Docetaxel: Anyone willing to share... - Advanced Prostate...

Advanced Prostate Cancer

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Docetaxel

JolleySprings profile image
27 Replies

Anyone willing to share experiences with Docetaxel? Good, Bad, and Ugly.

Any recommendations or advice to help with side effects etc.

My husband is in year 7… He has been on the traditional SOC with ADT… Lupron, Firmagon, Nubequa, and lastly Zytiga. All have ceased working.

His PSA has risen to 47.

Auxium scan shows pretty extensive growth in Retroperitineal Abdominal area. As far as scans go, nothing has shown up in bones or major organs.

He had CDK12 and ARv7 loss mutations.

What is the likelihood we will gain much by doing CHEMO?

Thank you!!!

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JolleySprings profile image
JolleySprings
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27 Replies
Big_Mcc profile image
Big_Mcc

You cant say for sure until you try it. If you are running out of options it would be silly not to try. I had 6 rounds of docetaxel. Not as bad as I thought at the time but after a year since treatment I am still suffering the fatigue and lack of energy. My hair grew back and a lot darker so that was a plus. God be with you in your journey.

JohnInTheMiddle profile image
JohnInTheMiddle

This whole thread might be helpful. So there are separate items on ice versus neuropathy. I did six sessions and they weren't too bad. healthunlocked.com/advanced...

Irun profile image
Irun

I had 6 rounds at the start of my journey 9.5 years ago . I was relatively young for pca at 49 however I was reasonably fit so kept on running most days and completed marathons on weeks 13 and 15 of treatment . They have since proved that exercise gives you less side effects and helps the chemo work better .

I had a bit of neuropathy, hair loss , my tongue went black annd I lost sense of taste and nails cracked but all reversed after I stopped . It was explained to me that docetaxl basically attacks fast growing cells ie cancer but also what grows fast …. Hair/nails/inner mouth repairs , makes sense .

Now 59 still running ultra marathons and been on Zytega since year 2

Hope that helps

Rogersw profile image
Rogersw

I had 4 sessions back in January/February and I found the side effects not to bad with the elexception I had problems sleeping which I put down to the vast amount of dexamethasone I was given. I have a full head of hair and that stayed in place ( I used a ice cap) and no major side effects except fatigue. However the guys in white coats revealed that it was not working. They did offer me am Alternative chemo treatment but said it was unlikely to work and could be unpleasant so regretfully we are letting nature take its course. But I would say give it a whirl you could well be one of the successful cases

JolleySprings profile image
JolleySprings in reply toRogersw

Ugh! I’m so sorry it did not work for you! Do you have any specific mutations which might be the reason of ineffectiveness?? 🤷‍♀️

Rogersw profile image
Rogersw

PS Ia m in my late 70‘s

j-o-h-n profile image
j-o-h-n in reply toRogersw

Let's hope, not too late..........

Good Luck, Good Health and Good Humor.

j-o-h-n

EdBar profile image
EdBar

I had early chemo per CHAARTED trial and for me it was the most difficult treatment I’ve been through in the past 10+ years (read my profile for treatments). Fatigue, flu like symptoms, loss of hair, brittle fingernails that nearly fell out, wiped out my WBC and immune system, loss of appetite and taste, the lining of my mouth peeled and I would get sores on my tongue. But I grinded through it and it’s probably one of the reasons why I’m still alive, it also allowed for other treatments that require one to have chemo first.

Ed

JolleySprings profile image
JolleySprings in reply toEdBar

I surely hope you continue to have success fighting this beast!!!

AlvinSD profile image
AlvinSD

I had six cycles of Docetaxel in Summer / Fall 2022

Here is a link to a post I wrote after finishing about what helped me.

healthunlocked.com/advanced...

HikerWife profile image
HikerWife

Would definitely recommend icing hands and feet, and sucking on ice chips. Helps mitigate neuropathy, problems with nails, mouth and tongue sores. My husband only had 3 rounds due to leaking/extravasation event that damaged his arm, but he had NO signs of any of these problems.

Maxone73 profile image
Maxone73

6 rounds almost no adverse effects and it worked very well

6 sessions of heavy lifting + some cardio per week, I have never stopped working out during the treatment

InqPers profile image
InqPers in reply toMaxone73

Started Docetaxel 6 rounds when I had recurrence immediately after initial RP, and did it along with ADT/ABT/Prednisone. SEs were significant fatigue a few days after each infusion, hair thinning (not loss) after round 3, low WBC counts my MO dealt with with a week of daily Neulasta injections. Like Max I tried to stay active with running in early morning before fatigue could set in. Thank God no neuropathy, as I did not know about ice/ice caps. I would recommend this just to be safe, however. All in all, not to bad and very effective for me.

Maxone73 profile image
Maxone73

but look also into this: nature.com/articles/s41598-...

London441 profile image
London441

I had same side effects mentioned through 4 cycles. Overall pretty mild but concur on the exercise. For all side effects from all treatments, exercise works like magic.

RoseDoc profile image
RoseDoc

The first two aren’t so bad. You will be hyper from the Decadron for about 24-46 hours. I had severe joint pain for a day or two later. I used the Penguin Cool Cap so kept my hair though it did thin a bit. Over time I lost my taste, fatigue set in. I still have some neuropathy in my finger tips despite using the ice mittens. Also used iced socks.

A year later still have some tingling in a few fingers on the right hand. My eyebrows thinned appreciably, not so sure what to do about that. As chemo goes, it’s not too bad. I worked the whole time I was on it. Worked out some but was waaay too tired most days. Took a few months to regain my strength using a trainer.

It worked as PSA became undetectable after 4th treatment and has remained that way one year later.

JolleySprings profile image
JolleySprings in reply toRoseDoc

Praises for one year of nondectable PSA! I hope that trend continues!!

RoseDoc profile image
RoseDoc in reply toJolleySprings

Thank you!!

March1124 profile image
March1124

My dad (76) will be completing his 6th infusion next month. Overall, his side effects haven’t been too bad. (He would tell you losing his mustache has been the worst part😉)

He does have an adverse reaction at the time of infusion. He turns bright red, his blood pressure spikes and he gets intense pain in his lower back. They stop the infusion, restart and then all is well. It’s like his body says “No thank you!” each time docetaxel is introduced to his system.

His MO has told us it is vital he push through this if he can. We’re grateful there’s only one left as it is stressful. We have been told it is rare for this to happen beyond the first or second infusion, but as scary as it is, it is also working and my dad feels it is worthwhile

JolleySprings profile image
JolleySprings in reply toMarch1124

Thank you so much! Such an encouragement!!

Carnivore45 profile image
Carnivore45

You don’t say if you had the CT-PET/PSMA scan, but that is the best way to locate any spread of the PCa. However, even that scan is only 90% reliable. Chemotherapy goes after the PCs no matter where it is and it is part of the Triple therapy regimen which is the new SOC. Chemo with Docetaxel can be tough. There may be factors that can preclude an individual from having chemo.

You also did not mention any surgery or radiation. SBRT of the prostate after chemo or without chemo should be discussed with the MO. I don’t know enough about your case and I’m not a doctor but based on personal success and lots of reading, I think you should talk about sequencing chemo and SBRT. Best wishes to you.

JolleySprings profile image
JolleySprings in reply toCarnivore45

Thank you… I have all our history in my hubby’s bio.

Yes! Oh my! We have done it all!

We are in year 7! In 2017 he had RP… at Mayo in Rochester. All clear. Gleason 8… Biochemical Recurrence within 8 months… since then, Auxium scans, PSMA scans… and CT scans…

He has had 29 rounds of IMRT, Cryotherapy, ADT-Lupron, Firmagon, Daro, a NUBEQA, Zytiga… and all of it worked for a period of time.

4 PSMAs were done all clear but with a rising PSA… finally I INSISTED to do a scan with contrast (a Auxium) and it showed Extensive Retroperitoneal Abdominal growth. Our Oncologist is Dr. Rahul Aggarwal from UCSF. He is an expert in PC, and apparently only 10% of PC cancers do NOT express PSA. We waited too long staying on Zytiga and depending too much on PSMA scans.

So, this is where we are.

We are advised to do Chemo and then SBRT.

He has had multiple Pathology studies all of which report CDK12 mutations and ARv7 loss.

Apparently, CDK12 mutations are so rare there is no “tried & true” SOC that works.

His Boston Gene and Exact Sciences report both recommend Chemotherapy (Dox) at this point.

In looking for clinical trials Chemo is often one of the eligibility requirements.

I hope this explains our situation a bit better!

Carnivore45 profile image
Carnivore45 in reply toJolleySprings

Wow! You have done a lot. Thanks for the additional information. I hope that the chemo SBRT program will be the answer !

Jdhanoa profile image
Jdhanoa

My father went through 6 rounds of chemo last year. This is what he did that helped him immensly:

1. Ice hands, feet and head he had no neuropathy and while he did lose some hair on his head, he did not lost all of it (maybe about 20-30%). Below are links to what we purchased from amazon. (amazon.ca/gp/product/B09W5H...

(amazon.ca/gp/product/B08KD9...

2. Ice chips during chemo

3. Heavy moisturizer (udderly smooth brand is the one we used)

4. He did get an infection after his first round, however after that first round we implemented filgrastim injections which help protect white blood cells for 5 days during each chemo. The side effect of this medication of back pain. However, we found taking Claritin on injection days helped with the pain

Best of luck to your husband

JolleySprings profile image
JolleySprings in reply toJdhanoa

Thank you Sooo much for your response! Yes, we have already purchased the ice cap, hands and feet gloves! Your response is encouraging!

All the best to your family! ❤️🙏🏻

Tinuriel profile image
Tinuriel

My husband has completed 10 rounds, glad for a break this summer (family vacay and son's wedding). But it was very effective for him, PSA dropped from 170 to 1.5, and the PSMA scan showed significant reduction of his bone mets. Fatigue and digestion issues were the worst SEs for him.

JolleySprings profile image
JolleySprings

Thank you so much for your response!!!

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