Hey lucky me - I now have 2 cancers

[swwags]

I wrote about this 2 months ago and things have changed so I'm re-writing my post:

It's important to note I skipped my May Lupron injection.

8/30 Mayo C11 Choline Pet scan:

1. New choline avid marrow occupying lesion in the mid right humerus likely represents metastaticdisease. Additional focus of choline uptake in the sternum near the sternomanubrial joint is more prominent on prior exam and is also worrisome for metastasis.

2. A right internal mammary lymph node has increased in size with low level choline uptake in aupper mediastinal lymph node is newly choline avid. While these may be reactive, given the priordisease in the chest, findings are worrisome for metastasis.

Testosterone which had been <7 since 2020 now read 11.

Dr. suggested take Lupron and rescan in December. On the drive home, I decide I don't want to wait.

9/2 Lupron injection @ MN Oncology

9/2 Testosterone 8.4 - can't explain the drop in testosterone from 11 to 8.4 but will take it.

Oncologist/Hemotologist takes a different approach at my request. He wanted a biopsy.

Humerous lesion Biopsy reveals Plasmacytoma. Second bone marrow biopsy confirms Dx.

10/10 Met with Radiology Oncologist - ordered FDG scan.

10/11 FDG Confirms Humerous lesion and large tumor in right scapula. I am undergoing radiation treatment in the next two weeks. FDG scan shows lesions in only those two locations and indicates both are Plasmacytoma.

Radiology Oncologist isn't convinced that the sternum (SUV max 1.6) is concerning yet and lymph nodes are too small for anything actionable. I agree.

He suggests to proceed with next C11 Choline scan on 12/5, then return to him for PSMA scan. Should be around mid December to late December. I agree.

Ok action taken on Plasmacytoma.

10/28 - Oncologist visit again. He reviews findings and is on board with tx of plasmacytoma.

Regarding PCA - I tell him my body feels different as I'm not having hot flashes anymore, voice is lowering again, hair thinning again. I wondered out loud if I got a a bad batch of Lupron. He didn't think so but no way to know so he orders another testosterone test and PSA. He also orders Erleada as he thinks I may be castrate resistant but not certain.

10/28 lab results - PSA remains undetectable. Testosterone is back <7. Free Testosterone noted as "low".

I asked for a referral for Orchiectomy consult - still waiting on a call from them.

Open thoughts at this point - the Erleada may be free to me as I have applied for a grant. I'm not sure I need it as it appears Lupron is doing it's job, but another tool in the tool box.

Taking two different ADT is concerning to me, hence the consult on the orchiectomy.

I'm still happy to be alive and now know more doctors than I have friends

As always, I appreciate your wise words, input and the occasional insult

[treedown]

That's a lot on your plate. Still your humor shows through. Hoping it all works out for you.

[swwags in reply to treedown]

Thank you

[Tall_Allen]

Ugh. As if one weren't too much.

[swwags in reply to Tall_Allen]

agreed, but will get by or die trying

[Hidden]

I did Lupron & Tak-700 (similar to zytiga ) for 18 months . I was told “ shots for life” Then an orchiectomy 2017 allowed me to drop the lupron shots . I stayed on the Tak for seven yrs clear . I stopped it six months ago .. . The orch was right for me . Although I’ll never see T again unless I inject it! Ive had just 3T for the entire time . My last MO told me that lack of t doesn’t shorten life ? I’m not sure? . We do our best to survive . Good luck 🙏✌️

[swwags in reply to Hidden]

Thanks my friend. As I understand it, Tak-700 never made it to market but you were in the trial and I'm really happy for you.

[Hidden in reply to swwags]

Good day ! correct swags! I Think it was a small trial ..They say that It failed to promote life ..? it helped me and a very few other guys get down this bumpy road a bit . Now im off of all adt for the first time in yrs . I don’t really fell any better being off adt for I have no t to recover . Just grateful for living . Take care

[Stephen399b]

Dear swaggs - there are a few of us about!

I was diagnosed with Essential Thrombocythemis (a blood cancer) in 2016 and the PC with metastycese in about 6 places last year.

I'm still here. Medication for each has to be balanced and my haematologist talks to my oncologist. Platelets are at correct level and PSA unmeasurable after going on Abiraterone etc.

Keep going and enjoy life. A propos the previous posting on diet - I'm not giving up chocolate

[swwags in reply to Stephen399b]

I'm glad that my hematologist and Oncologist are the same Dr. So he can talk to himself

I'm not quitting chocolate either. Thank you for the encouragement and support

[Hidden]

BE brave. Keep laughing at anything you can. Hoping for the best for you.

[swwags in reply to Hidden]

Thank you

[Bvilkid]

More doctors than friends 🤣😂

Hang in there ol’ buddy. We’ve got your back. 🙏

[swwags in reply to Bvilkid]

Thank you

[spencoid2]

I think I would recommend orchiectomy. Mine did not last too long as I became castrate resistant less than 6 months after orchy but I do not regret it. In your case with two different drugs and un certain results it makes sense to me to go right to the balls. The only downside is that you will not ever have a natural source of testosterone so if you are "cured" and want it back it will need to be a supplement. After I am off aberaterone for s a while I wonder if I get to try some testosterone again. Would be interesting to get some libido back

[swwags in reply to spencoid2]

libido may come back but way too much nerve damage from the prostatectomy. My little buddy is broken and so we find other ways. We're both good with that.

[spencoid2 in reply to swwags]

Flexibility is a great skill when you need to flex

[Gabby643]

keep up the good fight.

[swwags in reply to Gabby643]

Thank you

[lakeheadguy]

Ask about Radiation Proctitis

[lakeheadguy]

My radiation consisted of 35 external beam treatments and hormone injection at begining and mid treatment. Note radiation proctitis can be immediate OR appears 5 to 10 years post tretament. Mine was 6 years post treatment. Proctitis is incureable and there exists no permanent treatment. The odour is unbreathable. Sitz baths work temporarily. Radiation proctitis refers to permanent injury or permanent damage of the rectum secondary to radiation therapy. It is postulated that almost half of all patients with pelvic malignancies undergo treatment that involves radiation.

Sucralfate suspension enemas provide a viable treatment option in patients who are intolerant of, refractory to, or not candidates for standard therapy for radiation-induced proctitis. Covid shortage of suspension ingredient. Only 1 use approximately weeks.

[swwags in reply to lakeheadguy]

I'm sorry for what you're going through. Man that is tough