Has Anyone Heard of Any Alternatives To PC in Marrow?

[Sapmiami]

I know its not cureable but is it treatable? Looking for alternatives. A hospitalist came in and said my husband needs hospice . His blood is up and down, needs transfusions frequently . He seems Like he is not in much pain and is healthy not end of life at all. Any advice is appreciated!

[Hidden]

Please tell us his treatment history so we can better help you.

[Sapmiami in reply to Hidden]

Dx as stage 4 metatastic ( all over) adv pc in Oct 2017, first zytiga , pred lupron. 12 months later stopped working , jevtana, then radium 223, then doxytaxel, broke femur, gor bone marrow biopsy, 5 weeks in hospital with 10 transfusions . No soft tissue involvement yet

[Hidden in reply to Sapmiami]

From what you have said, I believe that hospice would be the best care at this time. If something becomes available, he could go off and seek treatment. I'm sorry to say this and really wishing the best for him and you.

[Sapmiami in reply to Hidden]

Thank you for your reply

[Hidden]

Sorry , I don’t have any advice ..only sympathy and love for you both. This APC is a brutal foe... our wife’s or partners suffer much . Take care and be kind to yourself on this rough sea.. You are there for him.. Not too much pain is a blessing. Bless you being by his side🙏Thank you

[Sapmiami in reply to Hidden]

Thank you for your kind words

[Hidden in reply to Sapmiami]

God bless🙏

[Hex40]

There is a wife on this site whose husband is in a similar situation with marrow involvement. A search should find it for you.

[Sapmiami in reply to Hex40]

I tried using search word bone marrow and could not find it . If you see it again let me know. Thank you

[Hex40 in reply to Sapmiami]

Look up user id joekaty.

[BigM62]

One thing to consider is that hospice can and should be used way before end of life. They are the comfort specialists and can help keep everyone moving, enjoying, and as normal as possible.

[BerkshireBear]

My experience with hospitalists is quite a bit below stellar. Although I have not been hospitalized for PCa, I have had other cancers and cryptogenic diseases that have put me there several times recently. With one or two exceptions I found them to be generalists working for the hospital and not the patient. Typically I felt they were imposing themselves between me an the expertise of my doctors and specialists. I felt they were reading from a script rather than seeing me as an individual who might not follow their "standard practice" script.

Your statements describe your husband's situation as serious -- at the point of needing the best opinions and expertise that is available. I would suggest you seek guidance from an expert in prostate cancer from outside his current hospital and practices. The expert's opinion may echo the hospitalist, or you could learn of some alternatives. Either way you should find more comfort in choosing the path forward.

[Zetabow]

It's a problem I have. At diagnosis last Nov my only symptom was pain in legs a fatigue and a PSA of 1386, when they did a PET scan I was lit up like an Xmas tree everywhere and it had got into the Marrow on both Femurs. I started off on combined Chemo and ADT and regular blood transfusions plus certain drugs to promoted White blood cell production. They managed to get me stable but terrible pain in my legs. I had an MRI last week and hope a RO can find some spots to help relieve the pain. I'm very self conscious about walking, I have a feeling it wouldn't take much to break a bone. We have very cold winters with snow-ice everywhere.

[Hidden in reply to Zetabow]

If we could just retreat to a tropical climate for a month or two each year? The cold is contra feeling good..

[Sapmiami]

I am so sorry you are going through this as well. They should have you on a bone stregthener like Zometa. Be very careful walking. Thats why mine is in hospital. Mine is supposed to get pallitive radiation on femurs now and shoulders. He is really not in much pain now. Thank you for your response abd good luck

[Hidden in reply to Sapmiami]

We walk on rice paper with APC treatments..

[DSEE]

My husband is currently in Hospice and they are wonderful .

His hemoglobin was constantly down and he had many blood transfusions prior to agreeing to take on Hospice care at home.

[Hidden in reply to DSEE]

🙏

[MateoBeach]

Perhaps home hospice is an option? So he can benefit from the support and comfort and advanced pain management without leaving home. And that would not preclude other possibly beneficial treatment options that might be considered. Hospice should be a refuge.

[Sapmiami in reply to MateoBeach]

I think that would be his choice if he could not get more transfusions. Thank

You

[j-o-h-n]

Remember (it's so easy to forget) that God is on your side....Bless you all...

j-o-h-n Sunday 12/15/2019 7:10 PM EST

[joekaty]

My husband was diagnosed with extensive bone marrow metastasis in August 2017 and he’s still here! He was in DIC (disseminated intravascular coagulation) so he was hospitalized, in ICU, required extensive blood, plasma, and platelet infusions. He received his first infusion of chemo while in ICU, and against all odds he made it! If he still has a good quality of life and wants to keep fighting then don’t let them give up on him. I had to really fight for them to aggressively treat Joe at diagnosis and if we had gone along with them he most definitely would not have survived- but now we had had almost 2 and a half more precious years with him here. Please feel free to private message me for more info or advice! Best wishes!!!! Katy

[Sapmiami in reply to joekaty]

Thank you! I will message you

[greatjohn]

Wishing you all the best. I'm also in South Florida. What hospital/doctor is he with? I live in Ft. Lauderdale...but use University of Miami.

gJohn

[Sapmiami in reply to greatjohn]

Who do you use? We use Dr Negret

[greatjohn in reply to Sapmiami]

I was seeing Dr. Sengal (Oncologist) at U of M when he works out of the Deerfield Beach Campus....but I have recently (my next visit will be my first official visit) switched over to Dr. Sharma .

Dr. Sengal was a 50 something year old Man who seemed like he wasn't in the same room with me (the patient) only looking at the computer screen and making a few comments.

Dr. Sharma is 30 something year old Female...who spends a good deal of time actually looking AT ME...and talking TO ME. I was seeing her as a substitute for Dr. Sengal for a few months(while he was out on a sabbatical in India) and realized I wanted to stick with her.

I'm sure Dr. Sengal is very good...but I just wanted more of a "human" approach. She (in her regular practice ) only sees patients at the U of M Sylvester Campus....in downtown Miami...which is a night mare to drive to from North Ft Lauderdale. I'm hoping it's worth the 1 - 2 hour drive each way.

The "Big" campus is very big...but runs like a well-oiled machine from my dealings with it so far....I've had H.I.F.U there...my first urologist visits were there....(now I see him in Deerfield) and I've had a few tests done at their testing facility. I'm going to be sticking with Deerfield for most of my testing (when it's possible).

All the Best.

John

[Sapmiami in reply to greatjohn]

I am going to refer some friends from Ft Laud to her then. Dr Negret is around 35-40. He thinks outside the box. We go to Lennar which is in S Miami. My husbands case is stage 4, apc. No removal of tumor. Mets everywhere from dx in Oct 2017. We went to another Dr in Miami and felt he was not on the ball and could care less. Everything was “ we will just see you to talk to you in 3 months for the next Lupron shot ( this was when my husband had anaphylactic shock during the administration of Doxytaxel . So we changed to UM .

[greatjohn in reply to Sapmiami]

You have to reread perhaps...she only sees patients at the big downtown campus...I met her when she was taking Dr. Sengal's patients in Deerfield while I was with him.

There are so many new trials and studies...I'll be hoping for the best for your husband ....

btw..I went from Gleason 6 to stage 4 aggressive castrate resistant overnight it seemed. Diagnosis at age 57...radiation(it was suppose to fix everything) ...psa never went below 2. 0

Then hifu...

Then stage 4 . Lupron,Chemo, Provenge, then declared castrate resistant.18 months ago added Xtandi..12 months ago added Xgeva.

Turning 63 next month. So far just a few local Mets in pelvic area and a few nearby lymph nodes.

Six years on the journey 😊

[Sapmiami in reply to greatjohn]

Wonderful.

[Sapmiami in reply to greatjohn]

University of Miami. We go to him at The Lennar Center

[Sapmiami]

Has anyone tried Bipolar Adrogen Therapy ?