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A newbie with a question on ending chemo after 3 treatments

Sunrise19
Posts: 15
Joined: Apr 2019

 

Hello All! This is my first post.

My diagnosis was Uterine Serous Cell, Stage 1a, Grade 3, which was determined after surgery. Guess I was in denial before surgery but thought I was done since Stage 1a. I was shocked when they came back with the treatment plan of 3 brachy radiations, 6 chemo consisting of Paclitaxel & Carboplatin, Benedryl, a steroid and a pepsid type med, all in a 4-5 hour IV every 3 weeks(for 6 treatments). After reading the posts, it seems this is one of the protocol treatments used for this dignosis as well as for Ovarian cancer. 

I found that having the brachy treatment went ok although I'm not completely healed even though 2 months out, but the effects so far for me, are much less than the chemo. Yes, I am thinking of quality of life with less hearing, tinnitus, and neuropathy (mild right now) after 3 treatments. The side effects for me, were much worse after # 3 than the first or second. My white cells were low for # 3 so Neulasta was added the day after chemo. Perhaps it was that addition that kicked in these side effects. The medical team thinks that it was the cumulative effect of the chemo and separate flu like aches of Neulasta. 

And, I know that  each must make their own choice based on how they feel. So now, I've had my 3rd chemo and am having tennitus, some hearing loss(wa mild but after chemo, now moderate loss) and mild neuropathy. Trying to decide if the next 3 treatments are worth the worsening side effects. Had a hearing test yesterday and hearing doctor thinks that tinnitus (moderate now) and a low amount of hearing loss is due to chemo, but he recommends that I finish the 3 additional treatments and them and use hearing amplifiers for now, and hearing aids later. Will meet with the oncologist for questions on the day of my next chemo, next Wednesday. Wish the team doctor would discuss by phone, to give me time to weigh options.

I did ask my team what my options are and they said. 1. Continue with the probability of perhaps more or worse side effects. 2. End the carboplatin and continue with the Paclitaxel (possibly more neuropathy) or end treatment. 

So, I will speak to the doctor next week and make a decision, on the spot so I appreciate any info you can share. My best friend, and now the hospital team referred me to this site forum and wow, I'm grateful to have this group to chat with.   Each day is a new one and I'm glad to see each sunrise!

Tamlen's picture
Tamlen
Posts: 192
Joined: Jan 2018

Sorry you're going through this but I'm glad you've found this group -- the ladies here are pretty awesome and have been so helpful to me over my journey of the last year.

I had the typical six cycles of carbo and taxol. Each cycle, it was harder on me -- the fatigue, the bone pain, the difficulty breathing as my hemoglobin dive-bombed. This is fairly common -- they say "chemo is cumulative" for a reason. Its effects, both the good cancer-fighting effects and the wear and tear on the body, accummulate the more you get.

I don't have uterine serous, so I can't comment on whether or not it's a good idea to stop mid-way. I'm Stage 4B with a less aggressive type, so even though I was pretty sick by the end (blood transfusions, etc), I never considered stopping.

I finished chemo in September. I also have hearing loss that didn't improve afterward and my vision was affected (better than 20/20 before, now require reading glasses or everything's a blur). Those seem to be the two lasting effects for me; everything else resolved as I got further out from chemo.

I was fortunate not to have any neuropathy because I found good advice here on the forum about icing hands and feet during the infusion. I went all out on this because I'm really active and was terrified of losing the feeling in my fingers and toes. I bought ice mittens, ice socks, and a portable, plug-in freezer, and my husband traded out frozen replacements for me all day while I was at the infusion center -- every 45 minutes or so. It was a lot of work and not cheap, but I've had no neuropathy at all, so it was completely worth it to us.

Keep us posted about what you decide to do and how things are going.

Sunrise19
Posts: 15
Joined: Apr 2019

Thanks Tamlen. Yes, Im leaning more toward trying to finish it out because of the serous cell, which gets the same treatment as ovarisn, for its agressiveness. Glad you were able to work it out so that you can continue being very active. I wish each treatment center would do the freeze therapy from the start, if wanted, just as a preventative. The neuropathy came on after the very first rtreatment for me, so they offered and I did it for the next two treatments. I think it prevented it from getting worse but still have some. I've been walking each time for weeks 2 and three, until it's back for the next round, then down a week.

I will post again soon. 

 

MAbound
Posts: 768
Joined: Jun 2016

Some of us started on Taxol, had problems with neuropathy and got switched to Taxotere for subsequent infusions and seemed to tolerate it better than Taxol. It's in the same family of drugs as Taxol, so it's as effective. I'm surprised that wasn't included as an option for you. You'd still need to ice your hands and feet with it.

zsazsa1
Posts: 254
Joined: Oct 2018

Sunrise, it was my experience with the carbo/taxol that each round was different.  Some I was very sick, some not.  I iced my hands and feet to reduce the chance of neuropathy, and wound up declining the Taxol the last round because I was beginning to have neuropathy in one of my feet.

If I were you, I'd try to finish the chemo.  Serous is such an aggressive metastasizer, and you have a chance of a cure if you were Ia.

EZLiving66's picture
EZLiving66
Posts: 1299
Joined: Oct 2015

I don't comment too much about my chemo because I don't want to scare anybody away from it but I'll share my experience with you since you asked.

I have UPSC, Stage II and had Taxotere and Carboplatin (Taxotere was supposed to cause less neuropathy). After my first chemo I started to have pain and tingling in my feet and fingers along with vision problems in addition to constant nausea.

After my second one, I was given Neulasta. I felt like my pelvis was vibrating in pain. They gave me oxycodone but it barely touched the pain. The pain in my feet and hands got worse and it was hard to walk. My blood sugar and blood pressure skyrocketed. I was dizzy and started having night terrors. I had to use a wheelchair when I went to the hospital for my blood work before the third one because I could only walk a few steps. I started having diarrhea and more nausea.

The day of my third chemo my blood pressure was 220/180. I thought they would postpone it but they didn't. By then my stomach acid was eating my esophagus and I was hospitalized with esophageal erosion. The night terrors were so bad I was afraid to sleep. I was pooping white. I called my GP for help. My port had never healed and was so infected, puss was running out of it. It could only be used the day after it was installed and finally, my oncologist took it out. My fingernails and toenails started to fall off. I could no longer control my bladder and bowels and had to crawl to the bathroom on my hands and knees since I couldn't walk. I would wake up in the middle of the night and just gag and gag until I felt like my ribs were broken. My skin started to peel off too.

On Christmas Eve, I was talking to our youngest daughter and I started seeing "fireworks" out of my left eye. I looked at a newspaper and the words were moving around and jumping off the page. If I turned my head to the left the room would just spin. I called my GP the day after Christmas and she said to come in right away. She ran all kinds of tests and I sat there all day in the wheelchair and waited for the results. She said first, my liver was failing - that's what was causing the night terrors, the white poop and the blood sugar over 700. Next, she thought I had a small hemorrhage stroke on the right side of my brain and ordered an MRI to confirm it since I was having weakness on my left side, trouble seeing and balance problems. She carefully read through the results of my biopsy after my hysterectomy and asked me if she had this right - this chemo was not curative, but preventative? She said in the oncologist's notes he thought he removed all the cancer. I confirmed that. She said it was the oncologist's job to kill the cancer; it was her job to make sure he didn't kill ME. We stopped the chemo which was to have been my fourth round the next day. I went from taking one pill most of my life - synthroid for my thyroid - to 18 pills a day and I still take 13 different kinds.

I still had to go back to my oncologist because my port site would not heal. He told me he was one of the doctors running a clinical trial using Metformin. He said he could get me in it but I may or may not get it since half were getting a placebo. He said my GP would probably prescribe it for me since my blood glucose had been out of control during chemo (I had a T2 diagnosis for ten years but a normal A1c). She gladly did and since then I take 2000 mg of Metformin a day. There have been times my A1c has dropped to below 5.5 but I just eat candy - LOL! I finally ended up going to a wound care specialist and after six weeks, she chemically cauterized the wound and it finally healed but it's left a lot of scar tissue there.

I asked my oncologist about radiation but he said no, he was saving that if I had a recurrence. So, here I am, over 3 1/2 years later with No Evidence of Disease (NED). I STILL have neuropathy in my feet and sometimes it's really bad. I also have neuropathy in my left eye and the left side of my tongue although those may be stroke related. Two of my fingers are still number - my index finger and thumb on my right hand. I have constant diarrhea, my fingernails and toenails never grew back the way they should, my left eyebrow is missing, I have bald spots in the back of my head, numbers "move" (I have an accounting degree so could no longer do our business' books) and jump around but thank heavens, I can read and write again. My speech is sometimes slow and the wrong words come out but maybe that's just getting old - I'm 66. I have vision problems and my prescription sometimes changes daily. 

I went through extensive physical and occupational therapy which really helped. I'm alive and I have a wonderful life. We retired, moved to Florida and the more I do like playing cards and puzzles, my brain has gotten better. I get tired quickly but then I rest. I don't sleep very good because of the neuropathy pain but then I sleep later in the morning. My husband drives me where I need to go. 

I believe that the fourth chemo would have caused irreversible liver damage and maybe my death so I'm glad I quit. BUT....that doesn't mean you should. I am glad I had a GP that I could talk to and that I trusted to look out for MY best interest.

Good luck!

Love,

Eldri

janaes
Posts: 715
Joined: May 2016

Yea i did what MAbound wrote about. My neropathy from taxol after my 3rd treatment was to the ball of my foot on my left foot. When i told my doctor that he did offer taxotere. Im glad i switched because my neropathy did not get worse. Im sure it would have had i not changed. Almost 3 years out from my hysterectomy i still have the nerpathy to the ball of my foot. Taxotere did make me more nausious during treatment but it was worth it for no neropathy. I didnt do the icing but it sounds like its working for you and as others have said it worked for them too.

Good luck as you go forward. 

BluebirdOne's picture
BluebirdOne
Posts: 145
Joined: Jul 2018

My team prescribed only four out of the normal six chemo. I had paclitaxel and carboplatin. The neuropathy started after the 1st treatment, plus pretty bad nausea, so they reduced the next three infusions to 80%, I had three bracky sandwiched in between. My neuropathy to my hands is totally gone, and after 5 months the stings to my feet are also subsiding. Totally doable, unless they get worse. Still, compared to most, I had an easy time with chemo and brachy was a breeze except for a few days of diarrhea. I was dx with 1a UPSC with LVSI, July, 2018, they wanted to hold off the external radiation in case of a recurrence. I would ask the doctors and then you can make a more informed decision. As you can see, there are many approaches to UPSC depending upon how one tolerates the treatments and the doctor's approach. The range of treatments detailed here with the women who were dx with 1a UPSC is pretty stunning. Some get no chemo and radiation, while others get the full chemo, and both external and internal radiation. For me, I am able to trust my team, and have peace of mind that they know what they are doing. But that doesn't mean I don't have questions or want deeper explanations. Good luck to you and welcome! 

Sunrise19
Posts: 15
Joined: Apr 2019

The further I get from last treatment I get, the better I feel. Yes, up again for sunrise. Bluebird, Seems that the common effects were doable for me too, but the less common have come up since #3. Yes, a wide range of treatments leading to a wide range of effects and a wide range of results. Just yeterday I learned that much of the funding is put into ovarian cancer and so is the research, meaning less stats for UPSC. And I did see another post on this forum from the past, where, to get into a trial, NY I believe, the diagnosis name was changed to Ovarian in order to get into the trial only for those with very "high risk". 

Well, I started this journey with surgery on Dec 24th. Just prior, while still dazed with the diagnosis, a doctor on the surgical team, who has since moved up to another dept, was the only one to give me any #'s. He cautioned me about numbers and infor by Dr Google and said, You are not a statistic and each case is very different but from the studies that have been have compiled: 

Total Hyst/BSO/lymph node sampling-test,and washing helps by about 50%, radiation may add another approx 25% and 6 full chemo treatments another approx 15%. The 10 % rate left is on the table so every 3 months checkup, for 2 years, then every 6 months until 5 years. So, that got me to start this journey even though I had no pain or other symptons besides light bleeding. And actually, I was in such denial that I thought the surgery would prove no cancer. So now, the shock, denial and reality has become all too real. 

Has anyone found, or heard from their medical team, other stats? 

Thank you All for sharing your experiences, as you know, this is a support group like no other.  Off to peek at sunrise for this day, the Present!

MAbound
Posts: 768
Joined: Jun 2016

We all seem to have a strong need to know them in the beginning, but learn as time goes on that they just don't mean that much to us as individuals. Your doctor was so on point with what he said to you and many of us say the same thing here.

Stats are generalities. Numbers can be manipulated to say anything anyone wants them to. Ignore them.

You are you're own statistic, so don't look to them for hope or for reason to worry. Each of us bring so many variables to the table with us when we are diagnosed and studies that gather statistics just can't begin to account for them. They are just generalities and are often outdated and not of much use. 

Sunrise19
Posts: 15
Joined: Apr 2019

You are right, and have said it so well. Will hear out the Dr. recommendation, and send an update. Thanks!

Ribbons
Posts: 45
Joined: Jan 2019

I was diagnosed with clear cell. Had the hysterectomy with all the other things all taken out on Oct 2/18. I was 1A with clear cell and some serous, slight LVSI. 22 lymph nodes taken out and all clear. I had 6 rounds of Carbo/taxol followed by 3 brachytherapy. I am not doing external radiation. I am 66 and until this I was in good health with none of the things that increase chances for this cancer. It was not easy getting through the chemo, I was out of commission for about 4 days each time, had Neulasta. I went to a good place and they offered me ice packs for hands and feet, 3 toes are slightly numb but not bad. I have had bad aching legs but I have fibromyalgia and I think that doesn’t help! I have a bad ankle that I think needs surgery but I have been waiting to recover from all the chemo etc before I go through that! Honestly, my ankle has caused me more pain than any of the cancer related things.

Sunrise19
Posts: 15
Joined: Apr 2019

Glad you got through it with all 6 chemo treatments and not too many side effects, even with Neulasta. And it didn't feel cumulatively worse with each session? Yes, i've heard ankle problems are painful and the surgery takes a long time to heal. Hope you recover fast to have the ankle surgery.

Thanks for the support!

BluebirdOne's picture
BluebirdOne
Posts: 145
Joined: Jul 2018

Did not get worse cumulatively, except for fatigue. Which is not to say they were easy. The bone pain was excruciating but subsided as the days went on. Worse was getting the 64 oz of water everyday for months during treatment. Also eating food was so hard  because of nausea and everything tasting so metallic. My first two months or so were so filled with anxiety, despair, sense of loss and depression that I was barely functioning , so so so emotional that I cried, sobbed even especially with certain people. That has all passed and I view it as part of a normal process for me of coming to terms with treatment and now survival. So take heart, these feelings are normal and I believe, healthy. 

Denise

Sunrise19
Posts: 15
Joined: Apr 2019

Your words are an inspiration to me, and those recently into this journey. Yes, it has become clear that the level of side effect and pain tolerance is a range, as is, as you said, the reaction to this disease and its effects. Reminds me of the 'stages of development for children" as they become ore and more aware and physically and mentally change. And sometimes there's a detour. Of course development doesn't stop with childhood. This wake up call brings us into the range quick physical and mental stages ... Appreciate your words.

Went for a walk with nature yesterday, very soothing. Now will watch for sunrise and another day, the present.

BluebirdOne's picture
BluebirdOne
Posts: 145
Joined: Jul 2018

that this disease creates is not as often addressed as the physical. It is much harder to talk about than the physical aspects. I am glad that we are hearing about the entire struggle that we have, not just the physical. And for me, I found that the more knowledge I get about treatments, side effects, etc., plus the support and personal stories here, helped me to move beyond the first stage of coming to terms with my new life. So much inspiration to be found here!  And hope for the future. 

Denise 

NoTimeForCancer's picture
NoTimeForCancer
Posts: 2519
Joined: Mar 2013

Sunrise, I was very fortunate not to have the side effects the other ladies have written about.  I just wanted to lend my support and let you know how you have a wonderful group.  As you can see, you are not alone. 

Sunrise19
Posts: 15
Joined: Apr 2019

Yes, you are fortunate and I am too, that is, not to have worse,  This group IS Wonderful and with such a range of experiences, leading to knowledge to share. Truly a Supportive forum.

Soup52's picture
Soup52
Posts: 883
Joined: Jan 2016

Sunrise, I know the decisions are difficult. I managed to get through all of the treatments with mostly the neuropathy in my feet only and chronic constipation which could have been caused by adhesions from numerous abdominal surgeries, radiation, chemo, or the fact that I’m getting older 66. After all I’m living a good life after diagnosed grade 3 clearcell and stage 3C with no reoccurance so far since 2016 summer end of treatments. I think as you can see the reactions to treatment vary greatly, so It will be up to you and your drs. I wish there were easy answers for you. Hoping for positive outcome for you.

Sunrise19
Posts: 15
Joined: Apr 2019

Soup52,

Oh yes, do live the good life after the wake up call! So good that you are clear since 2016 summer. Yes, no easy answers so will see what the Team recommends and then decide. Thank you for your supportive words.

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