I am in Day 12 of my fifth infusion on Docetaxel. Chemo Crash is over for this session and my "Fog" is starting to go away.
Since my first infusion, I have had very mild neuropathy in my feet - even though I wear ice sox and mittens during the infusions. The neuropathy has been very tolerable and it comes and goes. This session, after the dexamethasone wore off, my foot neuropathy has become much more intense and painful. I have read the horror stories online about Docetaxel foot neuropathy, that once the nerves are stimulated, that the neuropathy could be a lasting side effect even after the Docetaxel is stopped.
Have any of you had this happen and is there anything that can be done, short of stopping the Docetaxel, to help with the foot pain - creams, vitamins, etc??? The Docetaxel has really knocked down my psa from 15.5 to .6 so would skipping the last infusion be a solution??
Hi Tom. The fifth infusion is when I was really impacted by the side effects. It's when my taste buds started to be affected. I had mild neuropathy in my toes, starting with the smallest ones. By the fifth infusion it had spread to all of them. I didn't wear ice socks. Once I finished the sixth infusion, the side effects started to go away quickly. Within a few weeks the neuropathy went away in my toes with the exception of the two smallest on each foot. There it took about three or four months to fully disappear.
It's great to hear that you have had success with chemo. Best of with the next few weeks.
One more question Mark. It seems like in my four previous infusions that by day 12 13 or 14 I started to get my strength back and can walk a mile or so. This time I'm forcing myself to try to walk and at least go out to the golf course and put for a while but I am just totally fatigued within 15 or 20 minutes and barely can walk back to the car. Did you experience this type of fatigue toward the end of your treatments and how long did it take for your energy to come back. I love to exerciseThank you Tom
Yes. I experienced the same. The first four infusions were relatively easy. The fifth and sixth were much more difficult. Don't worry. Just rest when you need to and don'tplan on doing a lot. The extra fatigue and side effects will go away a few weeks after your sixth. Like you, I had a good response to my chemo. My PSA went from 103 down to 1 or 2 and continued to decline after chemo. I reached my nadir of 0.17 about 6 months after chemo finished. Scans I had done about 2 months after chemo showed a dramatic reduction in the size of my mets. Good luck.
That is such good news about your psa. How long has it been since you finished chemo? Are you taking anything other than Lupron now?Sorry for all the questions but your journey is very similar to mine.
Diagnosed July 2018. Chemo from Aug to Sept 2018. Started on Firmagon at diagnosis. Switched to Zoladex (similar to Lupron) after 4 months. Been on that since. PSA stayed below 0.7 for a long time. It jumped up to 1.0 in January 2021. Oncologist added bicalutamide and PSA dropped again. Last month it was 0.13 ... lowest point ever. Scans last month showed that bone mets were no longer visible. I see my oncologist in two weeks to map out where we go from here.
Cabazitaxel (Jevtana) has a much lower incidence of neuropathy, but is as effective as Docetaxel. It is sometimes prescribed because of neuropathy with Docetaxel. Something to discuss with your doctor.
There is something on this site recently about Carnitine being a Very Bad Thing.... It was a dietary post I think about dairy, eggs, and Carnitine was mentioned.... Delve around for it. I have a couple of kg of acetyl L Carnitine now redundant.
I’ve done chemo twice. In 20016, I had cisplatin and etopocide and that Worked for awhile. Then I. 2019 I had docetaxel and that didn’t work for me. The docetaxel gave me neuropathy in my feet and probably 8-10 sessions of acupuncture fixed most of it. I had to stop due to COVID19, so my feet are not 100%, but pretty close. Stay strong
Please don’t stop the Docetaxel, you’re almost there. You got this 💪
When I first did mine in 2018, I had similar issues but with family, and HU brothers and caregivers support, I continued on. Yes side effects will be there but look at the bright side, your PSA numbers are down 👍
I did a lot of walking around the house during tough days and around the neighborhood when I felt stronger. This helped with neuropathy and I wore socks most of the time. As for the fingers, I did wrist exercises and finger exercises a few times in a day. All were recommended by oncologist and urologist.
I was not allowed to take supplements other than those prescribed by the good doctors. To mitigate pain I took Aleve and sometimes paracetamol.
If you continue docetaxel again the neuropathy is more likely to become permanent. Better to switch to cabazitaxel if more chemo is needed.The following interview includes an explanation. I’m going to post on the very good chemo tips it contains.
There’s no way to predict who might suffer from that or not?
Dr. Dorff: It’s not a complete no. We know patients who already have some preexisting neuropathy, whose nerves are already damaged, are more susceptible, for instance patients with diabetic nerve damage. That’s one reason we might try to get them Jevtana (cabazitaxel) instead of Taxotere (docetaxel) because Jevtana (cabazitaxel) doesn’t impact the nerves in the same way. I’m not sure if that’s what patients worry about, but that’s one of my number one concerns because I’ve seen patients a few years after chemo who are still vexed by the neuropathy.
If Jevtana (cabazitaxel) doesn’t result in neuropathy, why wouldn’t you use that agent over Taxotere (docetaxel)?
Dr. Dorff: Because insurance typically won’t cover it. Head-to-head, they were compared in the FIRSTANA trial, and they were equally effective; one wasn’t much better than the other. So, insurance companies can say that Jevtana (cabazitaxel) is not more effective; it’s equally effective. Taxotere (docetaxel) is a fraction of the price because it’s off-patent, and Jevtana (cabazitaxel) is actually approved specifically in post-Taxotere (docetaxel) patients, so it’s off-label to use it first-line. You can make a case when you have a guy with neuropathy, but even if you have a guy without neuropathy, you sure would like to leave him without neuropathy at the end of his treatment.
We start to see the neuropathy around dose five. If you stop, it’s more reversible, but if you keep going, that’s where it can become permanent, and so again, when we’re getting to how we can enhance the efficacy, if we could get more doses in without being limited by neuropathy, maybe we would do better with the drug, or maybe we just avoid the neuropathy, have equal efficacy and patients suffer less. There’s two ways we can win.
Yes, that is exactly what this is saying. Cabazitaxel does not have the same propensity for serious neuropathy. And if you stop docetaxel and switch, rather than continue once it starts, typically at the 5th cycle, then it is more likely to resolve rather than become permanent.
I had taxotere chemo infusions over 3 years ago shortly after diagnosis, and didn't know anything about using ice to help prevent foot neuropathy and other SE. My feet were never painful, and the neuropathy for me was a certain crunchy feeling when I walked, like walking on eggshells. The infusion nurses told me that it might take a year to go away, but although it has faded considerably, it has never disappeared. Hair grew back nicely, etc., but the feet remain slightly affected. It doesn't diminish my QOL.
I had chemo - six rounds of Docetaxel per CHAARTED back in the fall of 2015, I still have neuropathy in my feet and numbness in my finger tips. The neuropathy in my feet usually kicks in during walking and hiking. It is tolerable and I wear a good shoe/sneaker with plenty of cushion which seems to help. My MO said it’ll likely never go away but it seems to have gotten a little better over time, or maybe I’m just used to it LOL.
Hi tceinvestmentsI finished 6 rounds of Zoladex in October 2019. Initially, I had quite bad neuropathy in both feet. This was the intermittent feeling like an electric shock, or having my foot squeezed in a vice. This started to diminish and after 6-9 months, was entirely gone. I am now left with numbness in both feet and have around 70% feeling. Because I can't always feel the ground when I walk, my balance is affected as well. My Onco told me it is now probably permanent and there is nothing he can give me for it. Nobody mentioned using cold treatment to hands and feet to reduce the chance of neuropathy. Not sure if age has anything to do with it, but I am 75.
Finished my 6th Docetaxel on May 12th. Finger tips on my dominant left hand still numb but not right hand. No problem with feet......dried , peeling skin on hands.Tennis is VERY slow for me now but I still play. Walking is very doable but the fatigue is really bad most of the time.
C-11 Choline scans at Mayo on June 10 will tell the greater story but PSA has dropped 6 times in a row with 60meg/m2 Docetaxel dosage for the last 4 infusions.
Congratulations Leader on finishing your Docetaxel.. I have my last - 6th Session - next week. What was your psa before you started and what is it now.Thanks for sharing.
I started in January 2021 after personally requesting it. 6 confirmed bone Mets plus 6 more “suspicious”CAT and bone scan results on December 17, 2020 led me to ask for chemo. My MO said I was the first patient he ever heard of requesting chemo.......it was time. My PSA had gone up from 1.17 July 31, 2020 to 22. by December. 3 weeks ago on May 11, PSA was 3.5 with 5 straight drops. Tomorrow, my last PSA test because my 6th shot was 3 weeks ago. Onto Mayo Clinic for C-11 Choline and other scans with Dr. Kwon. Switched to daily Orgovyxx from monthly Firmagon shots in February and added Zometa for bones in April.
Orgovyxx is a new FDA approved daily tablet that replaces Lupron, Firmagon, and other monthly shot meds........lowers testosterone with many benefits over the older meds.
Are you getting that from Dr. Kwon at Phoenix Mayo???? I go to Dr. Bryce at Phoenix Mayo. Very curious because I have my 6 month Eligard shot tomorrow.
Dr. Eugene Kwon is at Rochester, MN. Is one of my docs. Anybody can get the Orgovyxx tablets for FREE for 60 days.......look into it on Google. Co-pay after 60 days is $10. a month.
Yes I looked up Dr. Kwon after I messaged you. I looked up the Orgovyxx tablets for FREE for 60 days. However, it said it was $2,500 a month with insurance. I have great Plan D insurance - how do you get it for $10.00 a month? Thanks - very interesting.
My insurance and/or Medicare picked up the approximate $2300. monthly cost. Your MO or urologist has to help you get qualified with either Biologics or McKesson Robbins. It all start with a phone call to the Orgovyxx folks......they will spell it out
My doctor stopped my treatment after #5. Risk was too high for any potential gain. A few months after I stopped with number 5 I started having balance problems and eventually ended up with no strength in my ankles. I have largely regained my balance through therapy, but still have my loss of ankle strength and significant foot pain even though I take Gabapentin three times a day(600 mg). Stop now based upon my experience. Wished I had stopped at 3 or 4 chemos.
My PSA was 10.8 with a Gleason score of 7 when the doctor sent me for a biopsy. Had five of twelve hot spots all on the right side with metastasis to the right seminal tube on the right side. Did 18 months of Lupron along with 39 treatments proton radiation in Knoxville, TN followed by five docetaxel chemo treatments. Three years after treatments have ended my PSA is <.2. I have considerable neuropathy from the chemo. No side effects from the radiation that I can detect.
600 mg of gabapentin three times a day. Did therapy with professional over a year until I got my balance back 90%+. Still walk and do therapy 2-4 days per week. Take Super B12 Complex one tablet per day and just started BioSmoothe Pro, two tablets per day.
Hi Tom, I finished 6 rounds of docetaxel combined with Keytruda in January. I am 55. To battle neuropathy, I exercised nearly every day. Running, hiking, walking, surfing, Peloton, circuit training...basically anything to keep my body strong and in motion. I don't know if that was the difference but I avoided all chemo side effects except fatigue and chemo brain. Maybe something to discuss with your doc. Good luck, Brian
I have been doing the same. Really can't walk too far cuz I run out of gas but go as far as I can and swim every day 10 to 15 laps as well as do exercises and lift light weights.Did your keyruta of work?
Hi Tom, It's too soon to tell. My PSA had been dropping until my last reading 2 weeks ago. Jumped up a bit. I think there are other factors at play. Bottomline, it's just too soon to know. I don't think there is particularly strong evidence that Keytruda will work even though I have a targetable gene mutation. My MSI is stable. So this is definitely experimental.
See the following and consult with your MD. My husband has had ideopathic peripheral neuropathy for 20 years. His GP urged him to try Metanx (Vitamin B Supplement), about 12 years ago. It's formulation is not like OTC mega B vitamins. He takes 2/day. You can read about Metanx at website and several other sites, including:
I haven't iced anything during chemo, and have had only minor neuropathy during 4 different chemos totaling 27 cycles and counting. I give credit to two things: 1) stay as active as possible, even if it's only a short walk around the house, and 2) take a B complex vitamin. The B vitamins were my oncologist's suggestion and it seemed to make a difference.
I do get mild symptoms of neuropathy, but nothing that has accumulated significantly after multiple cycles.
Reading your profile, I'd hesitate to skip the 6th cycle since you've already tried some second generation anti-androgens and have progressed on those. BTW, it's possible that the chemo will re-sensitize you to the anti-androgens, per some rumors I've heard. And of course, I'm not a doctor, this isn't medical advice, just my personal opinion and personal experiences.
I mean it can make you hormone sensitive again, so that Lupron/Abiraterone/etc. will regain it's effectiveness. I have some vague memory that the chances of this happening are about 30%, or about 1 in 3. Some lucky men have been able to alternate between docetaxel and abiraterone a few times.
In speaking with Dr. Beltran at Dana Farber about my NEPCa, we talked about the possibility of finding about three treatments that are effective against my cancer, and potentially being able to rotate through them for awhile as when the cancer develops resistance to one treatment, it can make it sensitive to a treatment that acts differently. I suspect the odds of this aren't very high, but they are non-zero and when there aren't many other options available....
FWIW, when I started folfiri last December, I recall reading that it produced stable disease in about 1/3 of patients, and reduced tumor size in another third, and the final third didn't get any response. At last scan, my liver tumors were <25% of the size they were in December, so I got a great response even though there was less than a coin flip chance that would happen.
We take a lot of arrows going through this, it’s a real battle. It’s hard to come out the other side without some damage. But I’m here for my family and enjoying each day, still working and feel good again. My first round of chemo gave me tinnitus and the second round some neuropathy (which has mostly healed on). Well worth the side effects- stay strong brother! You got this
Round 1 in 2016 knocked it from about 30 to undetectable and eliminated all cancer in my lymph nodes and some other soft tissue masses I had. I was pretty clear for about a year after that. Round 2 in 2019 knocked it down initially from like 120 to 60, but then it started creeping up while on docetaxel 65, 70.
The chemo will reduce your blood counts making you tired and will take away your endurance. This is likely compounded by your reduced nutrition from minimal appetite. After 6 docetaxel shots, I had to go on a course of filegrastem to help my bones make more blood cells. It helped and I ended up doing 9 chemo shots reducing my PSA to 0.03 and shrunk my tumors by 60%. Chemo works on the microscopic level using the blood stream as a conduit. However, chemo doesn't get everywhere so I also needed radiation treatment to further reduce the tumors - it also got my PSA down to 0.01 - so a good result. Its been 10 months since my last chemo shot and my neuropathy is almost gone from my fingers and toes, but the cold weather makes it worse. Its mild and just annoying. You may notice chemo rings growing on your finger and toe nails. Mine have grown out now from my fingers but I still have a few left on my toes. Strange but true, there is a name for it, Dr Google will know. Hang in there brother, you've got this, cheers 😎 DD.
I have had 12 treatments with Docetaxel , and I have experienced tingling as well but doesnt sound nearly as bad as yours , compression socks help , not sitting in the same spot too long , I am not too concerned about mine unless it starts to get worse , good luck
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