Very concerned about treatment!

Hello All.

I following is a time line of what has happened in less than one year:

1. Diagnosed with PC 08/03/18

2. Diagnosed with MPC on 08/10 18. Started Lupron injections. Mets in skeleton, and pelvic lymphnodes.

3. Late August, diagnosed with deep vein thrombosis. Put on Xarelto.

4. Mid September 2018, starts Zometa, zytiga, and prednisone.

5. Early December 2018, scans show mets in liver. They biopsied the liver and said it was the normal prostate cancer. (I can't remember the name.) Also, lymphnodes in pelvic area are compressing the flow of urine from kidney to bladder. Two stints are inserted to save the kidney. Stop zytiga and prednisone and start taxotere. 6 rounds.

6. Last taxotere on april 29th. Scans in early May show liver is clear. Chemo took care of cancer in liver.

7. On 7/15/19, scans show cancer back in liver, active cancer in bones, and pelvic lymphnodes are enlarged! PSA .3.

8. 7/20/19, start jevtana chemo. On this day, psa, .5.

9. Since july 1st, 2019, experiencing breathing issues.

10. Call onco office on 7/26/19 and describe breathing issue. Told to go to ER. Chest CT Scan indicates blood clots in lungs and a mass that is 2" x 1". Get admitted to hospital. Put on IV Haparin. Then, injectable Lovenox.

11. Will have second round of jevtana on 8/9/19. Will be scanned two weeks later - 8/23/19. Onco said if chemo not working, he will start Keytruda.

I am having a hard time processing all of this...

Are we on the right track???... Everything is going so fast! Seems to be one problem after the next!!! We are catching no breaks!!! The cancer is just causing one health issue after the next. Any suggestions???

Also, so far, the onco doesn't think it is small cell. I think if we have to move to Keytruda, he will biopsy the new mass in the lung. TIA!

[Tall_Allen]

I think both a biopsy with an IHC analysis, and send it to Foundation One for a full genomic analysis. There is no point in having Keytruda if it does not have PD-L1 or MSI-hi/dMMR. It may point you toward carboplatin or a PARP inhibitor.

[Drphil1938 in reply to Tall_Allen]

Listen to TA, take his suggestions to your doc. I think he is correct.🤠

[Hidden]

MiHombre, Anyways I don’t have medical advice ,just to keep on swinging at it. You’ve really been knocked around . Yet your mind is still in tact.. and your spirit seems strong.. Are you doing any good things for yourself ,like diet ... ? I pray that you get a break and can find a fix .... APC is a real MF once it gets rolling on us . Keep your faith in what you believe .. 🙏I had nephrostimy tubes for over a yr,then stints for another 9 months ,changing them out every three... I know that misery well . God Bless You .

[ucladany]

You are in my prayers my Brother. I am not knowledgeable on the medical issues that you are having, so I can't comment on your treatment. Hang tough, you will get through this.

[Break60]

Bad luck! Listen to TA and Godspeed!

[AlanMeyer]

I've thought a lot about how to reply to this posting. The two of you are in a terrible spot and I want very much to try to help, but I don't want to give you false hopes on the one side, or despair on the other.

The cancer appears to be aggressive and developing quickly. It looks to me like the doctors have been trying their best to control it and they have slowed it down somewhat but it has become resistant to the standard treatments, only the newest, most experimental treatments appear to be left. Keytruda is one of those. It's a long shot that has not been helpful to most prostate cancer patients who have tried it and, as Tall_Allen said, a genetic test should be tried which may rule it out but, even if it doesn't, won't prove that it will work. Other long shots that may help are one of the new, experimental radionuclide treatments such as Lu-177 or Ac-225 bonded to a PSMA antibody, or maybe even the new ADT treatment darolutamide - though I think that one, so far, has only been clearly demonstrated to help non-metastatic patients.

Is it worth the trouble, expense, time, and side effects to try the new treatments? I don't know. It might be. For a small percentage of patients, results can be fantastic. Jimmy Carter's melanoma was put into complete remission by Keytruda. A very small percentage of Lu-177 patients have seen almost all of their tumors greatly regress or even disappear. The genetic test may say whether Keytruda is at least possible, and a PSMA scan may do the same for the radionuclide therapies. You'll need a good oncologist to advise you on how to get the testing done and whether the results indicate that treatments are worth trying.

It looks like the cancer is going to continue to advance and the new treatments are most likely to be of limited help - just as the standard treatments have been of limited help. Even while looking into these new treatments, I think it is a good idea to prepare for an end of treatment.

There will be some time left. This can be good time. I don't think it has to be filled with pain and fear. Maybe it can be filled with love and appreciation of life. Many loved ones will continue after us. We can leave mementos for them. If there are children, this is especially important. Perhaps the patient would like to write down his thoughts and his memories. Perhaps some photos and videos can be made or gathered together. I think that photos of families together are particularly valuable to those who live after us.

I think it helps us to remember that life will go on even after we are gone. Our parents and their parents and so on helped to create and sustain our lives, and we help to create and sustain the lives of others. We are part of a great chain of humanity that extends back and forward for thousands of generations. That chain continues after us and our contribution will always be part of it.

Practical planning is also important. Be prepared for possible pain and debility with contacts with good cancer pain doctors and with the various palliation and hospice options - including home hospice care. Think about the disposition of financial assets, and about powers of attorney for both financial and medical purposes. Think about what you want and make your wishes known.

We all have limited lives. We learned that when we were young and now we are learning more about the reality of what has sometimes been just an abstraction for us. However I firmly believe that every day and every hour at the end of our lives can be just as meaningful, just as purposeful, and even just as enjoyable, as the hours we spent in childhood and in the prime of our lives. Let's be sure that we don't spend our last hours in pain and fear. Let's spend them as WE choose, for our benefit and for the benefit of those who come after us.

I wish you both the very best.

Alan

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

Now that's a great post. BTW as you may have seen that I too am fighting a Melanoma (Lung) with Keytruda and so far it's working. Thanks again for the post.

Good Luck, Good Health and Good Humor.

j-o-h-n Friday 08/02/2019 6:12 PM DST

[JoelT]

Since you seemed to respond to the 6 rounds of chemo with taxotere why is the doc not going back to fax onsteasd of jevtana?