So what do I do now?

[Miccoman]

Got through 4 docetaxel cycles. But by then I had:

Burnt out vein from 1st cycle

Sore tongue and mouth (since 1st cycle)

Difficulty thinking

Feet tender with balls of feet numb and heels too sore to wear shoes

Fingers numb to point where I couldn’t pick things up

Cramps in evening in hands and feet

Tearing

Passed out and then had bad EKG

QOL & spirits were pretty bad and I was not communicating well with my oncologist and his team. I never felt they were my team and social work was completely missing

My oncologist and his team’s approach to chemo was that they would support whatever I wanted to do during infusion but would supply no information or assistance, only ice. They just waited until there a problem side effect appeared and then tried to figure out something that might help.

So I stopped the chemo to heal and asked my oncologist to refer me to another practice where I might get along better. He said he would call my urologist and discuss. Then he called back to confirm he had talked to my urologist. I’ve heard nothing in weeks.

Urologist was upset that I was leaving oncologist as they are friends. Urologist also either had bad info or lied to me last time I saw him about testicular implants (he said they are not made, yet the web site lists a colleague in his same office as a rep).

So now my trusty and overworked PCP is trying to help. Just finished a couple of days with an eHolter and have an echocardiogram coming up. He is trying to find an oncologist as well.

Part of the problem is the University of Rochester Medical Center itself. URMC is set up in the old vertically integrated silo model where no one works much with anyone outside their discipline and each department seems to work against the others. Except Primary Care and Palliative Care.

URMC, again except Primary Care and Palliative Care, treats patients like children – I actually had a couple of nurses in oncology ask me if I had medical training because I used “all those medical terms” as if that was a problem. As an informed consumer of medical products and services I was treated like a truculent child and told, at one point not to worry about taking senna for 30 weeks as nothing would go wrong because I was “under the care of a doctor.” There was no discussion about my bowels, BTW.

Also you are NOT a patient of URMC, but rather of each independent department so you get to fill out pages and pages of electronic forms, one for each doctor and procedure before every visit (often filling out the exact same forms days in a row). Then all that information is reviewed by the nurse when you arrive. Sigh. At first I had 6 or 7 doctors at URMC. It is now 3.

So I am supposed to just curl up and die? The last choice my oncologist gave me was chemo or hospice. He also told me I had 1-2 years, as did his nurse. So why would I go back to chemo? My PCP says I need an oncologist.

I’ve just gotten through a hugely stressful time where I thought I was going to loose my house. I’m starting to heal from the chemo and the stress is much less but I’m feeling lost that there apparently are no oncologists in Rochester, NY, outside of URMC.

I mean, I’m not a difficult patient, except that I am informed. It's not like there are a plethora of treatment choices, so WTF?

If I have to I can travel. It's a couple of hours to Syracuse or Buffalo (I don't know if there's anything at Cornell in Ithaca). I do not have the means to do an overnight to NYC.

[tango65]

You could consult by video with Drs at the Memorial Sloan Kettering Cancer in NYC. My understanding is that Dr Morris does video consultations.

mskcc.org/cancer-care/docto...

Drs at the MSKCC may know oncologists in Rochester NY who could help with your care.

[TylexGP]

Hi Miccoman,

I would suggest Roswell Park cancer Institute in Buffalo. I have had friends from central NY that have gone there but can not provide personal experience.

[Aodh]

I’m so sorry to hear that you’ve been having such a bad time with treatment and medics.

I do hope that you can get some positive assistance in the near future. I can’t offer you any advice on that though as I live in Ireland and our medical system is very different, hopefully you can get some support from people nearer to you.

I’ll keep you in my thoughts.

Hugh

[Muffin2019]

I go to upstate cancer center here in syracuse and so far so good for almost 5 years, my oncologist and care team has been great. My oncologist has a plan fir me and feel I can trust him.

[Seasid]

You should stop Docetaxel chemotherapy. You already had 4 cycles and that is great. Dr Fred Saad recommended stopping docetaxel chemotherapy if you develop peripheral neuropathy. Unfortunately you shouldn't have more cycles at this point of time.

Please read from Dr Fred Saad:

urotoday.com/journal/everyd...

Maybe later you could have Jevtana. Even 4 cycles of Docetaxel are great. You could continue with enzalutamide. I didn't read your profile. István

[Miccoman in reply to Seasid]

Thanks Seasid. Unfortunately my last oncologist saw no reason to keep doing Xtandi so I am now on nothing until I can find another oncologist. Maybe when I'm feeling better I'll be able follow through with all the suggestions here.

[Seasid in reply to Miccoman]

What are your other biomarkers? PSA, ALP? Etc can you ask for a liquid biopsy? Do you have radiological progression? After chemotherapy Xtandi may work, or etc least you could try. Can you ask? Nubequa would be nice too.

[Miccoman in reply to Seasid]

on 5/4/22 my PSA was 11. After 4 cycles of docetaxel, on 7/19/22, it was 5.61.

Not familiar with ALP

I have no oncologist right now so I can't ask for anything

There has no significant progression shown on bone scans. Only modest progression in the last 8 years -- I presented in 2014 as stage 4 with extensive bone mets (although many of what they think are old mets are probably healed fractures from a very brutal childhood).

[MateoBeach]

Agree with Seasid: no more docetaxel when peripheral neuropathy arises. It could become much worse and permanent.Yes, you need to migrate to a better (such as Center of Excellence) cancer center with an MO you are happy with and trust.

A pause in further treatment while this is happening will be okay. I assume you are on ADT and not enzalutamide alone?

[Miccoman in reply to MateoBeach]

Thanks MateoBeach. No I am not on ADT. I had myself castrated to get away from Lupron and my last oncologist stopped Xtandi and did not see a reason to continue. The choice I had was docetaxel or hospice. And when I asked to be referred to another oncologist he was cordial and then... crickets.