Saturday, 17 September 2016

For Caregivers: Reposting from Minsha on the Inspire (ABTA) site

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!"


  1. Now write one for caregivers who are beginning to feel weary?

  2. I can answer that one. Get a break. Get more help. Do whatever you can to take care of yourself. If you go down, it all goes down.

  3. Now it's my turn to say Amen! Lol.

  4. Hello all,

    We have reached a crossroads, our oncologist does not want to give us a prescription for medication, said very clearly that next month will give us only temozolomide. and that is too much for my husband to take Celebrex for so long, that he destroy the liver, but has not given us to do any analysis before saying that.

    So I ask a question to you humble, honest and answer, please.

    We should go to another doctor or to make a break and take supplements only with temozolomide?

    1. I think you have some choices to proceed. I think firing the oncologist is low on the list, if he's otherwise good and his worst sin is being conservative/orthodox.

      He may be persuadable if you put scholarly articles in front of him to defend the use of celecoxib, like:
      "Continuous low-dose temozolomide and celecoxib in recurrent glioblastoma"

      You might be able to get celecoxib from some overseas pharmacy. Then you'd have to decide whether to inform the oncologist of your approach. I'd recommend doing so. He might tell you to stop. You might decide to continue, and inform him or not.

      From an oncologist's perspective, alternative treatments are a professional minefield. The history of cancer care is littered with a long list of utter quackery, foisted on desperate people by crazy or unscrupulous quacks. For a licensed practitioner to veer off the standard track means risking professional ridicule or worse. I wouldn't blame the guy for being conservative.

      But we're certainly using a cocktail approach in this household, and the oncologists are only vaguely aware of it. For us, a "don't ask, don't tell" approach seems to suit everyone best.

  5. Melinda, if we had gone with only standard of care, I truly believe my husband would be dead or almost dead by now. It was the supplements that brought him from a gaunt cancer patient with a particularly aggressive GBM4 to the pink, clinically healthy fellow he is now. As of the last scan 80% of his tumor is stable, i.e. not dead but not growing. 20% is still growing and so we added more supplements, the next ones on our list. If you don't mind me asking, where do you live?

    1. We living in Brasov, Románia.
      Sorry for late answer

  6. If one of the supplements you are considering giving him is cannabis oil, there is a Facebook site that you can request admission to:

    There are postings on there from people all around the world, both for CO and also for other supplements. The top three supplements (taken concurrently with temozolomide) that I think are making a difference in this GBM are 1. artemisinin 2. curcumin 3. cannabis oils (THC, THCa, and CBD). There are about ten others that I take, but those are the top three. Depending on the next MRI, I may bump CO to the number 1 spot.