1959 / Class of '08 / PBSCT after hyperbaric treatment / ALA for neuropathy / Updated: 12/12
[By his wife, Lori, on 12/12/08] We were diagnosed in June, 2008. Dave is an otherwise healthy male, 49 years old (as of Dec 2008), Hispanic origin. He is a telecom engineer. After diagnosis a friend of mine in Kentucky in the horse business called me and told me to get Dave into a hyperbaric chamber for Dave's transplant. She lives next door to a rehab center for thoroughbreds who use hyperbaric for horses and other animals, and I have met them on several occasions. They sent me the attached paper from U of Penn, by Dr. Stephen Thom regarding mobilization of stem cells 8-fold, using hyperbaric treatment.
This became of more interest to me after we consulted with two facilities for transplant and learned that due to Dave's "extensive" radiation, it would be possible, but arduous to collect enough cells for his transplants. As you may know, Little Rock collects for 6 transplants (20 million cells). Hyperbaric also heals radiation necrosis, which Dave didn't have, but of course he has had damage from radiation, so I figured it would be another benefit. (see attached paper) I had no idea what trouble patients can have in collecting cells until we got to Little Rock. I learned how devastating and expensive it can be for post transplant patients who come from other facilities and have no more cells for transplant and so on. All stuff you are probably familiar with and I'm just learning.
We didn't think we would know if any of it made a difference. Well, Dave's WBC was 0.07 and then in 24 hours jumped up to 1.18 and I begged them to do the pro-count because he was in so much bone pain, which I knew was due to the stem cell production in his body. They told me they didn't do until 2.0, which I knew, but I told them we did hyperbaric (which by the way, we had an OK from his doc here to do it if we wanted, with a bit of a shrug) and I was very concerned about his pain levels and continued growth hormone shots. So our APN called the collection doc and explained the situation. She asked when his labs for that day had been drawn and it was about 30 min prior so she agreed to walk over to the lab and wait for the results. Dave's WBC had jumped from 1.18 to over 13 and she ran the pro-count and then walked over from her clinic to find Dave and I and tell us that the pro-count revealed he had 50 MIL Stem Cells available for collection so we rushed around to get his Quinton line put in and missed the deadline for that day. We went in early the next morning and they ran him only 45 min total, start to finish, and collected 27 MIL cells. They told us this has never happened from a person who had received radiation as extensive as Dave's and they wanted the paper on the hyperbaric. They have patients they have been collection for months that can't get even 1 MIL cells for a transplant and are now considering giving this a go.
They require a 2 day run, and ran him for 35 min the second day, but I don't have a result yet on how many they collected.
Dave's pro-count yesterday after a 2 day collection were 90 MIL and I don't yet have the pro-count from today's labs. He is 2 days from the growth hormone shots.
Anyway, I thought this might be of interest for those patients who need to collect and are struggling.
We were striving for 20, 90 min hyperbaric treatments at 2.4 ATA (atmospherics). We got in 19 before we left. Apparently the general rule of thumb is that treatment 10-20 is exponential on whatever benefits occur from treatment 1-9.
We just learned of Alpha Lipoic Acid having a relatively new finding and being used sporadically among some onc docs for treating Peripheral Neuropathy caused by chemo, particularly Thalidomide. In Dave's initial Thalidomide/Dex treatment we switched from neurontin to the ALA, 1200 mg daily and it did the trick. Within an hour after taking 600 mg in the morning his symptoms would disappear. You can safely take up to 2400 mg daily. We were asked to stop taking it during our treatment at LIttle Rock, only because they weren't sure if it would have any adverse effects on the chemo working.
November, 2010: Dave continues to do extremely well and it feels good to get some semblance of normalcy back in our lives. It was a bit rougher for me I must say when he was back at work and we were done with all the drama of the major medical intervention. I'm beginning to feel a little less "lost".
If you want Dave's labs or any other information on this I would be more than happy to share it.
December, 2012: Dave has completed his three year maintenance therapy and is now off all medication except the prophylactic antibiotic (Acyclovir) until his immune system recovers. He continues to work a full time job and has finally begun working out with a trainer to try to get his physical condition back to what it was before treatment. We will continue with checkups in Arkansas every six months, then 9 months and then hopefully one year. We are sending monthly labs to them.
Lori Puente 916-478-4479
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