Hi -
Dad has declined. Last week we had lots of activities, and I think it was too much for him. Tuesday was our 3rd dose of Nivolumab, Wednesday was a visit with the NO (a 5-6 hour ordeal roundtrip), and Thursday we had our Optune hat arrive. Dad removed it 6 or so times that night before Mom gave up for the time being. Dad has been sweating much more than ever before and had difficulty holding his head upright at the NO's office, Mom had to cradle his head.
Just this week his breathing is laborious and he had a bit of a rattle, but the rattle seems to have gone away. He is now sleeping and has been all day. His blood oxygen is only 85% - which is a drop from our usual 97-98%. Otherwise his vitals seem good.
Our background: Dad had 1 round of Temodar last Sept/Oct during radiation, became impaired (couldn't walk, speech worsened), local Oncologist assumed the Temodar wasn't working and switched us to Avastin. In hindsight, his tumor did not progress and the radiation was hitting the motion strip of his brain - it is entirely possible that he DID respond to the Temodar, and that the symptoms were due to the radiation. NO at UCLA said that as the tumor did not progress this is likely.
Late May, after 6-7 months of Avastin as a monotherapy, (+ cocktail including DCA, etc) Dad's tumor had it's first increase. Another local Oncologist said we could revisit Temodar since we never tried the maintenance dose. Dad received 1 round of the 5 day Temodar - it was well tolerated. While this was going on our application for Nivolumab was approved. The Onc then said to stop Temodar and just do the Nivolumab (this was not a NO, just a regular Onc).
We then saw our NO and started the process of getting an Optune hat. The NO weighed in and said that we could try Temodar + Optune, in addition to the Nivolumab, but wanted to wait a month until Dad's had time with the Optune so as not to change too much at once and have so much toxicity in Dad's system.
Dad won't wear his Optune. I am thinking of maybe trying the Temodar on a metronomic dose schedule, as we happen to have some from a friend. The NO didn't give us any yet.
You are all as aggressive as me, and I value your collective opinions. Would you go ahead and give the Temodar on a metronomic dose? I honestly believe if we don't he will not make it til next week. If we do, he might still perish but will I be harming him? Is there any chance it can help him? I have verapamil, celebrex, disulfiram, copper, everything to make the Temodar more powerful. I don't want to have regrets about 'not trying' but I also don't want to regret making him sick (if it will) or making his last days horrible.
What would you do... Dad was on board with absolutely everything early on. Now he can't communicate so we can't ask him. Is metronomic Temodar unbearable? Does anyone have personal experience with it? Are we too far gone?
Love to all.
Annie
Annie,
ReplyDeleteYou have not mentioned the status of the tumor itself. Recurrence, but how big is it and is it operable?
I just talked to Unifontis, couple of NOs and an Integrative Clinic earlier today. In our case Temodar + Radiation impaired mom a lot and she has not recovered yet. There is recurrence. We are working vaccine option. But two things I did not know that these German researchers really emphasized on for direct action against tumor --
1 - If you do try Temodar, then do it with D,L-Methadon. Contact Dr. Friesen immediately for clarification and dosing. She told me that she has had many patients in hospice go into remission with this combo. She passionately spoke about it and sent me research papers. I will send those to Stephen to upload them. I am personally convinced about doing this combo if I were to do Temodar again, and so are my two integrative physicians.
2 - Try Diflusinal if you can get it. It's a form of liquid Aspirin. Dr Drevs recommended it strongly in our case. It should not have much side effect. It is available in Germany.
In addition, four items were unanimously agreed by most of them -- high dose Vitamin C IV (25-50 g three times a week); Poly MVA - 4 tbs per day (buy it online); Artemisinin mix (Artemix - buy it from Hepalin.com) and Cannabis (1:1 ratio of THC/CBD -- needs to ideally build up to 1 gram per day). These things should not have much side effects.
They did not agree to other drugs such as Disulfiram, Celebrex, Prozac, etc as my mom can not tolerate the mix of all these other prescription drugs cocktail and they are not sure if these would help enough. Approach is to still have a cocktail, but with only a few items that may have potent effect if it clicks. Only other things we are taking are Honokiol and PSK/PSP Extract. Nothing else - to keep it simple for her as she is tired of too much medicines. Have you tried to explore vaccines?
My 2 cents... as I confronted the same question you did. If you want contact info for any of the above, let me know your email.
These case studies of remission following TMZ + methadone really ought to be published if true. Apart from this all we have to go on is in vitro and mouse work that is only moderately interesting on its own. However, remissions in hospice patients with this combination would be very compelling.
DeleteHi Jinesh,
DeleteI have just read your post. I also heard about synergistic effect of TMZ and D,L-methadone. Also contacted Dr Friesen and spoke with her on the phone several times.
You mentioned cannabis as an addition to the basic set of drugs, but as far as I know it is not recommended to take methadone and cannabis together as the latter one might diminish methadone's effect due to its influence on opioid receptors. This is what Dr Friesen suggests, also on the basis of another study: http://www.ncbi.nlm.nih.gov/pubmed/16489449
Have you heard anything else about using cannabis and methadone together?
The immediate issue, in my mind, is his breathing. O2 sat of 85 with labored breathing suggests an acute, serious problem. Either pneumonia or pulmonary embolus would be common problems, though there are many possibilities.
ReplyDeleteA basic decision here is whether to just keep him comfortable in his remaining days to weeks, or continue the fight aggressively.
If the latter, chest x-ray and evaluation for infection, pulmonary embolus, etc would be the immediate next step.
It really sounds as though he hasn't had an adequate trial of temodar, especially if it was well-tolerated. My wife's on a trial protocol of temodar+Nivolumab, despite being an unmethylated tumor. She, too, has had significant impairment from radiation.
Many seem to find the optune poorly tolerable. I'm not wildly impressed by its efficacy so far. I think its worth doing for those who tolerate it well and can afford it, but only if tolerable and affordable.
Thank you both immensely. We've decided to give it a try as I know Dad would want to. I've also increased his sulfamethoxazole in case he does have pneumonia. My Mom is an RN so we have a pretty good staff here. His SAT dropped today from 84-86 to 80-81. I don't want him to die without feeling like we tried everything available to us. I will keep you all posted.
ReplyDeleteThank you so very much.
Love, Annie
Jinesh R, may i ask about contacts of Dr.Freisen?
ReplyDeleteclaudia.friesen@uni-ulm.de
DeleteHi Annie,
ReplyDeleteI agree with SteveMDFP's concern of pneumonia or pulmonary embolus. Your Dad is at increased risk for either of these conditions due to having cancer, being immunocompromised, and being non-ambulatory/sedentary. If possible, the cause of his low blood oxygen level should be evaluated emergently-even at a local hospital- and may be treatable.
Pneumonias are caused by different bacteria/viruses/fungi/other rarer causes or even secondary to aspiration. Sulfamethoxazole may not be adequate as a singular agent and possibly may not be the correct antibiotic(s) to cover the infectious agent. Also being on supplemental oxygen may be very helpful at this time.
Wishing you and your family the best,
Mike B.