Completed 4 of 6 chemo cycles and want to quit

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Toughcookie
Toughcookie Member Posts: 12

I've just completed 3 fec and my first docetexol. I thought after getting past the halfway point it would be easier but docetaxol is even harder. Im already experiencing neuropathy and am ready to quit chemo. Has anyone done this? What are the risks? Are there statistics on long term prognosis when ending chemo early? I just don't know how I'm going to survive the next two cycles and if I have long term neuropathy why bother. Not really living up to my user name! Feeling broken.

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  • Swedish_Girl
    Swedish_Girl Member Posts: 13
    edited September 2017

    I had the same treatment, except I didn't have the F in FEC. I agree the docetaxel is harder, but I found it manageable. If you really can't do it your oncologist might be able to change the treatment or just lower the dose. Docetaxel is very effective, but there are other alternatives. Talk with your oncologist, quitting chemo altogether is not necessary even if you choose to not go through with docetaxel. Docetaxel is very hard on you, but also on the cancer...

    Chemo is hard, and my husband basically had to drag me to one of the treatments, I really didn't want to go. And I have been feeling quite well during treatments compared to many others. It's not uncommon to want to give up. You are almost there. Two more to go.

  • Moderators
    Moderators Member Posts: 25,912
    edited September 2017

    Hi Toughcookie,

    Sorry to hear that youve been really struggling with your chemo regime.

    You may find the support thread in the link below helpful in finding out how others are coping.

    August chemo support group

    Wishing you well,

    The Mods



  • NotVeryBrave
    NotVeryBrave Member Posts: 1,287
    edited September 2017

    I was ready to quit after round 3. I remember just being so tired of all of the SE's and worrying about possible long term problems. Wondering if it was worth it, too.

    Probably no one can answer your question. All of the regimens are based on studies. It's possible that 4 rounds is enough for you, but that's not what was scientifically proven.

    I ended up completing what was ordered because I knew that I would be really hard on myself if I didn't and had a recurrence down the road. Of course - I still haven't started Tamoxifen due to my concerns about the benefit vs risk in my case.

    Talk to your MO about your concerns. Maybe they have other insight - a change in the dose or infusion rate, a new option for managing SE's, anything. But at the end of the day - it's your body that you're living with both now and for the rest of your life. You do get to choose.


  • Toughcookie
    Toughcookie Member Posts: 12
    edited September 2017

    Thanks. I'll talk onc about lowering dose or other options. It's day 14 after my treatment so am finally starting to feel human again

  • Kicks
    Kicks Member Posts: 4,131
    edited September 2017

    Talk with your Dr about how you feel and your concerns.

    My TX plan was different than yours. (As was my DX.). I did 4 DD A/C neoadjuvant with no issues of concern. The 12 weekly Taxol adjuvant were not as nice. When I saw my Dr before my 10th Taxol, I complained about how completely and utterly EXHAUSTED I was - just existing either laying in bed or on the couch in front of the TV. He told me that the Chemo had done about 85% of what it could do, so it was up to me and he was putting in a order saying IF I wanted to quit - he was 'approving' it. Well - as I had done the 4 A/C and 9 Taxol already with only 3 more Taxol to get the max. of what it could do, how could I quit so close to the 'finish line'? If I didn't finish and mets happened, how could I tell my Husband (of 34 yrs at the time) and Son (31) that I quit and did not do all I could have? They had done everything they could (Hubby - all house/cooking chores and 'house critters', Son all barn/horse chores) so all I had to be fight the Monster.

    Only you can decide what if best for you - not what anyone else has done or not done. Seek advice/input from your Dr - he/she is the one who can give you info based on your DX.

  • laralee1955
    laralee1955 Member Posts: 1
    edited August 2018

    I am on TCHP. Completed 3 cycles and also neulasta. My blood counts get lower each time and the diarrhea has never stopped. The doctor could not feel the tumor or the lymph nodes at the last visit. I am thinking that if they cannot feel it this time, I will do one more cycle and have the surgery. I am just too sick with the medicines and now the neulasta (I had neutrophils of only 2 after my first cycle) and had to take anti-biotics. I have completely lost my voice. All food and drink is nasty tasting. I am exhausted and dizzy. The bone pain was terrible for a week. My feet hurt. Hard to stay hydrated (using a straw so that I cannot taste the water or whatever). Who has quit after 4 cycles of TCHP ?

  • hapa
    hapa Member Posts: 920
    edited August 2018

    Round 4 was mentally the hardest one for me. I don't know why. I think by round 5 I was on the home stretch so it was easier and when I went in for round 6 I was so freaking happy that it was the last round that I wasn't even thinking about all the crappy side effects headed my way. Dragging myself in there for round 4 was really hard though. I seriously considered quitting but I told myself that I just had to get through THIS round and then I could decide on the next one. That helped for some reason.

  • NotVeryBrave
    NotVeryBrave Member Posts: 1,287
    edited August 2018

    I, too, almost quit TCHP. My counts were like yours after round one. Had to be hospitalized with antibiotics for three days. Then I got Neulasta with each round - but felt worse in some ways, even with taking the Claritin to help with the bone pain.

    I discussed quitting after round three. I couldn't find the lump after the first round and I was worried about possible longterm effects. My MO's NP listened patiently to my concerns and offered some possibilities but mostly it was driven by me.

    I ended up switching to Neupogen shots - not as convenient but also didn't make my counts go sky high and didn't feel as bad. I started taking Imodium on a schedule instead of waiting for the diarrhea to hit, too. And mostly I just felt a little more in control, knowing that I could quit.

    I stuck it out. I knew that I would be angry with myself if I didn't finish and the cancer came back. But that's just me. There were certainly times that I worried that I was trading a cancer diagnosis for a lifetime of problems down the road.

    You should discuss your concerns with your MO. All of the components were decreased by 25% for me after the first disasterous round, too. The dosages were determined by studies where the majority of people could tolerate the amount. That means that maybe 49% couldn't!

    Also - I kept a journal of all of my SE's and that helped to plan for better and worse days. I found that I felt fairly normal the last few days to a week before the next round. I hope you can feel better soon!


  • couragement
    couragement Member Posts: 114
    edited August 2018

    Hi all,

    I did have to quit TCHP. I made it through two rounds and had such severe neuropathy, hand foot syndrome, kidney stones, etc. etc. that we stopped infusions for 5 weeks while my primary MO spoke with MO's at several institutions and my second opinion MO at a research school agreed that I should go on Gemzar, which is usually used for metastatic BC. I was able to do 3 rounds of it so I got in a total of 5 rounds of chemo. Had to stop the last round due to low blood counts. I made it through all the Perjeta, but ended up in the hospital on the last round, and made it through 17 of the 18 Herceptin when my EJ from my last echo dropped to 50. I had all sorts of side effects on each drug, with Herceptin being one of the hardest for joint pain but I am now 2 years out, just had a PET and was all clear. Surgery showed I had an almost complete response, just a couple of micromets. I have yet to meet or hear of anyone who did Gemzar at this earlier stage. I was so grateful to have an MO who listened and worked with me to get me as much as we could given my wonky physiology. The neuropathy was our biggest worry, and indeed, now I have neuropathy in my gut from tongue to stern, which has been rough, even though Gemzar rarely causes it. It was the T and C that did the damage.

    We can only do what we can manage and live with. I am thinking of you all with much love and care.

  • buttonsmachine
    buttonsmachine Member Posts: 930
    edited August 2018

    The tough thing about Taxotere/docetaxel and neuropathy is that there is a very real risk of it worsening and becoming permanent with each cumulative dose. I had a very bad neurological reaction on my last dose - polyneuropathy that affected both motor and sensory nerves. In short, I literally couldn't walk for weeks and felt like I had constant bee stings from the knees down. Scary stuff. Neuropathy is no joke, and can have a huge impact on quality of life. Talk to your MO and see what they can do. Taxanes are pretty much off limits for me now, but I'm on Xeloda. Hope you find a good solution, please keep us posted.

  • msphil
    msphil Member Posts: 1,536
    edited August 2018

    hello sweetie u can do it you made it this far don't give up I know how rough it is I had hard time But its doable take it from me a 24 yr Survivor this yr. Praise God. Was planning our 2nd marriage when found the lumpBut thru Grace of God I made it thru.ms phil idc stage2 0\3 nodes 3mo chemo before n after Lmast got married then 7wks rads 5yrs on Tamoxifen. cytoxin 5fu adriamycin.

  • buttonsmachine
    buttonsmachine Member Posts: 930
    edited August 2018

    Couragement, I have a question - when you said you have neuropathy in your gut, what does that mean? Did you get tested for autonomic nervous system neuropathy? I just ask because I also had a really bad/unusual neuropathy from Taxotere, and I'm still not right from it. I wonder if its affected my ANS.

    Here's a little about autonomic nervous system neuropathy: https://newsnetwork.mayoclinic.org/discussion/mayo-clinic-q-and-a-autonomic-neuropathy-after-chemotherapy-is-it-permanent/

  • couragement
    couragement Member Posts: 114
    edited August 2018

    Hi Buttonsmachine,

    I am so sorry to hear that you also had a strong reaction to the Taxotere. Yes, all my docs (and I have many as I had many comorbidities prior to my breast cancer) are in agreement that it is a "variety of ANS." It is indeed quite uncommon, but it does happen. My tongue has neuropathy (tingling, numbness, mouth dryness, etc.) and my gut stops up quickly and severely if I use anything that might slow it down (ie: opiates, benzos, really almost any med). After taking one drug in particular to help with severe fatigue I had my gastrointestinal system stop working for 18 days. Nothing! The ER threatened NG tubes, etc. and as this has happened to me after every surgery I have learned to fast for a week or so and only have clear liquids until my system starts up again. It is very scary. I can use everything under the sun for constipation but the stool with just liquify in my intestine and then my intestines collapse around the stool and there is no motility or anything at all happening until my nervous system comes back on line. It is a neuromuscular response like folks with ALS or Parkinson's can get.

    Unfortunately, we knew that the T and C would probably do this, as I have had shingles 8 times in my life, as well as being struck by lightning at an early age. My nervous system took the biggest hit it could! But we still have the T and C a chance but then called it off after two infusions. My MO didn't believe me when we started but after my very first infusion she was shocked at my body's radical response to things. Most doctors have very little experience with this type of response (or lightning strikes for that matter), so if you think you have it a neurologist could be a good bet, but they often want to do nerve testing which is painful. My docs know my pain is very severe so they just called it without doing the radical testing.

    How are you doing? What do you experience?

    Sending much love and care your way!

  • ColoradoHolly
    ColoradoHolly Member Posts: 14
    edited August 2018

    Hello,

    I'm relieved in a way to see this thread and that others have considered stopping or have stopped treatment before finishing the recommended course. I have completed 2/6 cycles of neoadjuvant TCHP and am already wanting to quit. The side effects (nausea, fatigue, diarrhea, lack of appetite/taste issues, weight loss, and just generally feeling like crap) linger for me for up to 10 days after a treatment. I hate being confined to the bed or couch all day. I'm normally very athletic and this regimen has basically shut me down. I've just started experiencing neuropathy in my fingertips. I'm seriously depressed and cannot imagine doing this four more times!!!

    I've noticed major shrinkage of my tumor but it isn't completely gone. I really just want to have surgery and get this over with, I want the cancer removed from my body! I'm seriously conflicted and don't know what to do. Some days I just resign myself to the fact that my cancer is going to come back regardless (I'm young, HER2+, and already have it in my lymph nodes), so why bother completing this regimen and suffering the quality of life issues.

    I guess this post is really more venting than anything productive. I'm just not sure what to do!


    Holly



  • couragement
    couragement Member Posts: 114
    edited August 2018

    Dear Holly,

    I hear you. I am so sorry you are suffering so much with the TCHP. I also had such a hard time that I could not work, work out, or do much of anything. I basically was homebound and bedridden. I was able to do little tiny bits of movement up until my 4th round and after that it was all about just hanging on. Her2+ is something to really approach with everything you can. I have friends that were Her2+ before Herceptin and they are still with me (25= years), so the constant feeling of it returning and you might as well throw in the towel now is a very familiar mindset for us (and frankly everyone with cancer). I too was an incredibly active person, even with my life long illness' (distance ocean swimmer, surfer, kayaker, backpacker, etc.). Fortunately or unfortunately I have honest good friends with major illness' that they will not recover from and that do not have pharmaceutical options. When I complained around them they would roll their eyes and tell me "it is just a year of your life and you have a chance to beat it." When I really took to heart the time line of a year (even though it went a little longer) and saw how many people I know who have had to recover from more radical illness' or injuries I knew that I could manage a year. I just kept going to the next round of whatever (chemo, Herceptin) and told myself that I could stop after each one.

    Emotionally it was rough. Just remember that depression and crying jags are also a response to the meds, it may not be organic to your mind. When I considered that the drugs would make me cry and feel desperate I just reminded myself it was the drugs, and not who I was at my core. Use what meds they offer you for symptom management, tell them every thing you are feeling. I found my oncologist's PA would address everything, as they really wanted me to keep going. Your younger age will hold you in good stead with strength. That life force will get you through! Yes, treatment sucks something awful, but this is what we have on offer for lifesaving, and lifesaving it does. If the emotional part is the worst for you I would suggest finding a good therapist. Mine was a lifeline for me. You can do this. I used to think I was tough, but now I can truly feel my inner strength. It is amazing how resilient we are.

    Nonetheless, Vent on, I say! Do what you need to do to keep putting one foot in front of the other!

    I send you love and strength!!

  • moth
    moth Member Posts: 4,800
    edited August 2018

    Coloradoholly - I echo couragement's post. You're young, you're tough, you'll get through this. It's just a few months. Frankly, I think some people give unreasonable expectations of how 'easy' chemo can be. In some parts of the world people still get admitted to hospital for the duration of chemo, and that's how it used to be in the past here as well. We're sick - we're really sick, kwim? You're undergoing a big serious treatment, let yourself be sick for a bit. Rest when you need to, walk when you can, exercise if you can but don't worry if you can't. You'll bounce back quickly after it's over.

    Are you icing your hands & feet for your chemo? It really does help with the neuropathy so if you're not, I'd start.

    Hang in there. You started chemo because your oncologists believe it's a treatment choice that gives you the best odds for long term survival, so dig deep & keep going as long as you can.

  • BellasMomToo
    BellasMomToo Member Posts: 305
    edited August 2018

    ColoradoHolly: Yes, our QOL certainly can suck big time during TCHP. I had all the SEs you mentioned (except for neuropathy) for the same amount of time too. I wish I could say that it will get better, but it probably won't. I couldn't wait to finish. But I did.

    Talk to your MO. Perhaps she/he can adjust your dosage. Have you tried counseling?

  • urdrago71
    urdrago71 Member Posts: 559
    edited August 2018

    ColoradoHolly, vent away!

    I cried after infusions, and wanted to stop.. the tumor has shrink and I'm still going thur chemo..bcuz of this site I'm not alone and have support. So plz know ur not alone and we do understand..

    During the AC treatment I had to eat very small meals. Snacking bcuz nothing tasted good so I would have three different foods I'd take a bit and toss in fridge..never ate it the second day.. the first thing I ate was popsicles and oatmeal..then I bought plastic containers of kids snacks fruit. Metal makes for more of a metal taste in my mouth and it was hard enuff so switched to plastic container food product. still get in fresh vegs just juiced them for all the good vitiamins. Coconut water I drink a ton of it bcuz I'm not a big fan of water all the time.

    I was a low carb, protein person before this..but changed I remind myself.. eat drink, and drink..redo


    Sending you good vibes, strength and hugs...

  • WC3
    WC3 Member Posts: 1,540
    edited August 2018

    laralee1955:

    I'm also on TCHP and had to deal with bad tasting water. I discovered that in my case it was from the anti nausea medication...IV Aloxi, and to a lesser extent, Zofran, not the chemotherapy. I am going to try Emend for my next infusion. Before I figured this out though, I found Lime flavored La Croix sparkling water tasted ok to me. It's typically too bitter for me when my taste buds aren't impaired.

  • buttonsmachine
    buttonsmachine Member Posts: 930
    edited August 2018

    Hi Couragement, thanks for the info. You've been through a lot, and I hope you're doing well these days. It sounds like you are well-informed about your situation, which is great! The neuropathy aspect of chemo is very scary, and I don't think it's well understood by many in the medical community.

    I was diagnosed with "polyneuropathy" without invasive testing or seeing a neurologist, although I'd like to see one. My neuropathy was unusual in the sense that I had pain like incessant beestings in my feet, lower legs, and hands. It felt like I was stepping on glass. Also, my motor nerves were affected - I literally couldn't walk normally for weeks. Fortunately that improved, although sometimes my foot will still just stop out of nowhere. The pain and hypersensitivity in my feet and hands has also improved, but it's still there. I wonder sometimes: it obviously affected my sensory nerves and my motor nerves, and the doctors said as much. So what about more subtle things, and my ANS? My gut has been "off" too.

    Now I'm on Xeloda - which doesn't *usually* cause neuropathy, but I'm getting the hand and foot syndrome, which piled on top of the previous neuropathy is making me nervous. I don't want to have permanent damage, any more than I already do. I'm talking to my MO about it, so we'll see how it goes.

  • lulabella
    lulabella Member Posts: 53
    edited September 2018

    hi toughcookie and everyone...

    I'm also on 6 rounds of TCHP. It has been a bear! I think round 3 was a low point (I remember crying during that one) and after round four it took me a couple of weeks to recover to the point where I was considering not leaving my bed until finishing chemo. My doc lowered the T+C dosage by 20% because of the fatigue and burning in my hands and it has made a world of difference. It's been 4 days since round 5 and am feeling pretty ok. Still in bed but managed a shower and some emails. Feeling like I may actually be able to get through this! Today is "bitter tastebud day" and tomorrow "nose and face dry-out day", but I think I've made it past the worst of this round (knock on wood).

    I hope you all get some relief soon.

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