Liposarcoma update

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 quality), I'd say that the PCA is not in the front of my thoughts very often.

I am still in an intractable battle with dedifferentiated retroperitoneal liposarcoma though. There are about 300 people per year in the US who hear that diagnosis.

I had some high dose IGRT in December, with a goal of surgery to remove a tumor in early February. Then, at the last minute, some new tumors were found and the surgery was postponed in lieu of another systemic treatment - gem/tax for me this time. For all of you out there who have done gem/tax, my hat is off to you. My previous chemo, a protocol called AIM, had been inpatient and difficult. Yet, it was mostly acute - pretty nasty during treatment, but a decent recovery between rounds. With gem/tax, I've found that each round just gets more and more fatiguing, and it's really made some things a struggle. When I feel too tired to go fly fishing, something just isn't right.

After 4 rounds of gem/tax, my CT scan showed that 3 of 4 tumors had grown (gem/tax has about a 30% success rate for my dx), and only the irradiated tumor was really non-viable.

And then, my medical oncologist realized that the radiologists compared the wrong two scans. I have no idea how she figured this out, but I'm glad she did. (The hospital is investigating how this happened but I don't have high hopes that much good will come of it.) After re-doing the proper comparison, the irradiated tumor has shrunk a lot. The second biggest tumor shrank a lot as well. A third got slightly bigger, but the density changed and it was described as necrotic tissue. A fourth tumor, along the colon, did grow, but it seems to be missing a fatty component typical of dedifferentiated liposarcoma. The hope is that it's the well-differentiated subtype, which does not metastasize, and that it can easily be resected during surgery.

So, I'm continuing with gem/tax. Round 6 is next week and we might stop anytime after that. They are still trying to decide if the 7th and 8th rounds would have more benefit or risk to me. The thought is that it might be best to stop at 6 rounds, let my immune system heal up, and then go in and get those four tumors out of there. OTOH, there is the argument that the response I've had is decent but not earth-shattering, so perhaps we should go for all 8 to do maximum damage to the tumors.

In June or July, I'll likely have surgery at MSKCC, where the top dog surgeon for this stuff does his magic. And then, we will wait again. This beast tends to just recur over and over again. Luckily, I still have another 4 or 5 systemic agents that we could try, and I have not yet gotten to the end of the line on surgical options. Eventually, people usually end up with tissue that can't be cut any more or no systemic treatments work, and it then becomes a palliative situation. This is especially true for the dedifferentiated and pleomorphic subtypes. Rob Ford, the alleged crackhead mayor of Toronto, died from the pleomorphic subtype of this disease.

When I was first diagnosed, the 5 year survival numbers for my staging were about 50-50. With some new systemic agents, and having access to the surgeon at Sloan Kettering, I'm still hopeful that I can beat those numbers by some sort of margin. With 2 kids in college and another trout season here, I'm not ready to move on quite yet. Plus, despite my complaint about poor orgasm quality, I'm certainly still enjoying life with my bride of 30 years.


Best of luck to everyone. I still read posts here all the time, but being pretty sure that I'm in the boat of people who won't die from PCA, and maybe not even with PCA, my focus has certainly wandered from PCA. I was saddened that we lost the host of our local support group to the disease recently. It's a good group of guys - lots of whom did proton therapy and most of whom are doing well.

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 compare January and April to measure the efficacy of the chemo. From November to late January, I had had the high dose IGRT at MSKCC, but the three other tumors were not being treated. So, for them to have grown a bit was not surprising.

As for comparing to PCA, there are times when I'm almost glad I had the PCA first. It gave me an intro to cancer as a patient, and started me down the the path to being an informed and active patient. Of course, I would prefer that I never really had any cancers, but having had PCA first has made the liposarcoma issue a bit easier to deal with. Going from healthy to stage 3/4 liposarcoma might have been more than I was prepared to deal with, although we don't really get to choose those battles, do we?

And yeah, they certainly are different diseases. There are about 85 types of sarcoma, I believe. They make up about 1% of all cancers. Of those sarcomas, liposarcoma makes up 15%-20% - the most common sarcoma. But, there are five distinct subtypes and they hit in different areas of the body. Even in liposarcoma research, other sarcomas are often lumped in with liposarcoma in trials. Leiomyosarcoma is often considered a sibling of of liposarcoma and they are placed together in trials. But, consistently, the results from the trials differ for the two cancers, and they differ a lot even for the liposarcoma flavors. I've even seen one researcher say that studying them together is like studying breast cancer and prostate cancer in the same trial.

I will never make the claim that PCA is a good cancer. There is no such thing. It's not just a starter cancer either. Yeah, perhaps it won't kill me, but it does kill men. We must never discount a disease that kills people. To trivialize it does a disservice to many men. At the same time, I would suggest that none of us wants one of the "orphan" cancers where research and specialists are limited.

I fully understand the economies of scale, and I understand why breast cancer, prostate cancer, lung cancer, etc., get the funding and attention that they do. When the primary chemo option for your cancer is a drug combo that is 40 years old, you know that it's not getting the research attention that patients would prefer.

In the 18 months since I first heard of liposarcoma, there have been a handful of new drugs approved for treatment. I honestly think that the overall survival statistics for the disease will improve over the next few years as Yondelis, Votrient, Halaven and a few other drugs are used more commonly. But, those are re-purposed drugs, for the most part, and soft tissue sarcomas remain deadly cancers.

And, lastly, thanks for the words of encouragement that I've gotten backchannel. I know this is a PCA group, but someone 18 months ago encouraged me to stay here and update people on this battle periodically. Mentally, even though it's a new disease, this group remains a resource for me, a reminder that many of us are locked into tough fights that we never wanted.


Damon

Thank you for posting,
Your openness and positive attitude inspires...even a newbie ;)
Being new to the world of cancer can be a rather lonely battle as it's difficult to find those who have some true life knowledge.

Good luck with your treatments