Neuropathy and cabazitaxal: My husband... - Advanced Prostate...

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Neuropathy and cabazitaxal

Sipj profile image
Sipj
34 Replies

My husband is scheduled for his first cabazitaxel infusion this Friday. He’s had some neuropathy in his feet, now it’s going up to both legs with one swelling. He’s into very advanced stage 4 PC and has bone Mets throughout with high bone pain, high PSA (70, doubled in last month) limited physical abilities and 3 fractures in his back (palliative radiation has helped). The chemo is the last ditch effort as he has failed all other SOC (Xtandi, Abiraterone, Docetaxal, ADT- resistant now).

Question- could this chemo make neuropathy worse, and is it something we should be concerned with.

He did do 6 rounds of docetaxal 8 months ago that helped for a couple months or less.

and any suggestions to deal with the increasing neuropathy issues?

52 years old dx 2/20/2021 with bone Mets throughout skeleton

Thank you in advance for any advice.

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Sipj
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34 Replies
rogerandme profile image
rogerandme

Just want to say that I am so sorry you and your husband are going through such a rough time. I will keep you in my prayers...

Sipj profile image
Sipj in reply torogerandme

Thank you 🙏

EdBacon profile image
EdBacon

The likelyhood of neuropathy with Cabazitaxel is low, certainly lower than Docetaxel. The PROSELICA trial showed 0% grade 3-4 neuropathy at a dose of 20mg/ Square meter body surface area and 7% for all grades of neuropathy. It's a low risk.

If it works, he should get some pain relief. I was in serious pain, on meds 24/7 when I got my first infusion. Pain went down to nothing in less than a week.

Also, the side effects have been quite a bit milder than Docetaxel.

Sipj profile image
Sipj in reply toEdBacon

Thank you, that is good to know. His pain is very extreme, 20mg oxy every 4 hours, 125 mcg fentanyl patch every 48 hours. If this helps pain it would be a miracle. I’m glad to hear you did well 🙏

EdBacon profile image
EdBacon in reply toSipj

I was maxed out on my pain meds (Norco plus over-the counter meds) and still in a lot pain, in tears at one point, just couldn't take it. Got the infusion on Friday 8/12 and pain was still getting worse the day after. But after that it started to slowly improve. I woke up Tuesday with no pain. I couldn't even believe it. Don't know how common that it is, but I didn't expect relief that quickly.

Sipj profile image
Sipj in reply toEdBacon

That is amazing…do you have bone Mets- and have you done docetaxal?

EdBacon profile image
EdBacon in reply toSipj

Yes, I've done Docetaxel for 6 cycles. I have bone mets that are very painful to the point I could barely walk or get out of a chair.

I agree with his doctor 100% about going on chemo now and not waiting. I'm in the same situation and that's what my doctor recommended. There is no way I was going to wait for Pluvicto when there is good, effective treatment available now.

The plan for me is to do the chemo as long as it works and I can take the side effects. My doctor will give me up to 10 cycles.

One thing to keep in mind is if he does Radium 223 (Xofigo), he won't be able to do Pluvicto after. That may change down the road, but that's how it is now.

Sipj profile image
Sipj in reply toEdBacon

I wish you well and appreciate you taking the time to respond with this information. It sounds like you are doing good considering…

tango65 profile image
tango65

He could be treated with Xofigo or with Lu 177 PSMA instead of chemotherapy. Both treatment has shown to prolong life in RCT, He could request the vaccine Provenge which could help to prolong life.

Consider doing a direct biopsy and if it is not possible a liquid biopsy to study the genome of the cancer, and do histological and IHC studies, The cancer may have mutations which make it susceptible to treatment with olaparib, rucaparib, keytruda or similar drugs

Sipj profile image
Sipj in reply totango65

He is scheduled for first Pluvicto September 28- because of shortage. MO wanted chemo started asap because of seeing his numbers and PSMA scan. She is not hopeful he could wait another month for treatment. But it is the next step if he is able 🙏

tango65 profile image
tango65 in reply toSipj

In that situation he could compromise to a session of chemo and if nothing happens to the neuropathy he could risk a second one.

Sipj profile image
Sipj in reply totango65

Yes- MO says he will be doing this chemo for the rest of his life- or until his body cannot take it.

tango65 profile image
tango65 in reply toSipj

Perhaps the Lu 177 PSMA treatment will give him a break from the chemo. The other possibility after the Lu 177 PSMA is to consider clinical trials.

A biopsy may be important to select a clinical trial. There are many clinical trials available. He may need to consult with doctors a different institutions to see what they recommend.

Sipj profile image
Sipj in reply totango65

Yes. We had been trying to get into a clinical trial (our doctor recommended) but our insurance keeps denying- we appeal, peer to peer, hours and days of me on the phone with them. They take too long and a different patient was put on the trial. Our options are limited with our insurance. Still waiting for approval for the Pluvicto.

tango65 profile image
tango65 in reply toSipj

Clinical trials do not charge anything related to the trial. They could charge for things related to the regular care of PC.

One option could be to look for clinical trials at NIH in Bethesda, since they don't charge anything and help with travel and lodging.

cancer.gov/about-cancer/tre...

Sipj profile image
Sipj in reply totango65

Correct. This trial needed doctor follow ups and lab work weekly- which the MO we are seeing is out of network- they would not cover any of that. We are near Seattle Wa. The trial would pay for travel, stay, and the meds, just not the follow up care.

My husband did many treatments with Carbazitaxel over 5 years. It was very effective in keeping the cancer at bay in his case. He did have some neuropathy but he did 2 courses of docetaxel prior to this and that was when the neuropathy started.

Sipj profile image
Sipj in reply to

Thank you for the hope 🙏

Cynthgob profile image
Cynthgob in reply to

How frequently did he take the Jevtana? And for how long? 5 years???

spw1 profile image
spw1

I wish your husband all the best from this treatment. Do not give up hope. My husband has had 4 infusions of chemo and his PSA has risen from 99 (pre chemo) to 414 just before the previous one. The MO may change to Cabazitaxel next time, we hope. I understand exactly how you feel as my husband is resistant to ADT, Enzalutamide and now looks like Docetaxel. I try very hard to focus on possible solutions but hope that your husband's pain can be managed. It is difficult to feel hopeful when pain persists.🙏

Sipj profile image
Sipj in reply tospw1

I pray that you also find more solutions to give you more time with him. It’s unimaginable what these men have been through, and we along with them.

MechD profile image
MechD

I’m so sorry for what you two have had to endure and am praying for relief. I have had some peripheral neuropathy in one heel with cabazitaxel plus carboplatin (started Jan 2022). It is not serious and have had some improvement. I also had a blood clot in that same leg so I’m not sure if the neuropathy could be related to that.I don’t see any mention of testing for BRCA gene mutation. Has that been ruled out?

Sipj profile image
Sipj in reply toMechD

Thank you for your response. Yes it has been ruled out, genetic testing was negative.

dmt1121 profile image
dmt1121

I am sorry to hear about your husband. Please see my last post on neuopathic pain. It may help. I would think carefully about the treatment likely benefits and quality of life issues and discuss with his oncologist. Remember, it's his decisions, not the doctor's.

Sipj profile image
Sipj in reply todmt1121

Thank you, that post is an interesting read. I will definitely refer back to it if he gets to that point. And we are definitely weighing out the quality vs quantity. He is at the end of the road and will do anything to stay on his feet as long as possible. Unfortunately I think his body is going to reject treatment options before his mind. He is just not strong enough.

Prayers to you that you continue to find ways to ease the symptoms of this horrible disease.

Cynthgob profile image
Cynthgob in reply toSipj

I know what you are saying about the end of the road. Tough decisions

dmt1121 profile image
dmt1121 in reply toSipj

Yes, it can be very hard to make those choices with such high stakes. I try to research the treatment and quiz the doctor on percentage success for the treatment. Even if it is the very last treatment option, that I have available to me, I would only consider chemotherapy if there is overwhelming evidence of its value to extend my life in a meaningful way without placing me in more pain and discomfort.

It's a personal choice. I hope you and your husband make the right choices for you.

Sipj profile image
Sipj in reply todmt1121

Thank you. Chemo (docetaxal) worked for a month or two after stopping it beginning of this year. And it wasn’t so hard on his body but alot has changed in 8 months…

dmt1121 profile image
dmt1121 in reply toSipj

Health conditions can change relatively quickly with this disease. Hope things work out as smoothly and pain free as possible....

Cynthgob profile image
Cynthgob

In the same situation. Did 6 rounds of pluvicto recently! Psa doubling

Sipj profile image
Sipj in reply toCynthgob

That is heartbreaking. I’m sorry.

Cynthgob profile image
Cynthgob

Have you looked into carT?

Sipj profile image
Sipj in reply toCynthgob

We have not. What is it exactly? I don’t know how much time we have for new ideas.

Bunkerboy profile image
Bunkerboy

Really sorry to hear the terrible time you and your husband are experiencing. My prayers go out to the both of you and hope relief will come soon🙏🏻🙏🏻🙏🏻

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