This morning I read this post from Inspire (ABTA) site. I thought Minsha did a great job encapsulating GBM from a caregiver's experience. I'm sharing this with her permission.
"I thought I share my thoughts after 10 months (and continuing) intense research and my husband’s brave fight against this dreadful disease.
My pearls of wisdom, as a simple caregiver (and generally relentless person):
- Look this disease straight in the eye and do not give up. If you don’t win the battle at the end, at least you have put up a good fight, and helped future patients learn from your experience.
- Trust your body. Don’t feel it has disappointed you.
- Treat your body (and soul) well. You’re body is fighting HARD, even though you can’t sometimes see it. Rest, stay active, do supplements, eat right, and “meditate”, and let people take care of you.
- Most likely, the chance of dying from GBM is much greater than any of these treatments (FOR NOW), but this is changing very rapidly and patients ARE living much beyond the 14 months …. all the statistics are getting to be “obsolete”.
- For you not to be part of the lucky few of the past, you need to take advantage of the NEW TREATMENTS in addition to SOC, and for the moment most of these are offered “trials” and off label.
- Trust new treatments, but be very cautious of “new things” (Phase I-II) studies were they are trying to get the safety and dose escalation done (unless you are desperate, or the same drug has passed Phase II in similar trial).
- Try to find a trail that is Open Label and Non Randomized, if it is available.
- Every drug company wants “IN” on this lucrative business. Do not go for treatments that have not shown good results at least in 100s of people tested.
- Do not let comments on drugs/treatments scare you. Comments like "Temodar weakens your immune system”, “Temodar does not work on un-methylated”, “Use of Avastin, or immunotherapy will disqualifies you from X and Y future trials.” These may be partially correct, but NOT by any means the “General Rule”.
- Make the best decision “at the time” you need the drug/treatment to have the odds in your favor.
- All decisions need to be made based on Risk/Rewards. Nothing about this disease or fight is guaranteed. If the Rewards outweigh the Risk, that is is GOOD in the world of GBM.
- Once you make a decision, do NOT look back. You never know what you will do next. A decision that may seem wrong, may actually work to your advantage as you continue other treatments.
- Trials come and go, and change inclusion/exclusion criteria, Trials should be "Used by You" (if they fit the circumstances and your needs), and not the other way around.
- Don’t try to be your own, or your loved one’s scientist/doctor. The good doctors and scientists in this field have dedicated their whole career (sometimes life) to it, and they are on your side.
- All these sites and what we discuss, should give you thoughts to ask questions, and discuss with your NO.
- Do take your health in your own hands and make your own decisions, but let your doctors guide you.
- Ultimately you need to find a doctor and team that you “trust" and can guide you in making your decisions. There are “many" fabulous, highly experienced NOs out there.
- Every patient is “different”, and as we use treatments in addition to SOC, our paths are different. You want a team that is the "expert in the path you’re taking".
- Your NO knows you the best, and he/she is most knowledgeable in your particular situation. If this is not the case, change your doctor. Doctors like all other have their own biases and styles that may or may not fit you.
- If the side effects scare you, first and foremost inform your doctor, then you can look into our group for advice and help through experience.
I don’t know if all this helps, but this has guided us so far, and god willing we have KILLED all the cancer cells left behind after surgery (with RT, Temodar, PD-1 inhibitor). But we ARE continuing this fight following the same guidelines.
Please do share your own pearls of wisdom. It is greatly appreciated, and all the best to you and your loved ones!"