Stage 4, year 5, tx 6: candid, caring connections

MameMe
MameMe Member Posts: 425
edited June 2018 in Stage IV/Metastatic Breast Cancer ONLY

I have been in some kind of transition lately, due to progression during my last 2 chemo's. For the first four years I felt no pain, tolerated treatments well and found it relatively easy to conduct my life and maintain my interests. Now its clear that chemo is not working as well and I have a reduced QOL, meaning more side effects from chemo and from cancer itself. I am sure others have hit speed bumps like these. I have questions about everything, like time left, when to stop chemo, how to talk to family without scaring them, and so on. My hair has gone, thanks to chemo that didn't work, I am pale, and its hard to look normal. I will adapt, but would love to hear from similarly affected others

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  • blainejennifer
    blainejennifer Member Posts: 1,848
    edited May 2018

    MameMe,

    I'm in rather the same position. The first five years were easy. I had energy, and I could get stuff done. Now, due to anemia from the Doxil, I am sofa bound. I'm also recovering from cataract surgeries. I'd do it all over again, mind you, because seeing clearly is going to make a huge difference in QoL, but for a month I have to minimize bending over or lifting anything over ten pounds. My eye surgeon is being extra careful because he's never done anyone on Doxil before.

    I am stable, but that means I have active lesions that aren't getting any bigger. I feel them, though. I have to plan going upstairs, because it costs me - shortness of breath from the anemia, etc. My spouse is slammed at work, and really can't help around the house because he's exhausted too.

    One side effect of the cataract surgery is that I can see dirt now (someone on the list warned me about that, and seeing wrinkles clearly). I mean, we aren't hoarders, but we haven't been able to put things away well because we haven't been efficient with the cupboards. You know how it is. We've decided to get fancy and hire a cleaner once a week, for the time being.

    It is hard when you don't feel yourself. What has your MO said about the situation? Can they offer any medications to help you navigate the SEs? For example, I would simply disintegrate into a loose pile of cells if I didn't have Concerta. It is a total lifesaver.

    What makes you think you are approaching the finish line?

    Cyber hugs,

    Jennifer

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  • MameMe
    MameMe Member Posts: 425
    edited May 2018

    Hi Jenn, Great to hear from you and that you are feeling some of the same things I am. I love that you did cataract surgery, despite the heightened focus on house dust! Our place is pretty relaxed, and I need to see about a cleaning person for at least a big annual clean out, and maybe biweekly work. I was never a motivated housekeeper, would much rather read, but now I am parsing out energy carefully, and want to give that over to someone else.

    Its tough to feel real fatigue that doesn't seem to lift. Sometimes my mattress is my best friend, it feels so good to stretch out and be physically supported. I think that will be the new normal to me, unless there is a miracle. I do want to walk as much as I can for fitness, still.

    I just spoke with my oncologist, as I am at chemo now. She said that one year was realistic for me, and that she would would evaluate the Gemzar after two more doses. Its a help to me to plan how to spend my time.

    I think I am adapting in stages to having a plan for coming months. Today I just feel a bit better. Maybe there are some others out there who are in a similar place?

    Take care! Hugs, Mame

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  • blainejennifer
    blainejennifer Member Posts: 1,848
    edited May 2018

    MameMe,

    Please take this with a huge grain of salt, but I think you might need a second opinion.

    You are grade 1/2, meaning that you have an indolent cancer with a low level of replication. So far, the cancer has stayed out of your liver and brain? There's anecdotal evidence that if it hits your liver, it's a worse prognosis than if it hits your lungs. Of course, any time there's a central nervous system finding, everyone starts getting the long faces. For those of you with liver/brain involvement, please feel free to school me, as I have liver mets.

    I'm not seeing many anti-hormonal treatments in your signature. Are you like me: ER/PR+, but still doesn't get much traction from the AIs? Despite that, I had a great 14 month run on Faslodex, so MO and I have decided that we are still going to try hormonal jiggery pokery.

    So, by the little cancer calculator I keep in my head, one more year? Huh? And you are four years from your Stage 4 diagnosis? Maybe you need an MO with a newer, fresher approach? I'll bet I'm really stepping on your toes here, and that you have a great relationship with your MO. I'll take the risk.

    I feel you about the fatigue. Our sofa is only a year old, but my fanny print is clearly distinguishable. Not the spouse's, just mine. Often, I throw a pity party because I want to accomplish things, but my energy level means I get to pick one thing to do. Prudence demands that the one thing be responsible and boring, like taking out the trash, rather than going to a yarn shop and fondling skeins. Believe me, I only pick the responsible stuff if I absolutely have to. Yesterday, I had to big foot the trash (it involves being a human trash compactor), so that I could go play in the garden.

    Every day is a gift, and fatigue makes it harder to open the package. What specific symptoms/issues is your MO pointing to when she rolled the cancer dice? I'm asking for a friend, you know.

    While you are at chemo, why don't you ask your MO for some ritalin for the fatigue? Some folk are enjoying Provigal too.

    Solidarity, sister!

    Jennifer

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  • MameMe
    MameMe Member Posts: 425
    edited May 2018

    Let me see if I can address each of your questions. If I had tolerated hormonal tx I think I would be in a very different place now. I have a history of clinical depression and migraines that interacted badly with AI's. I think Taxol was very effective, knocking back a choroid met,and most of the other ones by a third. Xeloda worked well for 2 years. I have scalp mets and subcutaneous mets in torso that have grown in the last two months, while on Doxil and then Halven.Once mets are larger, they seem to increase exponentially. My onc consults with Dana Farber and a statewide team, also. I don,t feel at all that she is catastrophizing. I am worn down with treatment, and am needing a n estimate of my remaining time in order to to prioritize $, energy, projects, etc. As for meds, I have been including a stimulent with an antidepressant for years. So, time for dinner..

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  • intothewoods
    intothewoods Member Posts: 449
    edited May 2018

    MameMe,

    I understand wanting an estimate of time left. I am into my 4th year having a lone bone met and local recurrance diagnosed in Feb of 2014. Liver mets in Sept 2017. The first three years I worked full time and life was normal. I I recently had "that conversation" with my onc. He said he thinks a year or two and said he should have had this convo earlier. He said I could go into liver failure at any time. (I will ask him to elaborate on this more when I see him next week as my liver function tests are fine.) At any rate, I was glad I asked. It didn't freak me out but helped clarify what I needed to do. We plan for the worst and hope for the best. I immediately started estate planning which feels great, and vacation planning! I am also feeling more fatique than I have after the hormonals stopped working and we started chemo. I don't like having to prioritize what I can do and some days I just don't get anything done. Some days I'm really over the side effects and start to feel beaten down. But no one knows how things will go and I am happy to say that today I started my 4th round of Xeloda and I missed a call from my onc's nurse. Her message said she was calling with good news which must mean than my tumor markers are down. I'll call back Monday. This last cycle of Xeloda was easy relatively speaking and I felt pretty good.

    Jennifer, I'm askin for ritalin! I took it for a short time some years ago when I needed a boost to get me through a really taxing time at work. Do you know of an anti-depressant that has a stimulating efffect? I'm weaning off Effexor and not sure I will need an anti-depressant (I'm retired from a very stressful and toxic work environment and the anti-depressant was more for anxiety than depression) but if I do it would be great if one had that effect.

    Lisa

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  • JFL
    JFL Member Posts: 1,947
    edited May 2018

    Lisa, Wellbutrin has a stimulant effect. You will start feeling more energy immediately. I take it for treatment-related fatigue and would highly recommend it. Good luck going off Effexor. That is a very tough process but worth just sticking it out in the end. Taper as slowly as possible and expect a few rough days, maybe a week, when you finally go off it completely. No one tells you when you start Effexor that it entails harsh withdrawal side effects when one stops taking it. I find it unethical the drug manufacturer does not include a black box warning about this, seriously.

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  • MameMe
    MameMe Member Posts: 425
    edited May 2018

    Lisa and JFL, Thanks for adding your experiences. I have had Wellbutrin in the past and agree that it may be just the ticket for you, Lisa. Worth a test run, maybe? LIsa, I also was in an extremely stressful job for the four years prior to mets dx. I can't imagine that that didn't crank up the mets formation in some way. I have savored every minute of my slightly early retirement. JFL, I have used effexor for. many years, as it was the compound with the best fit for my brain chemistry. It is crucial to taper down twice as slowly as docs advise, and if you have the patience to do that, I suspect you will be fine. Prozac can be used to help the tapering process, under your doc's care, I believe. I am in awe of your courage in dealing with bc at 30! Hang in there, girl.

    Xeloda worked well for me once the dose was right. I only took two tablets twice a day after reducing from three and four. Fatigue, but little hand/foot issues. Kept me stable for 2 years. Back to back chemo eventually wears the system down, I have found. I was gung ho for the first 4 years, and perhaps will be again. With Gemzar now, who knows how effective it will be and how I will eventually be feeling. I just had dose # 2 of first round. It is necessary for me to take omeprazole and ondansetron occasionally now, which I had not needed since Taxol. They work really well when I remember to take them!

    About "the conversation": I liked how you put that, Lisa! I avoided for the past four years asking about time left, and my onc never brought it up, beyond the usual, " Nobody really knows what kind of time a given patient may have..." . I did ask her specifically this week to tell me her thoughts and observations. It was a huge relief for her to be candid with me, and to validate my understanding of how my body was responding to treatment now. I felt that we were on the same page, truly working as a team. Our area has a wonderful palliative care doc, spunky, warm, smart, who has met with me twice, now. She works closely with the onc, also. When I decide to end active tx, ( but then its actually all palliative care in stage four, anyway ) I feel that I will be working with another team for that stage of my care, and that will be a team whom I have already met and feel comfortable with.

    As for today, well, its a bit of housework now, and some laundry, and hopefully a walk later on. Good weekends to everyone, Hugs, Mam

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  • MameMe
    MameMe Member Posts: 425
    edited June 2018

    Just checking in on JFL, Lisa and Jenn. How are you all doing? Things feel better for me after a reduction in dose and a change to every-two-week infusions of gemcitabine. They added decadron to the IV, and this last dose was so much less destructive of my energy. I don't feel sick from the chemo now, which was really dragging me down before. I was able to resume walking, starting at .50 miles, to 1mile, to 2 miles on Friday. After a month of no walking, this has been so encouraging. Now, my hope is that I get stability from the chemo at this dose. I want to maintain my " performance status", which is possible now.

    Anyone else who is managing the juggling act of how much chemo for how much longer, etc, please join in.

    Warm hugs, Mam

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  • yangtan
    yangtan Member Posts: 75
    edited June 2018

    I will be four years in August for mets and have been in treatments all these while. Lately I am on cmf and my bone marrow has not been behaving. Last month WBC Was0.14.this month it was o.4. I am wondering how Long more I can tolerate chemo. Although I am Er positive I failed Afinitor two years ago and also Faslodex recently. N now has two spots of mets on my bones.

    My life has been centred around my treatment and side effects. But I did take time earlier years to travel. My recently it’s like with such Low blood counts I am house bound. Yes I am thankful for supportive family but this is a very lonely disease. I no longer attend any church groups or get out.

    I was coping with pretending to keep house last three years but I have since surrendered and got a live in helper. Finally I got a clean house but I am so tired that I spent most time in bed.

    Well I am thankful to God for all the covering n sustaining power. Could not help wondering how On Long more. But I hope to attend my daughter graduation n my Son wdd

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  • MameMe
    MameMe Member Posts: 425
    edited June 2018

    Hi Yangtan, I can relate strongly to what you shared. Its just very hard, at times, feeling tired and giving up the things we used to do. I pretend to be a homemaker, too, something I was never very good at. After I retired in 2014, I thought that would be enough. Sometimes it is, but not when I feel sick. Where did you travel? Was that a good experience? Lately I have been planning just a few days at a time, and am connecting a bit more with old friends. I can visit people who live nearby, and its been really fun. Our kids live across the country, and I want to go see them in their homes, but its a long trip and one that I keep putting off. I do read quite a lot, and most of the time I am glad to be home. You have been coping with stage 4 for a long time! That is such a lot of work. You should get a medal.

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  • MameMe
    MameMe Member Posts: 425
    edited June 2018

    Hi Yangtan, I can relate strongly to what you shared. Its just very hard, at times, feeling tired and giving up the things we used to do. I pretend to be a homemaker, too, something I was never very good at. After I retired in 2014, I thought that would be enough. Sometimes it is, but not when I feel sick. Where did you travel? Was that a good experience? Lately I have been planning just a few days at a time, and am connecting a bit more with old friends. I can visit people who live nearby, and its been really fun. Our kids live across the country, and I want to go see them in their homes, but its a long trip and one that I keep putting off. I do read quite a lot, and most of the time I am glad to be home. You have been coping with stage 4 for a long time! That is such a lot of work. You should get a medal.

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  • yangtan
    yangtan Member Posts: 75
    edited June 2018

    oh traveling with advance cancer requires some planning and yet be prepared to cancel cos we are not stable n normal like wbc suddenly plunge etc. Firstly travel insurance is more than normal. Then I have to pack a bag of just in case medicine given by my doc. Then I hv to wear a mask throughout the flight especially on cattle class.. I hv not taken any Long distance flight. Next year I will fly business class to London to attend her PhD graduation. Most of time I don’t really want to go anywhere. My Son is busy with work so is just hubby n me and I am quite contented to stay home. I don’t even dare to book advance ticket for any shows cos I never know how my wbc count is like. N when I can I will go ea

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