Hi. As a newcomer I have explained most things in my profile. Was walking about reasonably well until after docetaxel × 2. Seemed to recover from neutropenia and sepsis. Then got chest infection. Not recovering well. My PSA on diagnosis was 821. It is now down to 3.1. Since diagnosis last September have monthly Degarelix injections. Chemo was stopped. Oncologist phoned to say he was happy with PSA and to come back in 3 months. Covid means they don't won't face to face appointments.
After the chest infection, I can hardly walk. I am sleeping almost 24 hours a day .No appetite. I am quite worried and don't know what to do next. Was interested in Arbiratetone but was told I was not well enough. What next? All advice greatfully received. Sorry for ramble, will be more concise next time.😁
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skulleryman
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Sorry about your rough start. But most of had a rough start also. Getting your PSA from 821 to your current 3 is very good. There are many other options for you. Most of us started with 6 infusions of chemo. That brings your PSA down. I've been on the zytiga prednisone route. That didn't work. Went on a clinical trial after that, combo of olaparib and cediranib for nearly two years. Unfortunately it stopped working. I'll be starting on a new clinical trial in a few weeks. So there are other options for you. Really get involved with your MO and ask questions. You run the show bro.
Thanks for your reply. I do appreciate the lowering of the PSA and until recently was quite positive. My bone scan was clear and I was getting about.Because I am in the UK it is not always the case of running the show .I constantly ask but it is as if I am questioning their ability.I constantly have to chase all professionals involved in my care. My partner is a great help, so I am lucky that way. Just scared that I am on a downhill path of bed and no food etc. My outlook is normally positive and I still have my humour.
I use the NHS Oncologist assigned to me, Dr David Dodds .He is highly regarded by everyone (apart from me) He is in charge of the Beatson clinic in Glasgow, which is also highly. regarded. I don't have private cover. Meant to add that I am on Longtec Oxycodone 15mg twice a day.Thanks for reply.I am normally sleeping by now.
So the bad news is, you got sepsis/infection; but the good news is you responded very well to even the brief chemo and continuous ADT. How are you getting monthly degarelix shots if you aren't going to the hospital? Did you switch to multi-month shots Lupron or similar?
It's true that the newer hormone therapies increase fatigue, so maybe they want you to recover from the fatigue of sepsis somewhat before starting you on that. Darolutamide (Nubiqa) may cause less fatigue than some of the others, but it isn't indicated for your diagnosis. However, your oncologist may be able to write letters and get your insurance to agree to cover it because of your fatigue situation. If not, you seem to be doing well so far.
Fantastic.Open to all suggestions. Will have to do a wee bit of research as that is new to me. I am currently using banned THC, so who knows? I have waited until I was a pensioner to become a drug ridden criminal! 🤣
Wonderful to hear! I learned that trick years ago from a friend who is a professional singer and have done it ever since if I feel a cold coming on. It helped my husband a lot as well. I use good grade H202. It was available where we lived in the southwest of the U.K. but not widely like here.
Neuropenia, it must be the word of the day. I just found what it is as my white blood cell count came back showing an extremely low count. Two weeks ago I completed my 6th Docetaxel session and apparently my WBC count is in free fall. Anyway, my MO called, my Oncologist nurse called and my Urologist postponed my Cystoscopy/TURBT, due tomorrow, by two weeks. So now I've started a 5 day course of Filgrastim to boost the production of my WBCs. Oh well, a minor set back. Strange your Oncologist didn't offer you something similar. Keep up the fight brother 😎 DD.
I wouldn't look at your chemotherapy as a failure. It's an optional, additional treatment for you at this stage and your PSA could continue going down with just ADT. You've also gotten a good response so far. That's positive.
It's possible for you to go back to chemotherapy at a later date if/when you need it. There is also the option of taking a lower dose more often which for many gives less side effects, but still works against the cancer.
In the meantime there are other good treatment options for you when your PSA stops going down such as Enzalutamide or Abiraterone.
I've never heard of using h2o2 this way. Do you happen to know how it works to clear sinuses? Food grade is 35% h2o2, right? How do you get it down to 1/2% - you buy it that way or concoct it yourself, like so much h2o2 in so much water? Would this be something safe to use in a CPAP, where it would be direct inhalation rather than diluted in the air via a humidifier? I've read it should never be inhaled. I live in a highly allergic environment and have to use a steroid inhaler (fluticasone) to be able to breathe at night well enough to use the CPAP, and the steroid's effectiveness isn't all that great much of the time. Always looking for a better way.
Had my 6 docetaxel 3 years ago along with 3 monthly triptorilyn acetate. PSA went down nicely, from 1096 at diagnosis, to 0,08. then started slow upturn 6 months ago. My onco put me on bicalutimide 2 months ago. PSA still slowly rising, now 2.2. Now onco is putting me on enzalutimide, have yet to start this. All part of the wonderful journey of PC. I'm also in UK
You have a lot of options ahead of you. Just make sure (if possible) to go to a reputable cancer center (Mayo, MDA, MSK,..), and build a team of doctors around your needs. I do experience some fatigue with Abi and ADT, but a daily exercise routine helps a great deal.
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