So after a week at home Dad's back in for his review. His primary oncologist said his levels are still very low (Hgb 8.5, platlets 22) he said the only treatment on the table is chemo, jevtana. And Dad would need to be an inpatient for 3 weeks for the infusions so they can monitor his levels give infusions, nutrions, mange side effects etc. He said its still very risky and no garontees.
At home Dad is very fatigued, pain meds are just about hitting the pain but he is still having significant flare in his ribs (the only place that hurts) Radiation oncologist today said it is likely post radiation flare. He advised Dad to get the Chemo, that it would treat him as a whole rather than spot radiation which is just one area at a time (and still impacts platelets) He said Dad looks strong and needs to do the chemo before he becomes too weak.
I need advice from any of you who have had this chemo, are the side effects bad? He did 9 rounds of doxetal at the beginning and it was tolerated OK but his disease was on the move within 6 months.
Dad doesn't know what to do and I can only give him the information I have, I've told him as always its his decision and we will back him 100%. The frame of mind he has had is quality over quantity but his quality isn't great now as it so is it worth fighting and trying the chemo?
Pain managment team said from their point of view they recomend hospice for pain management to see if QOL would improve with a 2 week admission but I don't think that's something he will consider.
All advice welcome.
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Nickhmcg
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Chemo can do a lot to relieve his pain. I'm sure they will give him Neulasta with it, especially since he has to stay in hospital.
Thinking that we know what to do is a problem . Because We don’t ! If there is No real treatment choice except chemo for him now ? Then I feel he must try to Pursue it . It can help . There is no sugar coating what he’s going through . If it helps the pain , it’s worth it . Keep hope alive . I’m sorry he’s in this position . I’m happy that he has you caring for him .He isn’t alone . I applaud your great love for dad? Thank you ! 🙏❤️
Well spoken Scott! I like your thinking. No one knows for sure. Allen is very smart and well read. If he thinks it may lessen pain with Neulasta, then Boom, I would be on it. No person need be in massive pain in their final chapter. There has to be a better way.Mike
T A is our resident expert on all treatments . Still , he’s not a doctor so we follow the MOs advice . Anything to Quench the pain and suffering my friend . Good luck , in doing so ! 😎🍀✌️
I know they aren't approved on NHS so it might be the same in Ireland - you could get the chemo and also consult an oncologist privately to see if they think an immunotherapy could work? Unfortunately, if it is a possibility I guess you would need to pay for the drug.
Honestly some of these consultants take arrogance and lack of empathy to a higher level - I thought it was just the UK but seems you are stuck with some too..... I'm so sorry you are all going through this.
I am a NHS patient in the UK and I know treatment options are very limited especially if your older. Seems its cheaper to let the disease progress than try to extend life. Have you considered getting a second opinion and treatment in India or Australia? Cheaper treatment and they will open all options if you can pay. Its the course I am following because Im not ready to die quietly in a corner. Will sell my home to fund it if I have to. Good luck, this disease is a difficult journey.
I am on a regimen of Jevtana and Carboplatin, as I am BRCA2+, and have recently completed my third round every 3-4 weeks. Neulasta is added with each for boosting white blood cell count. Side effects of fatigue, nausea and dry mouth do subside after about a week after each treatment. My PSA dropped from 62 to 14 after first treatment, then to 6 after second treatment.
I've never had chemotherapy but I entered "Jevtana" in the "Search HealthUnlocked box on the upper right corner of the page and got 179 hits and 262 hits using the generic name "cabazitaxel". Skimming through them, you may find subjective accounts of what the treatment was like and what effects it had.
Technical information is available from the FDA. See accessdata.fda.gov/drugsatf... . Page 21 of the PDF has reports on two clinical trials including charts of median survival and other outcomes in the trials.
There's a possibly easier to read summary on Medscape with a useful index on the left side. See reference.medscape.com/drug... .
It looks like your Dad is facing a tough fight. I hope that he, you, and the rest of the family are able to take advantage of the time left both practically, to get affairs in order, and emotionally, to enjoy life and your remaining time together.
Thank you for all of your comments, Im finding it frustrating getting information from his primary oncologist. The feeling I'm getting is they have given up on Dad, I'm aware his platelet levels are low but I've read so many instances of patients getting regular transfusions for treatments who have similar levels to Dad. His oncologist was pretty much talking him out of the treatment (jevtana) while giving him the option. Also dismissing any other treatment avenue was hard to hear when there was no explanation given.Dad's only pain is from his Rib cage, I know he has extensive mets with heavy disease burden but I just can't understand how he is meant to just give up and stop fighting while he is so young and still has no organ infiltration.
I think part of the problem in the UK, so I'm not sure about Ireland, is that the specialists that are seen privately are the same specialists who work within the NHS system. That means that most of them stick rigidly to the SOC available in the NHS which is, of course, restricted by funding. Some specialists must be thinking outside the box and looking to other countries at what is being tried there but how do ordinary people like us know how to find them? A well known and extremely able and accomplished oncologist, Prof Stebbings I think is his name, was recently suspended from practice and publicly humiliated by the press for doing just that. Did he go too far? probably. Did he try his best to help and in many cases was successful - absolutely. I suspect that understandable safe guards set up within the system make it difficult for such people to try new treatments even when nothing else is being offered. That said, your oncogist is offering chemo so that is something and as you say your dad could try it and then see how he feels about continuing - as long as he can stay safe during the treatment. I hope everything gets better soon. My heart is with you.
I feel your pain and frustration. National Health systems in Europe in many cases seem perfect on the paper, reality is gruesome for many of us. I hope you can find a doctor who will fight with you and for you.
I have not gone through chemo. I was diagnosed with prostate cancer stage 3b when I was 54 and had a prostatectomy. It came back, and I had radiation. So far so good, but if it comes back again, then there is no cure. I would eventually die from prostate cancer.
I was primary care giver for my mother, who was eventually taken by cancer. She underwent some chemo that didn't work. If I could do it over again, i would not have put her through the chemo. Now my dad is stage-4 prostate. He's 98 and chemo is not an option, so he just had hormonal therapy and radiation.
You said that your dad (or maybe it is you) wants quality of life over quantity. Now I have no idea over the efficacy of the proposed chemo treatments for your dad, but I believe that for a while at least, you dad's quality of life with go down. I can feel your pain and frustration, but just be clear what your dad wants. It sounds like you can communicate well with your dad to understand his needs. I recommend the book "Being Mortal" by Atul Gawande.
I realize that probably isn't helpful to you in this moment. I kind of know the feeling, from when I was caregiver for my mom, and i so desperately wanted to extend her life.
BTW, I am glad to hear that you dad is at least on hospice care. It sounds like you are in the UK. At least here in the US, I think you cannot pick a bad hospice care. If for some reason, you find one that doesn't work for you, you can always switch. I think they are the most caring wonderful people that work in hospice care. I regretted not getting my mom sooner on hospice care. Part of the delay was because I wanted to get a Japanese speaking nurse. In any case, she lasted less than a week under hospice care.
With my dad, though it may seem to some people that it is premature to start him on hospice care, we will be starting tomorrow. That's from the lesson I learned from being my mother's caregiver - as long as the patient is ok with it, start hospice care as soon as possible.
I personally think YOU need to be very clear on what his options are. Write them down on index cards. Sit down with your dad and help him make the best decision for himself. Sadly, sometimes there are no “good” decisions, just the least rotten one. Good luck!
Hi, I am definitely not as expert as some of the other men here, but is your dad also adding in other weapons at his disposal? Diet, suppliments, Gut bacteria management, ... and other things? Common repurposed drugs.
There's a guy in England that I have followed over the years. His daughter died of cancer and he has devoted his life to finding the latest info/articles on cancer fighting agents and bringing them to peoples attention.
Look up CancerActive on the web. Chris Woolams
Once in, type in Prostate Cancer and search his website.
Hope things are going OK for you and your dad, Nickhmcg. I watched "Belfast," and thought of you. It was such a great film, I have been recommending it to friends and family.
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New on this forum, need help for my Dad please
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