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Hi everyone --

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

23 Replies

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  • Lynnette, I'm sorry I have no advice, but a huge hug is coming your way.

  • Thank you -- we will try again tomorrow for chemo hoping his numbers have improved.

  • 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.

  • Thanks again for your positivity !

  • Lynette,

    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

    Gus

  • Dear Gus:

    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.

    Lynnette

  • 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!

    Neal

  • Dear Neal-Snyder:

    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.

    Lynnette

  • Next month I'm doing what Motosue suggests, below.

  • You'll be in good hands. I have no regrets having Dr. Scholtz as my doctor. He told me he has a thousand patients. Good luck in your journey Neal!

  • Thanks for your comments & wishes! I feel like I'm finally going to get the advice I really need. I'm seeing him 4/11. Good luck in your journey, too!

    Neal

  • 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.

  • Very good advice and sentiments.I concur totally

  • I would Check with the Levine Cancer Center in Charlotte N.C. 980-442-2000. I do not know where you live---they are hooked into Tapur.org--where clinical trials are done at Levine--yet any drug in the world can be obtained by Tapur--for free. Money is not an issue now. Dr. Burgess at Levine runs the Prostate Research Group/Trials section. I was just with him recently--and was told they have a drug, that has just produced by some Drug company---and he has been getting, 80 % remissions in very late aggressive cancers--it is so new that I assume only the Places such as MD Anderson in Texas, and Duke, in N.C. or Sloan Memorial in N.Y, or John Hopkins in Maryland, are up to speed on any new development that has not hit the Medical Media as of yet.

    My suggestion is you may need to get your husband into a Clinical Trial, or get involved with experimental protocols, such as the one I heard about at Levine. Any of the ones I mentioned, should be able to assist. You could go to Clinical Trials.gov---but you need an expert Oncologist--involved in day to day Trial research to assist you here.

    There is hope, there is a God. Start calling these places---or you can go to The Prostate Cancer Research Institute----Get an Advocate--who can assist in a search for you. Sorry I do not have their number handy---you cannot take this on yourself---You need an advocate, or you need to go directly to the places above, that do a great job in Pca Research/trials---If you are west coast--UCLA Medical is another. Best wishes,

    Nalakrats

  • Hi Nalakrats,

    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.

  • This organization works with 4 Cancer Institutes---important thing is to get into contact and consult with one of the groups I mentioned---and get an advocate at Prostate Cancer Research Institute---they can lead you---you can find their number at their site---call for help and info.

    Nalakrats

  • 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.

    Lynnette

  • My brother was like that: Had the same nasty Cancer I do---His wife had to do all the leg work. He does not want to talk about it with me---we are both undetectable---mine thru Supplements and Drugs, after surgery and my brother from radiation after surgery.

    Some men are in denial, about the fact they have cancer. My surgeon, looked at me and said I was the type that would go out living life to the full, and not try to treat my cancer. He was dead wrong---I am at war with it. I am not in denial, I am not angry, i have gone past acceptance---to the war room, which consists of all my research work, my team of Doctors, my Advocates, this site and others, and my scientifically trained brain. And not to leave out the most important--but to savor for last---My God and Prayer.

    Most Doctors do not tell me what they are going to do. They ask me what I would like to do. They will have menu for me maybe later on, as I am stable for the time being---but I will make any choices.

    So I understand your situation---many times the wife has to be the locomotive, that drives the train, Prayers be with you. John Hopkins is great.

    Nalakrats

  • Lynnette, sorry to hear about your husband's situation, all I can say is keep the faith and don't ever give up.

    j-o-h-n Friday, 03/17/2017 2:23 PM EST

  • Scary cituation.Lucky to have you..God bless you!

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