Previously on HealthUnlocked ... I started ADT in May 2017 with PSA of 7.5 and a single positive lymph node in the pelvis. 2nd line ADT (Casodex) started in Nov 2017. By Christmas PSA was 47 and I had 5-10 lesions in liver and multiple spots in the mysentry. I was scheduled for 10 rounds of docetaxal starting 29 Dec 2017.
This week - I got results back after Round 5. Thankfully I am getting a good result so far.
PSA after Round 1. 24
After Round 2. 7.8
After Round 3 3.6
After Round 4. 2.8
After Round 5. 2.0
I am going to Peter Mac tomorrow for Round 6. So far, I have tolerated chemo well, I have been putting on 5kg between each round (prednisilone makes you hungry!!) but I fast for 4 days around each infusion, and lose the weight again. Only issue is peripheral neuropathy in my toes. It started after cycle 4, it has not abated since cycle 5 (20 days ago) and MO debated whether to delay tomorrow's infusion. I said - no way - I would rather have neuropathy than PCa. MO said that that is response from most people and agreed to go ahead. Said that first 6 rounds are important, and we can space out the next 4 rounds if neuropathy doesn't improve.
So the trend is in the right direction, let's see how long it lasts.
But this damn PCa seems to come in many flavours and you never know what will happen next. I had blood taken for DNA repair tests, no defects were observed so there is no specific treatments I can use based on this. MO advises that next treatments are likely to be hormonal - abiraterone or enzalutamide I guess. But since I am already hormone-independent I don't know how much this will help. Since I failed ADT within 3 months I asked MO if I have ARV7 splice variant. He said that not likely otherwise I wouldn't have such a good response to chemo. And since I have visceral mets but no bone mets I also asked does this indicate neuroendicrine differentiation - same answer, not likely based on good response to chemo. So I asked - what is cause total resistance to ADT and PSADT of 1 month, prior to chemo. And the answer was - we don't know. So what are we gonna do next? Well, we will just try a few other drugs .... I would love to think that doctors know what is going on and treat the underlying issue but for the meantime its just routine standard of care treatment. What else can you do?
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Hazard
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I agree with you that your very rapid castration resistance and your visceral mets-only suggest that you may have some rare kind of PC that is inherently castration resistant. Most men with neuroendocrine prostate cancer have a mixed type. The adenocarcinoma in the mix respond to docetaxel, the neuroendocrine part doesn't. For that reason, they combine docetaxel for the adenocarcinoma part with carboplatin for the neuroendocrine part. The best way to find out is with a biopsy of tumor tissue, although a blood test for certain biomarkers, like chromogranin A may suggest it. The same biopsy can identify other actionable abnormalities that may be present: other rare types of PC, somatostatin receptors, SOMATIC (as opposed to germline) DNA-repair defects, and MSI-Hi/dMMR. If you don't have a tumor to biopsy, the Guardant 360 blood test can sometimes identify actionable mutations based on tumor DNA fragments.
Thanks Allan. MO has done a blood test for DNA repair defects which came back negative, but is not inclined to do a tumour biopsy at this time - he said that they may consider this once all other treatments fail - I don't understand this attitude, surely you should find root cause and treat that rather than shoot into the dark and investigate root cause after other stuff has failed. I also told him that my research tells me that many men in USA get carboplatin for liver mets - he denies that this is true - yet I have read quite a few reports of men on this forum getting carboplatin (and to good effect). Maybe I have imagined this.
Tumor genomics change over time, so a tumor tested now may be quite different from a tumor tested later. Carboplatin is only useful when neuroendocrine PC has been identified. It may be useful for some other reasons, but those are rare and in clinical trials.
Congratulations on coming out of halftime with the lead. It’s a tough Bowl Game, but you are clearly a formidable warrior up for the fight!
We are all wishing you the best! Please keep us posted. Hopefully the tip on icing from Tall_Allen helps with the neuropathy. It helped prevent neuropathy in my fingers...wish I’d used it in my toes!
Thanks James - I asked my MO about icing and he said that "you need to do it for an hour before infusion, during infusion, and an hour after - you will probably end up with frost bite". I am seeing a pattern here - he is not gonna support anything outside normal standard of care. But to be fair, I also asked my sis-in-law who happens to be an oncologist (G&O). She said that only thing you can so is to reduce docetaxal doseage, doesn't think that icing helps. Now I haven't got any neuropathy in my fingers (yet - touch wood) did you have any symptons in your fingers that were reversed by icing, or did you you just not get any? In the latter case, it may be hard to prove that this was due to icing?
I never had any symptoms with my fingers or finger nails. Just put on surgical gloves and held my fingers in a tub of ice while having the infusion. No need to do before or after the infusion. And you don’t get frostbite - just take your fingers out of the ice when it gets too uncomfortable. This is standard practice at our hospital.
I had not heard about the iced gel pads for the feet. I learned about that on this forum after I finished my 6 rounds of chemo. Wish I had known sooner so I would not have the neuropathy in my toes and the balls od my feet. But it’s not that big a deal and I’m used to it at this point.
Hope that helps.
Best,
James
To Hazard , good to be half way done. Who do you have for the halftime performance? Beyoncé ? The Stones? You attitude sounds good. Gives hope to me . I’ve yet to pleasure chemo. Who would have ever thought that we need a dam degree in rocket science to extend life ? What is amazing is what the doctors DONT know.. I have some crazy experience with neauropathy.. everything from electrical spikes from a needle to an ice pick piercing at random intervals. Mainly in hands and feet but it can spike anywhere. Burning feet , thousand pins , Especially if you’re not exersizing or eating poorly. All made 10x worse by APC.. I use 30 mgs of cbd per day, and a powerful,homemade med. Mary. Oil. I’m good and pains are manageable and my life much more pleasant since I am saturated with Thc and cbds. Not for everyone. I feel that it’s helps everything including blood pressure and anxiety.. massage really helps with neauropathy also. Hot and cold switching helps too. There is a company I believe it’s King products and they make neoprene hot and cold pressure wraps for hands feet head and the entire body.. If I were in chemo I’d get them ASAP.. Hopefully you will get good results in this first round as I have had. Good luck..
Hi LuLu, I am a Beatles fan mainly but I couldn't book them at short notice, been playing a few LPs (Abbey Road and White Album) instead.
A friend of mine who likes a puff has given me some cuttings from one of his plants. I don't want to inhale anything, but I am prepared to make some oil and give it a go. Don't know if it helps neuropathy but it might make me feel better.... I also need to think about icing feet for next round of chemo. My toes are numb but no pain and it isn't a real problem at this stage, but I still have 4 rounds to go and I wouldn't want it to get worse.
Ice yourself.. It does help neauropathy. You can just eat it, if you don’t want smoke. You can make the oil from shake , leaf and bud, it’s all good. They even have a neoprene ice cap to save the dome. Good luck getting through this chemo shi. Have not had that pleasure yet... get to a better place friend. It is amazing how I’m getting into m7sic listening ina big way.. Let it Be... let it be......
I have been in this battle for almost six years (please see bio for complete treatment history).
I was diagnosed with liver mets in 9/17 and chemo combo was Docetaxel/Carboplatin for 6 cycles. PSA dropped from 10.8 to ,4 and liver lesions got smaller.
I iced hands and feet for Docetaxel infusion to mitigate peripheral neuropathy. Med Onc also suggested 100mg B6 orally daily to combat neuropathy.
I took Wisconsin American ginseng throughout cycles to moderate fatigue. Google Mayo Clinic and ginseng to see their trial.
Now on chemo break since 1/9/18. Great news for me and maybe you is a rechallenge with Xtandi. 2 months into my chemo break, we decided to give Xtandi a second chance (since I had taken it in 2015-2016 until it failed). Wonder of wonders, after 2 1/2 weeks of Xtandi, PSA dropped from 1.3 to .4!! Do not know how long this will last, but it lengthens my chemo break.
Thanks Mark, I asked MO about B6 and he said 'Well you can try it'. See my other responses above - he is not prepared to go outside the box. But I bought a bottle of B6 yesterday (200mg was only doseage I could buy locally) and will definitely try it.
I am pleased to see that Xtandi is working for you again. How long did it take you to reach ADT-resistant state first time around? I only took 3 months in my case, we tried Casodex as 2nd line treatment and it did nothing, then we moved straight to chemo because of liver mets and haven't tried Xtandi yet. I was a bit surprised when MO suggested that next treatment after chemo fails would be hormonal, but your experience shows that there is some value in going this way - I guess I will find out some time, not too soon I hope!! I want to ride this current respite as long as I can.
First time with Xtandi I got about 12 months, but that was after both Zytiga and high dose Ketoconazole failed.
I had Casodex at the very beginning of my battle, along with Lupron and Avodart, to make a triple blockade.
What is amazing about this disease and its treatment, are the multitude of treatment paths and drug combinations. I have learned that none of us are the same.
Hi j-o-h-n, does the Gabapentin reverse neuropathy or is it only a pain treatment? I just did a quick google search on Gabapentin and was interested to read that it can also treat restless leg syndrome, I suffered from this regularly until I adopted a gluten free diet 4 years ago after a positive coeliac test. I have experienced some mild RLS recently, it appears that there is a linkage (nerve related) between neuropathy and RLS that is being exacerbated by docetaxal.
Well as for me it's only a pain treatment. Confusing as it may sound I (we) get used to pain when tolerated over a long period of time...so I it's hard to say whether the pain is actually gone or I am just no longer aware of it. I no longer feel that my feet are burning or like I was walking on glass.
It's like tinnitus (ringing in the ear/s) which I suffer from, if I don't think about it then I don't hear it. (MIND OVER MATTER).
I'm sorry about my response but it's the best way I could answer you. I too have RLS but occasionally and only in the morning while lying in bed.
I have everything you can imagine from head to toe... but I still have my sense of humor.
You could say that you have it all you are the total package. I had that tinnitus before, that sucks... Take it easy friends . Thanks for keeping me laughing. That’s therapy.
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