Sunday, March 29, 2009

Roller Coaster ride with Myeloma at the controls

Life has its ups and downs, highs and lows for everyone. Lately we've certainly felt like we've been on one, traveling at breakneck speed, mostly downhill. We had accepted Frank's diagnosis of cancer in February and the change in many life plans that it implies and certainly have faith that whatever happens is the Lord's will. We all will die sometime anyway, right?

We however, are not ready to give in to this demon without a fight--our very best efforts. After the diagnosis, I spent many hours every day researching the internet and reading books about cancer and non-toxic ways to heal. I carry bags of books with me when we travel, I often stay up till 1 or 2am, trying to absorb and retain the mountains of information available. We both feel strongly that since the chemotherapy he had 17 years ago for a previous cancer plus radiation he had received as a "downwinder" growing up in St. Johns were the cause of his present non-curable cancer, we don't want to go that route again if there is another way. We have felt the guiding hand of the Lord in helping to lead us, step by step, to information that has been helpful.

Well, I purchased from various places (mostly online) numerous supplements that have shown through many clinical trials to be effective against cancer in general and Multiple Myeloma specifically. He takes handfulls of pills a day (not his favorite thing to do) and trusts my judgement that they will work. The most promising one, curcumin, took awhile to arrive and since he takes 8 grams a day (8 LARGE pills) I started him on a low dose and gradually built up to full strength. The great news was that none of the many supplements he is taking including the curcumin, have caused side effects and are non-toxic! Yeah!!

A few days later he had his monthly lab tests and then a checkup by his Oncologist. Not good. His white cell count (his immune system) had dropped like a rock. The doctor wanted to start him on chemotherapy immediately, said his genetic studies showed he had an aggressive kind and that the malignant cells were crowding out his good cells in the bone marrow. What a blow! We had really hoped and expected better, not worse results. Well, Frank had taken his day planner and he opened it and showed the doctor his schedule for the next few months and said he didn't have time for that [to spend 4 days a week in Mesa getting toxic chemo plus labs in between]! He had other things to do. The doctor finally agreed that for now he could just take a powerful steroid plus an antibiotic and we would return in one week.

We filled the 2 prescriptions and drove back to Heber. I reviewed the research I had done on Curcumin and still felt good about it. Then I looked up dexamethazone, the steroid, and found some benefits but many serious side effects including lowering of the white count. Great. . .so that's why he wanted Frank on the antibiotic even though Frank told him he felt good. Not only that but in clinical trials, it had worked against curcumin, negating its effectiveness. Anyway, we discussed the whole scenario and decided that he not take the prescriptions and continue the curcumin and other supplements for the next week, giving them more time to work, figuring it might take 4-8 weeks to see a positive result.

The following week was very stressful as we prayed that the regimen I have him on would work and we would be able to continue with our normal plans. He cancelled cataract surgery planned for the next couple of weeks because an eye infection with no immune system could cause blindness. Not a good prospect. Will have to wait till later for that and put up with foggy vision till then. We also increased his curcumin to 12 grams daily.

He held off till the last day to get his labs done then last Friday we returned to the Oncologist. When the doctor came in he looked at the chart and then told us that Frank's white count had greatly improved--by 100% over the week before! [It's still below 4, below normal but not in the critical range] Then he said, "Those steroids really worked!" We looked at each other and replied that he hadn't taken them and explained why. I had brought a stack of papers with much of the research I had done on curcumin and told the doctor he could make a copy. He wrote the word 'Curcumin' down and said, 'No, by next month I'll know all about it.' We wanted to dance and shout at the good news of Frank's labs and also were happy 1)that the doctor didn't throw us out of his office, 2)that he has an open mind and will do his own research, and 3) that he didn't want to see Frank for another month!

Can't argue with success!!!


Kristal and Jason said...

You forgot to mention that you upped his dose of curcumin to 12 grams the week before his last labs. I'm so happy for this news and hope that he continues to improve. We love you both so much.

McTwirly said...

Your blog entry popped up on my curcumin Google Alert (free service, you can receive an alert with news on any given topic either daily, weekly or monthly).
My seemingly healthy and robust husband was diagnosed the day after Thanksgiving with a plasma cytoma in his L-5 vertebra. Fast forward through radiation and reuslting compression fractures on that vertebra, two months in the hospital mostly flat on his back, a trip to Mayo Clinic, and he is awaiting surgery for a rod from the sacrum to L-4. The significant part of this story is that I have finally talked him into taking curcumin hoping to halt the rapidly changing numbers pushing his smoldering myeloma diagnosis into mutliple myeloma. He is up to two a day, both he and every doctor we have seen are skeptical. Do you read Margaaret's Corner, her blog on curcumin etc?
Thanks for sharing your story. I read it to him.

McTwirly said...

Sorry about the double post.
I'd REALLY like to know your schedule for going up on the curcumin and why you decided on 12 grams. I read the recent Australian study that got results with 4 grams, and also the MD Anderson study that used 8 grams. This is totally uncharted waters for us, and so far our medical care providers have not offered any support. Well, you know how that goes! I've held off trying this with my husbanc through his hospital stay and return home, until now, at the request of doctors who claim they need to know what pain meds are working without interference. Well, I'm really scared now, and I'm not backing down on this even if he has to have another interruption for back surgery. He may be prone to bleeding, may have to go off the curcumin briefly. Low platelets would be a problem. But until we know when, I'm pushing the curcumin.

KaNdRa and JaReD said...

Yeah i would have to say that it has been a week full of ups and downs. I know that there is a reason that Dad has been spared through all of his health issues over the years and I don't think this will be the exception. Just go with the your gut on what you should do. See you soon. Love ya!

Dawna Greer said...

Thank you, Julie 'McTwirly' for your comments. My husband is also very stubborn and not into health supplements but didn't want to go the chemo route so my research began. Margaret's corner is truly a goldmine, a treasure, with so much wonderful information just a click away. After learning about her success with curcumin, I started Frank at 2 grams for 2 or 3days and when he didn't have any side effects, I then went to 4gm for 3-4 days, then 6, then eight, all within about 2 1/2 to 3 weeks. He tolerated it well, taking them all at once before his evening meal along with Omega 3 and flaxseed oil, vitamin E and D, all oil soluable . I later read that heat greatly helps the absorption of it so I make him an apple cider/cinnamon tea and add 1/2 tsp oil to it to enhance the absorption of the curcumin. I'll write up a list of all the things he takes at various times. When his WBC went down instead of up at his doctor visit, I decided to increase the curcumin to 12 gm. and he took it at that level for the next week until we returned to the doctor. He started to have a little rectal burning as it passed thru so after the good results, I dropped it back to 8 gm. I have read (don't remember where) that the higher dose, the more effective it is but if this is going to be a long term deal, then I don't want to 'burn' him out on it :) If I find I need to increase the dose from time to time, he said he can tolerate it. You will probably have to hold the curcumin for a few days around his surgery because of the blood thinning properties but be sure to give him good doses leading up to it and after. Tell him good luck with his surgery. Margaret said that all her arthritis pain in her knees went away after she started taking curcumin so maybe it will help your husband with his pain.

Tina said...

It's good Frank has such a smart nurse/researcher on his side! This progress and improvement is wonderful... so glad! xox

McTwirly said...

Thanks for the details. I am emboldened! He has said he thought he would go a whole week on each step, so far I have managed the jump to 2 grams a few days early. I have added an oil capsule (it has fish oil, flax oil, and a third oil I forget). Dinner calls.

McTwirly said...

I read that curcumin has a blood thinning effect and had to do a lot of persuasion to get Van to agree to start now because his parents both had bleeding problems. we see our new oncologist tomorrow and I will ask how far ahead of time (and after) to eliminate the curcumin. I don't antiicipate that discussion will be a great introduction but it is necessary. Also curcumin can't be used with NSAID pain relievers, which didn't make spouse very happy, but there are a host of pain relievers so I didn't consider that a problem. He is already on several. And, curcumin has the same effect on cholesterol as the Lipitor he takes. Unfortunately the GP wasn't interested in exploring the curcumin so we're on our own about that. I suppose we could ask to check the cholesterol along with regular blood draw next time. We have a new onc because we have a new ortho surgeon and they are both in the same institution. I'll check in with you this weekend, interested in your husband's drug regimin and progress. Thanks!

Rachel and Jake Squire said...

We are so glad he is doing better! Thanks for keeping us posted!