Resources for sarcoma patients/families

Link to National Comprehensive Cancer Network guidebook --- written for patients and families.

This booklet has a great flow chart and explanation for various stages of general sarcomas and treatment options. Great place for someone who wants answers, and can filter out what doesn't apply. The entire booklet can be overwhelming.. too many choices at once. But, it is a good place to learn your questions.

Another sarcoma blog:
Sarcoma blog - "Coping with the Big C"

Comments

Post a Comment

Popular posts from this blog

After waiting.... more waiting

It's been a long two months since I last wrote. I've been battling fatigue and depression while waiting for a clinical trial to open.  Parts of the problem are physical, lung tumor is pressing against lung, making it harder to breathe.  I've also got a painful cough.  Nights I've been taking fever reducers, then sweating.  This past Monday, I was admitted to the hospital for a clinical trial (I'm very excited). Only the fevers prevent me from starting the trial.  So we've run tests to find if there is an infection.  No.  Virus? No. They're giving me a week's antibiotics, and Advil to keep the fever down.  Next Monday I start the study.  I'm in the hospital basically for the next 3 weeks, Monday through Friday.  (as per research protocol. I'm ready for something to happen....
Read more

Possible scenarios.... outcomes... and preparing for the future.

In the first days of this adventure, I found this TED talk. Baba Shiv talks about giving up the driver's seat TED Talk .  With this rare form of cancer, I choose to listen to my oncologist, and follow her directions.  My goal is to live another 10 years.  My roommate challenged that recently.  His sister has battled a variety of cancers for many years.  She's tenacious, intelligent and currently in remission.  Cancer has become a chronic disease for many.  I don't know.  I don't have the data (until the results are reviewed by my physician) from the latest CT with contrast scan.  I've gathered the old CT scans from other facilities and will be taking them to Moffitt next Tuesday.  Then... well, then we'll have a battle plan.  Overall, I'm working on multiple outcomes.  I need to be prepared.  For example, I'm going through my bookshelves and discarding many books.  Why?  I may be moving to a different home.  Even if I'm not moving, I need to ma
Read more

Research update. Letrezole use for 10 years post breast cancer.

Below is a link to the original article. I realize that links don't live forever, so I've copied the article. I am currently on Letrezole.... and having bone pain. --Although that is something I'll be discussing with the doctor at Friday's appointment. Remember there are no easy answers... so a way to prolong life, also has side effects... pain, and reduced bone density. I'm grateful that I've drank as much milk as I have during the past decades. Hopefully, that will help strengthen my bones during this treatment. This also shows how treatments can cross from one cancer to another. I'm not sure there are any official treatments for my cancer, it is just too rare... so we keep trying new and interesting treatments. Washington Post Article about breast cancer and Letrezole Extending anti-estrogen therapy to 10 years reduces breast-cancer recurrence, new cancers CHICAGO — Researchers said extending hormone therapy to 10 years reduces the risk
Read more