I've been doing self injections for years. Before PCa, I did intramuscular injections in the thigh and I hated them. I had to stop for about a year during my PCa treatment. When I resumed, I switched...
For me, a promising post-op pathology and good early PSA tests greatly reduced the worry. And then, the diagnosis of a second and must more dangerous cancer, eliminated my PCA concerns. I just had my...
I chose surgery, and 3+ years later, I still don't know if it was the right choice. For me, there were two major considerations beyond beating the disease. At the time, I assumed that both surgery...
Hero, I'd love to trade places with you and see if you still stand by your statements. After RALP, and now three open abdominal surgeries for dedifferentiated liposarcoma, I take oxycodone daily. We...
I use dexamethasone through parts of my gem/tax cycle. I start the day before, using 8mg in tablets plus some dex eye drops. I stay there for 3 days, and then taper down to 4mg for a couple days....
TA, The mistake was made at UVM. The scans they were comparing were from MSKCC and they grabbed the wrong films. I had scans from early November, late January and early April, and we needed to...
I post periodically about my ongoing fight with liposarcoma. I am 3+ years post-RALP, still putting out zero's on the PSA front, still taking testostosterone, and with one exception (abysmal orgasm...
Steve, The tiny thing home is going gangbusters here in VT. I belong to a CrossFit gym (a group of odd ducks to begin with) and it's amazing how popular the tiny home thing is. One of the guys in our...
I think you are doing the right thing in at least considering this. Life is just too uncertain. Regretfully, 3 cancer diagnoses that really caught us off-guard (early 50s is not when I expected 3...
I'm a ski instructor and I managed to ski just 4 weeks after surgery - a bit before my docs wanted me out there. I remember being in the locker room the morning I was back, thinking that I'd be fine...
If it's not too late, I have a barely used pump at home that I'd be glad to part with. I can get the brand info for you if you are interested. I wasn't crazy about the pump and quickly switched to...
I just started gem/tax for another cancer and found the first round to be pretty rough. But, it sounds like most of your pain was from the Neulasta shot. I've had a fever, chills, messed up taste...
https://clinicaltrials.gov/ct2/show/results/NCT01712009?sect=Xd5601 Note the 95% confidence intervals - not very impressive at all, to be honest. It doesn't even seem to show a placebo effect, IMO....
In double blind clinical trials (mostly focused on breast cancer) there is zero evidence that Claritin actually helps with bone pain from Neulasta. It is an enduring story and I see it repeated all...
MSKCC might not do HDR brachy, but they are doing high dose IGRT, if that might be an option. I had it done there in December for a liposarcoma recurrence. They only have one machine that supports...
I had one test just past the two year mark come back at 0.1. I freaked out. The urologist said not to worry, kept me on my testosterone regimen, and re-tested in 6 months. Both tests since then have...
Today is the 3 year anniversary of my RALP. PSA is undetectable in this week's test....
I've had banding done, but it was before PCa. I found it to be inconvenient, uncomfortable, and effective overall. When the tissue finally dies and sloughs off, there is an instant feeling of relief....
Hello everyone, I don't post here much anymore, although I stop by and catch up a couple times per week. I am coming up on the 3rd anniversary of my RALP, my PSA remains undetectable, and have been...
I've been doing injections for most of the past 5+ years, with a break between my diagnosis and my six month post-op PSA test. My first doc wanted me to really "optimize" T levels. He was shooting...
I was on TRT for a couple years before diagnosis, and after a very reassuring post-op pathology report, I resumed TRT six months after surgery. It's been 2 years now, and my PSA remains undetectable....
Trimix worked for me when I was at a point where things wouldn't have worked otherwise, even before my surgery. A night on the town, a hotel room, too much wine, and I was shocked at how well it...
Two weeks ago, I went to NYC for the day, to have a CT scan to look for liposarcoma. I had surgery for liposarcoma last September, it recurred by November (no clean margins in first surgery), I had...
A year ago, I was feeling really sick and it turned out to be anemia that was making me feel this way. I'm not going to go into what was eventually found as the source problem for me, because it's so...
Thanks for the comments everyone. Dealing with 2 primary and unrelated cancers, one after another, has been challenging enough. Plus, my wife had 2 operations for a rare form of melanoma between my...
I've mentioned in the past that rather than worrying about PC, that I've been dealing with a rare cancer called liposarcoma. Over the winter, I had four rounds of inpatient chemo and I then went to...
In software development, we talk about the triad of time, quality and money. You can't improve in one of the areas without affecting at least one of the others. If you want to spend less money,...
I don't think that the "saturated fats are bad" wisdom is correct or makes sense. So, maybe there is absolutely nothing that we can all agree on. Most of the fat in my diet comes from grass-raised...
I've been there. When I was there, the top floor exhibit was all about John Lennon. It was very moving. The one-hit wonders room is pretty interesting - all those songs that we all remember, but...
Some say grains are very good for you. I go out of my way to avoid grains and grain-based products, although life without occasional pizza might not be worth living. The "science" of nutrition is in...
Oh yeah, I was mostly writing about liposarcoma, so I didn't post my result after it arrived. Undetectable at 2 years. My oncologist kind of laughed about me wanting to know it. She said it's far...
I am just starting the 3rd of 4 rounds of chemo. I had a CT scan last Thursday. I expected to get the results on Tuesday, when I'd be having a consult with a surgeon at Sloan Kettering. My medical...
The trend in hospitals where I live is also to all private rooms. There is no way that hospitals can really claim that HIPAA rules are being followed in semi-private rooms, yet they never seem to get...
I'm on a different chemo regime for a different cancer, but I also hit my halfway point today. I'm getting doxorubicin and afosfamide. My hair is gone, although it was day 14 rather than 12 for me. I...
Great news on the lung scan. I can't describe the deflating feeling of hearing the phrase "Stage 4" from my oncologist recently. She said it was a technicality, because the metastasis is local to the...
I took my driver's license test in an AMC Hornet with a 3 on the tree. I hated that car. My parents replaced it with a 1977 Pinto station wagon. They gave it to me as a college graduation present...
I use a different off-shore pharmacy than others have mentioned. I got my last shipment in late October, and it arrived after the 10/15 "crackdown" date that the FDA had imposed. I don't know how...
I've had bad reactions to prednisone and dexamethasone. The latter was part of my pre-meds for chemo a couple weeks ago (not for PCa, but a different issue), and I basically passed out from the...
It's interesting that you mentioned chasing anemia. I had severe anemia all summer and it eventually led to a major surgery and diagnosis of a very serious liposarcoma. I had a colonoscopy scheduled,...
I hope you are all comfortable with the decision. It sounds that way, which may be as good as it can get. I wish you nothing but peace and comfort....
The whole "seeming to beat one" and then slapped down by something worse is a real kick in the nuts. I wish you the best and I can certainly empathize on some level. I have told some people that PCa...
Yeah, I'll be in for 5 days/4 nights each cycle. That will be bad enough. Doing 45+ days in a row would be unbearable. I need to exercise and it's hard to do that in the hospital. I'm already mad...
After getting my liposarcoma diagnosis in September, and mentioning it here, I said I'd stick to PCa topics in the future. But, a few people suggested that they'd like to hear how things progressed...
The chief medical officer of my company survived stage 4 esophageal cancer - almost unheard of - and he's still clear 6 or 7 years later. He did say the treatments were painful and his wife said he...
I don't know many details, but it is being used more and more, it seems. There are at least 2 sarcoma and liposarcoma groups on Facebook and it's been discussed at both recently. I had my original...
This is being used to treat recurrences of liposarcoma, my latest battle. A friend will be undergoing a NanoKnife procedure this coming Friday, and I will be discussing it with my surgical oncologist...
I just used pain meds for 8 week after an open nephrectomy. I left the hospital with dilaudid, which I had also used in the hospital. I went home with instructions to use about half as much dilaudid...
On the flipside, doctors are now terrified to give out pain meds to some people who need them, for fear of getting in trouble. I had an incident in the hospital in September where I got caught...
My plan is simple for the PDE5 inhibitors. None are covered at all for ED, but there is a slight exception with Cialis for BPH after other drugs have failed. This is how it works in every single ACA...
A second vote for The Wall. Social Distortion's self-titled 3rd album. David Bowie's Station to Station. And yes, I have all of these on vinyl. I have 3 turntables in my house and I use a tube...