital, even if you offered to pay. It is good though that you have your husband there. I am alone, so I worry a lot about just what I would be able to do if a real serious situation like yours arose. Yes, I think that husbands can get very frustrated, and even depressed like you said, because they can't help, and they want to so desperately. Unfortunately they're not always pleasant about it. My friend's husband is real helpful to her sometimes and then at other times he gets so frustrated and down that he gets angry or sarcastic with her (he has stage 4 esophageal cancer). It's another one of those rollercoasters with lots of ups and downs.

    Yes, the other people on this forum are such a big help to so many of us. I just love so many of the people on this forum - they are the only other ones who truly understand.

  • scaredme
    scaredme Member Posts: 65
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    I am glad that you are feeling better. I fully understand the shock. I felt that way when I read my first pathology report with all of its scary words! I honestly thought that I'd be one of the people with just a lumpectomy and radiation with no lymph node involvement. Not sure what I was thinking or why I had convinced myself of that, but I turned out to have a much more complicated situation and had over a year to go until I was done with active treatment.

    That said, you can do this. None of us think we can, but we are amazingly resilient and strong. You will do it because you have to! Hoping that your pathology comes out better than mine did, but keep in mind that the purpose of radiation is to get rid of any residual Cancer. It sucks to have to continue treatment, but radiation is super easy compared to what you've already been through. (My husband jokingly referred to mine as "Tanning")

  • ruthbru
    ruthbru Member Posts: 47,238
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    Medical people have seen every sort of situation so I wouldn't really worry about how you reacted; it's perfectly normal. It is an unbelievably stressful experience. Does your husband have any friends he can vent or go out and play golf with (or whatever he is in to)? I told my DH that he COULD NOT fall apart because I already had enough on my plate (which I feel bad about saying now, but it was true). He had a good friend and a sister he could talk to and share his worries with, which I am sure helped him cope. It seems like things will never, ever, get better right now; but once you are through treatment and time has passed (several years in my case), you really do start to feel 'normal' and will be surprised when there are days that go by without you even thinking about cancer.

  • nume
    nume Member Posts: 81
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    Hug

    ruthbru, it`s hard because my husband works abroad. He came home for me at the beginning of February just in time to witness the worst part.(I was ok during the first 5-6 months of chemo). Right after surgery he came in to see me crying, all cortisone puffy and red... I could see he was holding back tears and I told him exactly the same thing as you did: please don`t fall apart, I can`t deal with you falling apart. Of course I felt bad 5 seconds later... He doesn`t have good friends there and the ones he had here... well, are not so close anymore... He is passionate about his job though and the few hours he works online everyday are helping him to keep his mind occupied with something else... I so hope to leave this all behind...

    scaredme, you understand me completely! Yes, I will do everything I can. It`s not the radiation that scares me but the fact that for triple-negative, well... lymph node involvement(especially more than 1-2) is statistically bad...

    threetree, I had 6 Keytruda infusions... and on the third one a bad reaction that was signaling the intolerance but my doctor didn`t have any experience with it and didn`t think of it as such(she is mostly dealing with early stages and I think I was her first pacient on pembrolizumab). She thought my port was infected and kept me on it. It would have been worth it if the PET was correct ...Most of the time I`m alone too... and I was ok with it until now. For the most of the last 6 months I was immersed in studies about this disease. This has to stop. It`s not helping. ...Yesterday we realized none of us noticed the celebration of 20 years of marriage passed by a few days ago... He told me his mind can`t really adjust to what`s happening to me... Like you, I don`t think anybody, who did`t deal with it, can really understand.

    XO

  • ruthbru
    ruthbru Member Posts: 47,238
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    I researched everything like crazy; but once I decided on a plan, I quit as I was being drawn to the 'worst case scenario' articles/posts etc. Try to do some 'normal' things. Get together with or call friends & ask them about their lives, watch funny movies or series on TV, immerse yourself in reading (fiction) or drawing or whatever other hobbies or interests you have (or would like to develop). There are good mediation & yoga practices online you could try, I walked a lot (exercise is the best non-medical thing we can do to lower the risk of recurrence). Either go out, or order in, a wonderful anniversary meal. Talk about some trips you two may want to take, or other fun things you want to do, when you are done with treatment. I think looking further ahead making plans is very good for a person mentally.

  • threetree
    threetree Member Posts: 1,470
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    Great ideas, Ruth!

  • nume
    nume Member Posts: 81
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    Hi all!Heart

    I had pCR! My anatomopathological report came back negative today, both for tumor and 23 lymph nodes. It didn`t sink in yet. I went for to see the endocrinologist, asked for my last week blood analysis and the receptionist asked me if I want the surgery anatomo pathological report printed too. ypT0 ypN0

    All the side effects, adrenal insufficiency for life, the lymph-edema that will sooner or later appear... it was all worth it.

    What now? I had double mastectomy so no radiotherapty. but do I need Xeloda?

    Thank you all so much for the support!

    XO

  • nume
    nume Member Posts: 81
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    Hi all!Heart

    I had pCR! My anatomopathological report came back negative today, both for tumor and 23 lymph nodes. It didn`t sink in yet. I went for to see the endocrinologist, asked for my last week blood analysis and the receptionist asked me if I want the surgery anatomo pathological report printed too. ypT0 ypN0

    All the side effects, adrenal insufficiency for life, the lymph-edema that will sooner or later appear... it was all worth it.

    What now? I had double mastectomy so no radiotherapty. but do I need Xeloda?

    Thank you all so much for the support!

    XO

  • lw422
    lw422 Member Posts: 1,410
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    Wonderful news, Nume!!

  • scaredme
    scaredme Member Posts: 65
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    Excellent news!

    I wonder why the lymph nodes were enlarged. I guess you'll never know..

  • ruthbru
    ruthbru Member Posts: 47,238
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    Great news!

  • nume
    nume Member Posts: 81
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    Hi all Hug...and can`t thank you enough for the support!

    scaredme, the three enlarged lymph nodes were fat...This is what the surgeon told me when I asked. I can`t really understand why because I am not fat ...Or at least I wasn`t. Now I`m eating all the time because of the Hydrocortisone and the constant fear of hyponatremia coming back.

    I have only one drain left that will probably come off tomorrow. The left breast, where the tumor was and where I had all lymph nodes removed, has hard patches above the reconstruction. Is it normal? Are scars forming so quickly after surgery? ...On the same breast there is 1cm tissue, right by the suture, that could turn to necrosis. The plastic surgeon told me it`s a very small surface and if needed she could take it off with a short procedure, no general anesthesia.

    Tomorrow I have two appointments: with the endocrinologist and the plastic surgeon and next week I`ll meet the oncologist. It feels very strange at this point not to have a term for a treatment. I am kind of afraid to detach of the constant thought that I had on the back of my mind for the last 8 months.

    XO