My name is Lynnette. My husband Doug is currently 70 and had a radical prostatectomy in 2006 with radiation and hormone therapy following surgery. In November 2016, we found out that his cancer had returned and had metastasized to his bones with multiple tumors throughout his spine, hips, femur, shoulder and ribs. He followed up with chemo for six months and continued with monthly lupron and zometa treatments. In January 2017 his liver enzymes had tripled so they performed a liver biopsy and he was diagnosed with small cell liver cancer. He is currently having chemo treatments with carboplatin and etoposide for six cycles every three weeks. He was supposed to start his third cycle this past Monday but his white blood count was only 600 so we will try again next week to see if he can reach the magic 1,000 mark they are looking for to have the treatment. The liver tumors have responded to the chemo shrinking them slightly but his oncologist told us that with small cell cancer the chemo is just to slow down the progression and that my husband had approximately a year to live. Has anyone here had any experience with a similar situation that I can ask questions. I have a lot of anxiety about time passing too quickly and need a little hope to hold onto. Thank you very much for any experience, thoughts or suggestions you may have.
Sincerely,
Lynnette
Written by
sweetudog
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You have my prayers and support. Small cell is a hard diagnoses. The one thing I will say is that this sight is full of members that have outlived their diagnoses. While the outlook may not be good, it is not set in stone.
Could you ask your husband's cancer team if there are any hospitals that are experts with small cell?
Please know that while I do not have an answer for you, you and your husband are in my thoughts and prayers. If you are up to it, please keep the group informed on how he (and you) are doing. You never know when something you write about would trigger a response with advice.
Was Doug getting regular PSA tests....as to the liver cancer look into clinical trials with the new immune agents...a lot of terminal cancers have gone into remission
Yes, he was getting regular PSA tests done -- we were at the watch and wait period. We switched our focus in February 2014 when he had open heart surgery and on his next PSA test his numbers were rising and it has continued from there. We will keep our fingers crossed that his chemo will go as planned tomorrow.
My prostate cancer spread to my liver, and while the first biopsy result looked just like "garden variety" prostate cancer under the microscope, further tests indicated it was 20% small cell. Since my PSA was also jumping, and nearly 5000, we decided to try bipolar androgen therapy ( massive testosterone once a month while staying on Lupron. Initial indications are that the liver tumors are healing, my PSA has dropped to 2530 after 2 months and lymph tumors are smaller. In other words, there may be hope. Good luck.
Wow! unbelievable!Bi-polar ADT .Didnt know that it existed.What happens with moods under that treatment? Hopefully it Melts those away or you..Mad chemistry projects that we have going on inside us..-Hope springs eternal.
I haven't had mood problems with any treatments to date. I'm 2 weeks into my third month of BAT and my tumors in lymph seem smaller to touch. I will have scans in about 10 more days, so will know more then. Biggest problem so far is that it has caused some more frequent urination.
Lynette, you were smart to ask on this site, & you've received some valuable answers. All I can add is that doctors are extremely conservative when they predict survival time. I had 2 oncologists in the middle of the last decade who said I had a year to live, & others who gave me up to 5 years. And I'm still nowhere near death, & enjoying my life tremendously.
I hope you'll be able to pull off something like what Gecrellin did, or that you can locate top experts in small cell who may have other valuable approaches. I hope Doug has a remission. But actively seeking an agressive, potentially dramatic intervention now is probably your best bet, if you can pull it off. Best of luck!
Dr. told us if chemo fails he would look into a clinical trial. At this point, we are just trying to keep him healthy enough to have chemo. We are keeping fingers crossed that tomorrow's treatment goes on as planned. I understand it is not uncommon for treatments to be put off a week for numbers to improve but was not aware of it before so I thank everyone for giving me guidance.
I would see , Dr Scholtz, from Marina Del rey in the Los Angeles area for a second opinion. If your doctors ask you why you are going to see Dr. Sholtz, just tell tell them that you want to get a second opinion. I don't think that they'll be upset cause they can't cure you (a doctor told me that) and they told you that you got only one year. Let me know if you want his number. When I got diagnosed, I got about 6 "second opinions" from the top hospitals in the nation. I was stage 4 when diagnosed. Dr.Charles Myers is good but he'll retire in Nov., someone on this site said. A lot of us here is in the same boat as your husband - we want to keep ourselves going as long as possible so that we can still be around when some smart researcher finds a magic bullet to cure us or keep us going comfortably and we go from something other than our prostate cancer. I want to wish you the best health possible . Remember, you and your husband have to be or are your best advocate in figuring how to fight this. Both of you can do it . Take care.
Wow, so interesting to find out what this new drug is. Did they finish the Clinical Trials for it ? I hope so. Please keep this forum informed when you hear about it again please. I'll check out Tapur.org to see what it's about. Thanks for the name.
You are so up to speed on new drugs and information. Thanks.
Thank you Nalakrats -- we are located an hour outside of Baltimore so doctor has indicated that if chemo fails that he would look into a clinical trial at Johns Hopkins. I leave the decisions up to Doug as it is his journey and I am trying to keep him motivated and informed as he does not take an active part in researching or even wanting to know what is happening to him. I will keep looking into options.
Hi, Lynette. I haven't any specific information to pass on to you and your husband except my thoughts and good wishes which are surely inadequate to the task but are nonetheless offered in faith.
Prostate cancer which spreads to the liver results in smaller leision than when the cancer comes from colon I am not sure if you are referring to PC spread to liver or Liver Cancer. If it is PC spread to liver which is what I have. I can tell you that I am on ADT and Chemo using both Doxetaxel and Carboplatin. I have been on that combo for a year I expect to continue with that protocol for as long as it controls the cancer. Best wishes
Diagnosed in November 2016. Started Chemo a month after. My treatment seems to be the standard at MSK Will try experimental treatment if the treatment no longer works
Just I you can. continue to make some right decision for your husband and very best wishes.
I am only to talk about PCa as my recent discovery and assessment think it is related to bacteria infection which when our body could not cope it results in PCa.
I am putting my live on the line to put it mildly.
Again wish your husband can continue to battle this fight and come out on top.
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