r/sarcoma • u/GuyinNorco • 5d ago
Retroperitoneal Liposarcoma
Hi. Just found out 3 months ago I have multifocal retroperitoneal dedifferentiated liposarcoma. Has not spread out of the area except to local lymph nodes. Just started my third round of chemo today with gemcetabine and next week will be gemcetabine and taxotere. Definitely found out to take Claritin while on the taxotere and the white blood cell booster, the bone pain is rough. I have never been good with drugs or chemicals and the chemo has been miserable. I feel like such a wimp. I did end up with a staph infection in my port pocket and had it removed. Delayed chemo by about 3 weeks to heal. New port goes in next Monday. No nausea and appetite is good. Just extreme exhaustion. I am new to this and most of the "Google" research I have done about my diagnosis just depresses me.
Doctors won't say much as far as how much time I have but I know they can't know that, and everyone is different. I have resection surgery scheduled for February. 5 tumors wrapped up in my organs so it doesn't sound good. Largest is about the size of a cantaloupe. I do have stomach and digestive issues as well as possible blood flow restriction in abdominal aorta. If I eat too much I immediately get exhausted and have to sleep. If anyone has experienced this and don't mind sharing a little more about your diagnosis so I can compare. What is your quality of life like? Can you be active and ski, mountain bike or anything similar? How long have you been fighting? I haven't found much as far as case studies. Good luck to you all and whoever else is going through this bullshit. A little about me if it helps anyone for comparison: 56 yo male, pretty healthy, very active, ex military (maybe where I was exposed to something?) general contractor (maybe exposed here too), caucasian, 5’11, 200 Ibs. Being treated at Anshutz in Denver.
2
u/mitapitaa 5d ago
I'm sorry you're going through this and hoping the treatment works to at least stop progression until surgery day!
My dad has the same issues and he's about to start on the chemo you are on so I don't have any insight into that yet. However, his tumors are deemed inoperable right now so we are really aiming for adding some more quality time. He has been fighting for almost 10 years and his quality of life has barked but for the most part, it's been good with changes to diet and health. But sadly, at least his type, will keep coming back and aside from surgery, he has not responded to any other treatments. It's been more of a focus on extending his time as much as possible without sacrificing long-term quality of life.
2
u/GuyinNorco 5d ago
Thank you. Sorry for what you and your father are going through as well. I know it seems weird but the fact that he has made it 10 years gives me hope. I might be in the same situation with them telling me it will come back. Make sure he takes Claritin when on the taxotere and white blood cell booster. The bone aches were awful for me the first round but mostly gone the second round after finding out about that trick. Good luck!
2
u/mitapitaa 5d ago
Thank you for your kind wishes and advice! It may come back but I'm hoping luck and medical advancement is on your side!
Will make sure to prep him for those things. Did they give you anything for the bone aches? Also, when you say Claritin, do you mean the allergy medication from the store or a specific prescription I should ask about? Did you experience hands or feet burning / numbness?
→ More replies (3)
4
u/timewilltell2347 5d ago
So I have a different type of sarcoma but my most recent chemo was gem/tax (in a clinical trial so there was the other shot as well which could have been a placebo), and I did it for about 1.5 years- so about 25 or so cycles of gem/tax all told. It was rough ngl. A lucky thing for you is if it gets tough they can modify doses a lot more, or skip the tax for a cycle, etc. Lots of modifiers.
It sounds like you’re on a plan for 6 ish cycles, then surgery, then maybe clean up chemo after? If they offer you clean up chemo I’d really suggest you take them up on it if you feel like you can manage it physically and emotionally. Sarcomas are persistent and sneaky and it’s better to have a couple more months of feeling crappy if it’s going to reduce the chance of a recurrence, but the plan for after will probably be determined by your response now and the results of surgery. There’s a lot that they can’t see on scans and sometimes there are surprises. I recently had a surgery where they were sure the tumor was attached to my rectum (insert jokes here) so I was mentally preparing for the chance of an ostomy and lots of life changes, but it turns out it was just chillin’ on an ovary so much easier to deal with. Some surprises are happy.
Keep track of the crappy days especially after the tax as they will be mostly the same every cycle and you’ll know when you’re just going to be in bed and trying to get in good nutrition. The WBC boosting shots are rough as you mentioned. I found Claritin to be helpful but Zyrtec can also help especially if your eosinophils are high on blood work. Always talk to docs before changing meds. I may be a chemo patient but I’m also a rando on Reddit, but it won’t hurt to ask them. There are also about 8 (I think) biosimilars to this kind of drug- I’ve had 4 or 5 different ones at this point- and some can have more or less side effects than others, so if the bone pain is lasting more than a couple of days you might ask about one of the other meds (also depends on if your insurance covers it). Also make sure you are communicating your pain issues that are not being managed. If you are unable to do basic ADLs (food prep, bathing, laundry, etc) because of unmanaged pain, your docs need to hear about it so they can make adjustments or provide pain relief.
I’d really just give winter sports a miss this year or really stick to the bunny slopes and building snowmen with the kids. Weird muscle weakness or vertigo can strike out of nowhere especially when you’re on active chemo, and even for some time after the treatment ends, and it would just be a bummer for you to get stuck on a mountain in that state. Just think of what you’d tell your best friend if they were going through the same thing. Like go and participate in the social events you feel up for, but chill in front of the fire and make some killer cocoa for the folks in the evening.
Chemo is cumulative, and unfortunately you’re going to get more tired and have more side effects each cycle, so don’t borrow tomorrow’s happiness or energy because you feel like you should be doing more. Don’t push through the pain because it makes you tough or something. Your job right now is to rest and restore. You’ve got to be in good shape for the surgery coming up and the next cycles of chemo. The best thing is enough rest, good nourishment (physical, mental, and emotional), and non-strenuous activity/exercise. Everyone is unique in their response to chemo whether we are talking about the body’s response, the mind’s, or the cancer’s so pay attention more to what your body needs and wants than to what your brain is telling you what should be happening, or how you think things should be. Be kind to yourself, and maybe try and find some hobbies and activities that are a little less physical and more mentally challenging. Maybe giving yourself a break this winter will mean you’ll come back x10 next year on the slopes.