I Feel Like I Failed Chemo

Amatullah

My first chemo after surgery was carbo and taxotere.  I had some spread to lymph nodes, but only in the pelvic region.  The taxotere was a half dose because I have such bad perpherial neuropathy already from the antibiotic levoquin.  I did okay, so they upped the dose to 3/4's on the taxotere and I did horrible.  Lympodema in feet and legs and much worse on the neuropathy.  Plus I felt so sick, lots of throwing up and at nearly a weak, I got dehydrated and the diahrrea got away from me and I was too sick to care.  I'm alone and I finally called 911 and with rehydration I felt so much better, but never felt recovered enough by the next chemo to dive in and repeat the same thing.  The dr. lowered the taxotere and upped the anti-nausea and I'm doing okay this time.  Tired, very shakey but manageable.

My daughter is upset with me for getting the dr. to lower my dose.  Her husband was at the Dr.s's appointment with me and I think he feels like I talked the Dr. into less taxotere.   I feel like I explained my problems and my reservations, but did not ask him to lower it.  He suggested it and I admit I was relieved.  He said the real ammo for the carcinosarcoma is the radiation and the chemo was more for the stray lymph nodes.  I start radiation in 3 weeks and then after a month of weekdays and 3 bracy, go back to 3 more chemo.  My daughter told me other people manage the side affects and I should be able to.  I went into this treatment with almost more fear about making my peripheral neuropathy worse than surviving the cancer.  I take 3 to 8 Percocet a day at times for the nerve pain and stilll wake up crying at times, if I sleep more than 4 to 5 hours without meds, so I've really had to balance quantity and quality of life.  What she said really hurt, but I sucked it up.  I know she's frightened.  My son won't talk to me about cancer and it's almost like she's mad at me for "not trying hard enough."  

Has anyone altered or cut back on protocol/treatment.  I've indicated willingness to extent number of chemo's if that would help, etc.  If the Dr. would have been more insistent, I probably would have reconsisdered, but he talked like this wasn't such a big deal and I was so relieved.  So I feel deflated and kind of like I'm failing...........and hurt.  I think I have not been honest with how bad my lupus and neuropathy and fibro and now the cancer really are.  People are always telling me I look good and sounding surprised like I should look pale and sickly or worse.  I have kind of a pink ruddy complection, so I don't look as puny as I sometimes feel and I don't complain usually.  Maybe I shouldn't tell people I'm good when I'm not over the last 10 years with the lupus and fibro and neuropathy and other stuff.  I act healthier than I am and then feel hurt when they don't seem to feel a little sympathy for how lousey or exhausted I am?  I don't know if I should speak up and tell my daughter how hurt her comparison to others on chemo are or will it just make me feel more of a failure.  A fight with a child really has no winners.  I quess I just needed to vent here.  Sorry this is so long.  I'm glad to have a place go whine a little.  Thanks all.

Soup52

Please vent away! It sounds

Please vent away! It sounds as if you have been through a lot with your other health problems included. Unless a person has been through chemo and suffered the side effects, they just have no idea what it is like. When I try to explain neuropathy, I can tell people just don't get it and mine isn't really bad compared to other people's. I think you do need to talk to your daughter about this. It isn't uncommon for doctors to lower the chemo dose because of neuropathy and other complications. Maybe it would be helpful for her to go to the next appointment with you. Are there any support groups in your area? If there is one, you might find it helpful to attend. Reguardless, we will all be here for you! I'm sure others will chime in shortly. Prayers for you!

TeddyandBears_Mom

Amatullah,

Amatullah,

I'm glad you posted.  This is the best place to vent since we all have an understanding to some degree of what you are going through. As Soup said, people can't understand this unless they have lived it. I suspect your daughter is frightened and just doesn't know how to deal with it. I think your doctor would have explained the risks of cutting back if he was concerned about it.  I like the idea of your daughter going with you next time.

Please remember to drink a lot of water and take the drugs for your stomach issues. You don't need to suffer through this. I'm sorry you had such a rough time....

Be kind to yourself and know that your are doing the best that you can to beat this ugly cancer. This isn't an easy journey but you will get through it.

Love and Hugs,

Cindi

Lou Ann M

So sorry

Chemo is hard enough, without having to deal with a disgrunltled child.  Everone's body handles chemo a little differently, so you should not feel bad about how you are doing.  It sounds like you already had other health issues to deal with to make is journey even harder.  I had to have my chemo, Taxol and Carbo lowered several times because of nueropathy, and what was even harder on me, several times I had to have chemo postponed because of low blood counts.  I felt like a naughty school girl being sent home from school..  I have had many different side effects from different chemo and I don't think it makes me a weaker person.  I think these trials make us stronger.  Children can be a challenge to deal.  Love her unconditionally and forgive her for what she has said.  It will be better for you. She loves you and may not do how to deal with her mom having cancer.  Fear makes people say and do things they may not mean.  In the meantime come here to vent all you want, we are here to listen.

Hugs and prayers, Lou Ann

 

MAbound

Wow!

Oncologist's and chemo nurses have a lot of tricks in their bags for getting us through chemo. Lengthening infusion times, adjusting dosage, and changing the drugs used are just some of them. They anticipate the need to do these things because we are all individuals and don't necessarily all react to treatment the same way. You brought some pretty serious pre-existing issues with you to treatment and the need for some adjustment isn't really unexpected under the circumstances, so no way are you a failure for needing them.

For anyone to make you feel like a failure because you needed your treatment adjusted is way out of line and not true at all. If anyone is a failure here it is them because they are not being helpful at all. I just can't get over that they think it's ok to tear you down this way and I feel quite outraged about it on your behalf. By their measure, I'm a failure too because I couldn't handle Taxol after my first infusion and had to be switched to taxotere. What nonsense! They don't know what they are talking about! 

If your family has any desire to be helpful and supportive of you during treatment, tell them that bullying you (and that's what they're doing) to get you through this is the opposite of helping. Support is not critiscizing what you can't do. It's taking care of you doing the things you can't do yourself while this treatment leaves you so crazy weak and in pain. 

Chemo and radiation are not easy and it's not quick. It's as wearing on our families as it is on us and we need to forgive ourselves and them when it gets to us periodically, but it doesn't mean that you have to be a doormat either. By all means, tell them that they hurt you. If that's too hard for you, show them this post. They need to wake up to the harm they are doing because you still have a ways to go. 

Good luck to you and feel free to keep us updated on how it's going regularly. You are not alone here!

 

MAbound

Neuropathy

If I recall correctly, you have hypothermia slippers. Have you tried using them for pain relief from your neuropathy? I used to put them on over socks when I went to bed at night and it was the only way I could fall asleep without resorting to drugs. I was trying to avoid them because they aggravated the heart burn I had to deal with. I worry about you taking Percocet so regularly because it can become an addiction and can aggravate constipation issues from the chemo, too. There are alternative drug options for treating neuropathy such as anti-depressants and anti-convulsants that you may want to discuss with your oncologist. 

Kvdyson

It is not fair of anyone to

It is not fair of anyone to criticize how someone else's body reacts to a treatment for a disease. If a treatment doesn't work for someone, it's the treatment that failed, not the patient.

It sounds like you are (correctly) relying on your medical team to treat this disease. That is about as much control as any of us have when we are diagnosed with cancer. Medical teams follow standards that are set for each type of cancer. If one option within the standard doesn't work, they will try another. It's a process and it takes time and effort for it to work. This is a marathon, not a sprint.

Your loved ones seem concerned about how this disease is affecting them and their lives. Maybe it's time to sit them down and help them understand that, although you love them, this is your life and you will do whatever it is that you think is best for it. Hopefully they are mature enough to respect that and support you with whatever you decide.

janaes

Hi, welcome.  I had toxatere

Hi, welcome.  I had toxatere also.  for three rounds of chemo.  It was a full dose.  Im not sure how much that is but had it with carbo.  Those were my last three treements and I will tell you I felt sick.  My first three I was taking toxal and did not feel nears as sick as I did with the toxatere.  I was in bed alot more and I couldnt eat or drink as good as my first three treatment.  I livedon carnation instant breakfasts and watermelon for about 4 or five days after treatment.  I remember it was tough and the onl;y thing that got me through was knowing that my neropathy wasnt getting werse and the sickness would eventually go away after treatment.

 

I think you need to be kind to yourself.  You do what you feel is right for you.  

Love, Janae

CheeseQueen57

Only you know what you can tolerate

I'm sorry you are suffering but no one else can know what you are going through. In fact there are many of us that were not able to even complete our chemo regime. I had a stroke after 14 out of 18 planned chemo treatments and with the advice of my oncologist, stopped. We're hoping that was enough. Do what your doctor advises. The damned chemo alone can kill you. It has to be moderated to each individual. Hang in there. We're all with you in spirit!

Amatullah

Thanks!

Thank you for your support.  LouAnn, I know fear is driving my daughter.  We couldn't talk about it at all to start with.  I think I like it better that way, lol.  I'm glad someone else felt like they were a naughty school girl.  I have a thing for instant breakfast and watermelon the first 2 treatments.  The instant breakfast still, but the last couple of watermelon were not that great, so it cured me.  Cheese Queen, my Lupus and an antibody I have make me 35% more likely to have a stroke.  So I know it's not always a matter of just toughing things out.  I don't think it helps to talk to her though.  It will just hurt her and when she hurts, it hurts me.  That's okay.  I think we need to stop trying to get what we need from those who don't have it and just accept that it's hard on them.  I've pretty much decided I'll get my advice on chemo medicines from the drs. and on how to make things less miserable from those who have experienced it.  You're right Kvdyson, it is a marathon and although I'm not quite at peace with that, it's coming.  

MaBound.......I have tried dozens of meds for the neuropathy, including several anti-depressants, which caused me to react with uncontrollable jerks.  I apparently get seratonin syndrome.  Lyrica screwed up my cognitive thought processes.  Several others did absolutely nothing and so on.  The Percocet doesn't cause me too much problem, but I can't take it during the day, if I need to drive or babysit.  Sometimes I pick up my granddaughters, so I take a non-narcotic during the day.  I only get pain meds from my primary and I am careful.  I don't have a lot of luck with meds which makes chemo scarier.  I even tried edible pot and it just made me feel kind of stupid and not in a relaxed sort of way.  My thermo socks are good for a short time.  They don't stay cold long enough, but they are a short relief.  I used to be really healthy in the good old days, lol.  Anyway, thanks all of you again.  Your words made me cry, but I felt better.  I've spent an awful lot of energy trying not to cry.  I think trying to be tough is probably over-rated.  Bless you all.

CheeseQueen57

Occasional Pity Party-OK

We all endorse occasional pity parties but as long as you can find your big girl panties and move on from them (sometimes with the help of medication!).  Because of your increased stroke risk, has your doctor talked about adding a baby aspirin or other anticoagulant therapy?  Just having cancer also makes you more clotty. 

MAbound

It's a shame you can't talk

It's a shame you can't talk with your daughter, but getting shut down by family who can't handle talking about the reality we're coping with is not all that uncommon for a lot of us. They'd rather pretend it's not our new reality and that's ok for them but not very helpful for us. We all have to cope in our own way which is why having this board to come to as a safe and understanding place to vent is so helpful.

You bring such complicated medical issues with you to treatment that I wish we could do better with helping you with the neuropathy. The unrelenting nature of the pain is what makes it so hard to endure. I also got B12 shots during chemo besides taking oral supplements and that helped the pain gradually abate to where I can sleep now without it keeping me awake. It's a very slow solution taking a couple of months to be noticeable, but it might be something else to talk to your doctor about trying. I don't know what impact your having prior neuropathy and lupus would have, though.

CheeseQueen57

Acupuncture

i can't remember if you've already tried this.  I believe it minimized my neuropathy during chemo and there's some credible evidence that it can help with already established neuropathy. 

Double Whammy

I had Taxotere as part of my chemo for breast cancer.  I had to have a reduced dose the last treatment because of some skin toxicity.  My oncologist (breast not gyn) told me they drug can be reduced up to 20% with the same efficacy.   I think they put you on as much as possible to see if you can tolerate it, but it CAN be reduced.  That being said, my experience post Taxotere is that Taxol is just as effective, just not as convenient for the infusion center.  Taxotere can be administered every 3 weeks, Taxol needs to be administered weekly but in smaller doses.   This is NOT medical advice - but you might consider discussing this with your gyn oncologist. 

Suzanne

EZLiving66

I had Taxotere and

I had Taxotere and Carboplatin and I almost died. My GP said it was the oncologist's job to kill the cancer but it was her job to keep him from killing me. You don't have to defend your decision to anyone. You and you alone know your own body and what it can take. Chemo can kill! People forget that is one of its side effects. I stopped chemo after three infusions. I truly believe a fourth would have killed me. My last chemo was almost 20 months ago and I still feel those side effects every day.  We are all different and many people cannot tolerate chemotherapy. Best of luck to you!!! 

Love, 

Eldri 

CheeseQueen57

EZLiving66 said:

I had Taxotere and

I had Taxotere and Carboplatin and I almost died. My GP said it was the oncologist's job to kill the cancer but it was her job to keep him from killing me. You don't have to defend your decision to anyone. You and you alone know your own body and what it can take. Chemo can kill! People forget that is one of its side effects. I stopped chemo after three infusions. I truly believe a fourth would have killed me. My last chemo was almost 20 months ago and I still feel those side effects every day.  We are all different and many people cannot tolerate chemotherapy. Best of luck to you!!! 

Love, 

Eldri 

Good to see you Eldri

i miss your sense of humor. I still chuckle about that wig at work story. Hope you're doing well.