No longer prostate cancer

[DenDoc]

My history is in the profile. After 20 years since my diagnosis, I have learned that my cancer, now in the pleura around my left lung has mutated to a neuroendocrine or small cell cancer. This explains why I failed to get benefit from Provenge or Enzalutamide. The rapid change occurred since August when a PET scan showed the growth of tumors in my mediastinum and left pleural space.

They have now become very aggressive and are producing fluid rapidly. I have had 3 liters removed and there is more left.

Met with my oncologist yesterday. We will start a series of infusions of Carboplatin and etoposide every 3 weeks to see if this will slow the process. I will also get an indwelling catheter to remove the pleural effusions so I can breathe.

It has been hard to accept both for me and for my family since I am feeling so good and remain very active. But, alas, the cancer has the upper hand for now so we will give this a shot and keep an eye on my quality of life. My physician daughter was able to join my wife and I for the conversation and it was enormously helpful.

Awaiting results of tissue sent to Foundation One at Harvard for genetic testing but not much hope for a directed treatment.

I am so grateful for comprehensive coverage at Kaiser and a warm, wonderful compassionate oncologist who can even shed a tear with a stressed family. It is a new day and a new chapter in my book of life.

[TNCanuck]

Wishing you successful treatment.

[JamesAtlanta]

Praying for a great response to your treatment!

Thank you for sharing your story with us. You clearly have a loving family supporting you. And so nice to hear about how caring your physician is. Please keep us posted.

James

[Tall_Allen]

I'm sorry to hear about the small cell prostate cancer, and the discomfort you are experiencing from the fluid build up. Because there is still normal (acinar adenocarcinoma) mixed in with the small cell, they sometimes give docetaxel along with the platin anyway. You are right that the personalized treatment choices are very limited for any kind of prostate cancer. They are pretty much limited to Keytruda if there's evidence of MSH-MMR defect, and PARP inhibitors or platins for DNA repair defects. But you are getting a platin anyway, and it's not at all clear that a PARP inhibitor works any better than a platin. I wish we were more advanced in our therapies for neuroendocrine versions of prostate cancer and personalized solutions for prostate cancer. It sounds like you are getting good care.

Here are some clinical trials for small cell prostate cancer that you may want to investigate. I don't know if Kaiser allows it, but you can discuss with your oncologist:

pcnrv.blogspot.com/2016/12/...

[DenDoc in reply to Tall_Allen]

Thanks. Will keep the reference for another discussion with my oncologist. Bob

[BigRich]

I hope, your treatment buys you many more years of quality life. I will pray for you.

Rich

[DenDoc in reply to BigRich]

Thanks, it appears we are talking months, not years. Immediate goal is to attend a grandsons college graduation in May.

[Hidden in reply to DenDoc]

You will be there!

[DenDoc]

Thanks Joel. Will see what is left and discuss.

[MrsEricE]

Not being able to breathe really stinks! I will keep you in my heart as I listen for Pomp and Circumstance to be playing for your grandson, and you!

[Hidden]

20 yrs ! That is amazing to us beginning the voyage. My friends son is a top dog at kaiser. He s a great man and I like Kaiser. More importantly you like the doctor,.. very nice.. Dr daughter .. you have a lot to live for. Hope test are in your favor .. and that you can gain the upper hand once again.

[DenDoc in reply to Hidden]

Thanks. My oncologist suggested that every day you should find something to be thankful for. No problem. I was one of the original Kaiser Pediatricians when they started in Denver in the early 70's. My daughter is now a Kaiser Pediatrician in the same area I practiced in. Despite the cancer I do find much to celebrate in my life. She (daughter) also suggested that we look in to downsizing two years ago while we were able. We sold our house and are living in a 55+ apartment community so my wife can manage our few possessions when my time comes.

[Hidden in reply to DenDoc]

Be thankful everyday! Thank God!

[Attitude67]

Thanks for posting about these developments. Thank God there are a few treatment alternatives left and that you have the strength to pursue them. Kaiser is an excellent provider when you have enough knowledge about the system to use it properly. I’m glad your daughter is able to help guide your care. Are you aware of fig.1, a place where you can share specific aspects of your case with physicians and specialists from all over the world? It was founded by a Kaiser physician, a Harvard, MIT, grad, a gastroenterologist, in order to assist fellow practioners to seek help in solving complicated and unusual cases from all practice aspects. It is only accessible to members of the medical community and now has thousands of contributors from all over the world. Aspects of your case sound interesting and I encourage you to reach out and share.

[j-o-h-n]

From a layperson.

Whenever I see that lungs are involved I try to describe my so called temporary success using Keytruda.

Treatment with KEYTRUDA began 02/07/2017 (every 3 weeks @ $30K per treatment)

** After 2 treatments **

Lungs: Decreased lower lobe metastasis:

Now 1.2 x 1.0 cm. previously 2.4 x 2.2 cm.

Pleura/pericardium: Resolved small left pleural effusion.

** After 5 more treatments **

Lungs: Decreased left lower lobe metastasis:

Measuring now 0.6 x 0.6 cm. previously 1.2 x 1.0 cm.

No new suspicious lung nodules.

Pleura/pericardium: No effusion.

** After 5 more treatments **

Dr. said that my recent C.T. scan showed that the nodule on my left lung stayed the same size and that was a good sign.

** After 3 more treatments **

LUNGS/AIRWAYS: Further decreased residual ill-defined left lower lobe metastasis, barely perceptible. No new suspicious nodules.

Last Treatment 01/10/2018

Note: Schedule for a CT Scan on 04/24/2018 and a consultation with Dr. on Tuesday, 05/01/2018.

No side effects from treatments.

Good Luck and Good Health.

j-o-h-n Sunday 03/11/2018 3:16 PM EDT

[DenDoc in reply to j-o-h-n]

John,

Thanks. This is encouraging. Just to be clear, is your primary prostate or lung? Is your pathology Neuroendocrine/Small Cell?

Kids are my youngest and last grandchildren. They are 10 minutes away. A true joy!❤️

[Hidden in reply to j-o-h-n]

$ 450 k , who pays?

[j-o-h-n in reply to Hidden]

Private medical coverage and Medicare.... Thank GOD!!!

I told my wife to kill me and take the money.... (she is, little by little)

Good Luck and Good Health.

j-o-h-n Monday 03/12/2018 2:02 PM EDT

[Hidden in reply to j-o-h-n]

Hahahaha!!! I tell mine what money?

[j-o-h-n]

P.S.

Cute Kids.

Good Luck and Good Health.

j-o-h-n Sunday 03/11/2018 3:18 PM EDT

[j-o-h-n]

Primary is Pca. As far as your question "pathology Neuroendocrine/Small Cell?"

As a lay person I can only say it's a Melanoma. I don't know if that answers your question.

BTW I'm being treated at Memorial Sloan Kettering Cancer Center in NYC.

You're so Blessed to have such great looking grand kids (enjoy them/spoil them).

Good Luck and Good Health.

j-o-h-n Sunday 03/11/2018 3:50 PM EDT

[DenDoc in reply to j-o-h-n]

That makes sense. Keytruda works for melanoma, not used in prostate.

Glad you are responding. You and Jimmie Carter!

[j-o-h-n]

You mean me and BILLY BEER! LOL

Good Luck and Good Health.

j-o-h-n Sunday 03/11/2018 6:31 PM EDT

[MelaniePaul]

Hi there Dendoc.

Oh I am so sorry to hear of this progression of your illness. I hope that the new treatments will work well for you.

Best wishes

Mel.

[George71]

DenDoc,

I have read where keytruda and /or Optiva work in Pca when the mutations are present (braca 1 -2 Pdl 1 - 2 etc) . --- also -- why not radiation to lung lesions -- even remove the lobe like is commonly done for other types of lung cancer?