Anyone have prostate resistant spread to liver &/or spleen and if so, what actions did you take with oncologist? My latest CT showed bone mets stable but now multiple spots showing in liver and spleen.
I am on taxotere every 3 weeks (round 10) and began Xtandi in March.
By the way anyone on Xtandi, in addition to tiredness have stomach churning/upset?
Jack,
I don't want to be silent in the face of your inquiry. I understand that you need answers to your questions. But I also don't want to give you false hopes. It is my understanding that liver mets are very serious and hard to control. The fact that you're getting them now, after a long course of chemotherapy, is also not a good sign.
My inexpert recommendations are as follows:
1. Make inquiries about further treatments, including experimental treatments like immunotherapy and targeted therapies like Lu-177. There _might_ be something that will do some good. It will be a crap shoot, but sometimes we get lucky.
2. Be prepared. Get your financial and other affairs in order. Write down things that you think your wife, children, or other people important to you should know. Make recordings if you wish. Locate a very good palliative care service and think about whether you might prefer to go to a palliative care clinic if it comes to that, or receive care at home.
3. Pursue further treatment, but not to the point of ruining the time you have left. Try to strike a balance between going for something that might really help versus wasting precious time on treatments that just add side effects with no serious hope of helping.
4. Don't neglect life. We know that we are all going to die some day. It happens to every one of us. If we let that destroy our spirits, then we would have been destroyed when we first learned the facts of life and death in childhood. You have some time left. Maybe it will be a good while. I very much hope that it will. Try to resolve that you will live during that time as best you can and that you will be a strong example to your friends and family and to everyone who knows you. I think that if we do that, we can be proud of ourselves and know that we have been as strong and courageous as we could be.
This advice may sound discouraging and depressing, but I hope it won't discourage or depress you. I hope that you will be able to find ways to feel good about the time remaining to you, and to communicate well with the people you care about.
I believe that lots of men and women on this forum will be thinking about you and will be very pleased to express warm wishes and to answer any questions that you have as best they can.
I wish you the best of luck and will be thinking of you.
My best regards,
Alan
Thank you Alan - very good advice . I remain positive and am blessed for every day. I am looking at options to extend time but will balance that with family.
Thank you Alan for your very sound advice. I too have liver enzyme numbers that have risen and may indicate liver involvement. CT scans today and appt. on this Friday to confirm. Docs stated months as a life span. I too remain positive and continue to be a strong example to my friends and family. Thank you for your honesty and wisdom
charlie
Well said, Alan...
Ask your doctor about the possibility of adding Carboplatin to your Taxotere chemo. It has shown good results with visceral mets. Here's someone in our group that had success with this treatment.
healthunlocked.com/advanced...
There is also something called SIR Spheres. It is radioembolization for the liver mets. Here's a basic description, but you can do a search and get more information.
cancercenter.com/treatments...
Thank you. When I asked before the carbo, my onc said my low blood levels couldn’t handle it but that was before liver intrusion. Thx
As you know, my husband has mets to liver.
I don't have much to add to Alan's post.
What I would say is that you can add Carbo Platin to the Chemo treatment. Carbo Platin works to destroy the tumors in liver and other organs.
However, they are hard to control and enjoying the time you have left and do treatment only to gain more time and not to look for a cure is I think the right attitude. I have never heard from anyone yet where the mets in the liver either went away completely or were stable for a very long time, even though I remember somebody here on the forum mentioning that he had them under control for nine months or so.
All the best
Mel.
How does SIR Spheres work?
Good Monday Morning Jackrow,
I was diagnosed with 20+ liver mets in September 2017 and immediately began Docetaxel/Carboplatin chemo. Gregg57 provided a link to my earlier post.
So far liver mets seem to be under control during my chemo break. Will have next liver MRI in 1 month. PSA is responding to a rechallenge with Xtandi after 6 cycles of chemo, as Xtandi had failed for me after 12 months in 2015-16.
We were given some grim statistics, which we asked for, after liver mets diagnosis, but I am not a statistic!
Do Google "Selective Internal Radiation-Spheres". It is done at Piedmont Hospital in Atlanta and my Med Onc has used it.
Best wishes. Never Give In.
Mark, Atlanta
Yes my husband too had Mets to his liver from prostate cancer .he also developed a large tumor on his jawline which was biopsy showed prostate cancer ..prostate cancer has a mind of its own to test us...
Hi Jackrow,
My husband was diagnosed in October 2015 with as his doctor said "more tumor than liver". He is G9, and his PSA was 1260. He had the doxetaxel/carboplatin combination right away. Since then, the tumors have shrunk and he is doing very well! He started Xtandi in December 2016. Honestly, I understand you must have the carboplatin if you have liver mets. He also has bone mets. He had a scan in January and it showed continued regression and no new mets. My husband has a genius for a doctor.
I just wanted to encourage you, since my husband is doing great and feels good!
Be proactive in this journey, your life depends on it.
Oh and yes, the Xtandi makes you tired, but be sure to take it at bedtime.
Take care.
Bettie
My husband does get nausea from Xtandi. He makes sure to eat something every few hours. It seems to help.
Thank you - will give it a try, my best to you & husband
You too.
Thank you. I’ve asked my oncologist and appreciate your help here. My best, Jack
I hadn't seen that video before. That and the experiences reported by some other forum members gives me hope that you may have more time ahead of you than I feared.
Good luck.
Alan
Thank you Alan. My onc indicated you must be off other treatments for the radiation beads. I can’t afford a chemo break - even when I’ve done radiation, the mets expanded elsewhere.
Also , my blood levels are so low, even carbo platinum may kill me so tough choices. ( even with transfusions)
Best Regards, jack
This is amazing, It seems many on this list could benefit from this radioemboliztion of liver mets. Thank You for sharing.
Dan
Hi Jackrow,
I am inclined to recommend some more fighting against the cancer cells:
1. First step read AKM Shamsuddin's text (he is a MD, Ph.D. at the U of MD medical school. He is a cancer researcher specializing in IP6 and has extensive experience consulting with Chinese physicians about treating liver cancer which is prevalent in China with IP6/phytate/phytic acid. You can find the book here:
amazon.com/IP6-Inositol-Nat...
2. IP6 Powder can be purchased from two companies and is distributed through several online suppliers. I have found allstarhealth.com to have the best prices. Dose: In you situation, if it were me I would take 8 scoops in the AM and 8 in the PM, always on an empty stomach in water (never mix with anything containing protein as the IP6 molecules will bind to protein molecules.
3. I would read Vaclav Vetvicka's "Beta Glucan: Nature's Secret". Beta Glucan is a natural immunomodulator. Go to vitawithimmunity.com for a short course in beta glucan and cancer. You will find an interview with Vetvicka. Dr Vetvicka is at the U. of Louisville medical school. He is, like Shamsuddin, a leading world-class researcher in his area of specialization. He is a Ph.D. biochemist from the Czech Republic. He has published more than 200 journal articles and 7 books. His book on beta glucan contains testimonials from patients using beta glucan. He also reports research on the most efficacious glucan: Transfer Points Beta 1.3-D glucan (#300).
I take all of the above and have found these books very helpful. I take other supplements. My diagnosis was in 2012 with stage 4 PCa. My Gleason score is 8. My last PSA 2 weeks ago was 0.06, the very same numbers I got 6 months ago. My initial treatment in AZ consisted of Casodex and Lupron. Here in Florida, my only treatment has been since fall 2016 Lupron.
Your happy vegan, CalBear74
I exhausted chemo and not a candidate for clinical trials. I am now in Palliative care.
Jack,
Sorry to hear about the complications, but as you can hear from the members here, there's plenty of road ahead of you. I second Alan's comments, not only for you, but for all the members. Having your estate taken care of has nothing to do with having cancer or not. It's just sound family planning. I also don't think you have anything to lose by finding out about the hospices. But the overarching message here is that you still have a couple of more tricks up your sleeve. Have you done any genetic testing?
Hi Jackrow.
As you may know from my other posts here, my husband has numerous mets to the liver. He is being treated with Carbo Platin Chemotherapy, one infusion every three weeks.
The therapy keeps the tumor growth in the liver under control, but doesn't reduce the tumors any more.
Radiation as mentioned here before is according to our oncologist possible but only when the tumors can be seen as single tumors. Often what happens with liver tumors is that they are small cell tumors that form a kind of a net on the liver rather than being single large tumors which you can radiate. Still, I would discuss this with your doctor.
We are not sure what our next step on this journey could be if Paul can no longer take the Chemo.
I have asked about radiation now anyway...
Best wishes to you.
Mel.
Thank you Mel, my best.
Hi Jack, I had PET/PSMA scan in Dec 2017 which showed multiple lesions in the liver. My MO put me on docetaxal immediately and it has got PSA down from 47 to 2 after 5 rounds.
I have asked about carboplatin - I told MO that it seems routine to add carboplatin to docetaxal when liver mets are detected. He said - not true. Well that's not quite right, cause there are a number of men here who receive carboplatin, but I can't write my own prescription... Anyway he is not gonna change his mind while Docetaxal continues to work.
I haven't tried Xtandi or Zytiga yet, though it's likely that they will be next after chemo stops working. Hopefully not soon.
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