Stem Cell Collection And Hyperbaric Oxygen Treatment
My husband was diagnosed in June 2008 with multiple myeloma at the age of 48 after having severe back pain, which turned out to be a vertebral compression fracture.
The local general oncologist started him on a thalidomide (Thalomid) and dexamethasone (Decadron) regimen in addition to radiation on the lesion on his spine to alleviate the tremendous pain. He could move better after each treatment.
When we began consulting for treatment that included stem cell transplantation, we learned that Dave had received “extensive radiation” and that this would make collecting his stem cells “difficult,” “arduous,” and “potentially problematic.” Great! Just great! When I mentioned this to the oncologist still in charge of our care, he blew me off completely. He said, “No, no, we weren’t radiating the ‘long bones,’ which is where most stem cells come from in collection.” That’s funny, his own attending physician from his residency whom he had referred us to, disagreed. Frustrating.
When we got to Little Rock, Arkansas for our consultation, I asked what they do when a patient comes in with lesions and tremendous pain. How do they shrink the lesions and reduce the pain? They said, “We simply start immediate treatment of the multiple myeloma. We never, never, ever, radiate someone who will be doing a transplant, and we have written numerous medical papers on why. It’s incredibly disappointing to us how many patients come here with radiation treatment. Don’t feel bad, you are not alone.”
A dear friend of mine in the horse business in Lexington contacted me and said to get Dave into hyperbaric oxygen treatment (HBOT) before his stem cell collection. Her farm was next door to an equine rehab facility. They had an HBO chamber for horses and had seen some pretty amazing miracles!
I was fascinated, and we had some very interesting discussions about the use of this alternative treatment therapy—from treating strokes to autism and brain injuries as well as the more understood and accepted treatment of fractures and open wounds.
When you are injured or have a wound, stem cells mobilize in your bone marrow, spill into the blood stream, and travel to the injury to heal it, like a little army. When a wound won’t heal, HBOT can step in and dramatically improve the outcome.
The horse rehab center sent me a paper from the University of Pennsylvania by Dr. Stephen R. Thom called “Stem cell mobilization by hyperbaric oxygen,” which was published in June 2005. I’m not a scientist, but the abstract and the conclusions were clear to me. Including 20 HBOTs for Dave would potentially increase his “stem cell mobilization” eight-fold.
I located a facility near where we live and contacted them for an appointment. When I mentioned it to the doctor in Little Rock, he shrugged and said, “Sure, if you want to do that, go ahead. I’m going to do the collection process the way I always do.”
Honestly, I didn’t really know enough about any of what we were embarking on to make these decisions with full confidence. I worked off what I learned, what made sense (to me), my instincts, and the most important part - HBOT wouldn’t hurt Dave.
In addition to mobilizing stem cells, HBOT can also help heal radiation damage. So it’s a twofer (two for one) as they say. I just couldn’t find the downside, except the out-of-pocket cost.
We decided to go ahead with it. The problem was, Dave was scheduled to begin treatment in Little Rock in mid-November, and it was October. We didn’t have a lot of time to get in 20 treatments, and he was back at work. It was exhausting for him to squeeze treatments in every single day to get the targeted 20. We ultimately only were able to get in 19 before we left for Arkansas.
The actual treatments were easy. He said that his ears would feel pressure, like while flying in an airplane. The chamber was clear, and he could watch TV during his 90 minute sessions. He would be ravishingly hungry when he was done, even though he would have eaten before he went in. Afterward, he was “hyper alert” mentally. Under ideal circumstances, these treatments would not be so condensed.
During the stem cell collection – for those of you who have not been through it – your immune system is wiped out with chemotherapy. Then you are given Neupogen (growth hormone) shots to help facilitate an overproduction of stem cells so that they spill out into your blood stream and are available for collection. When your white blood cell (WBC) count gets up to 2.0 or higher, they will run a special test called a “ProCOUNT” (CD34 on your labs), which is basically an estimation of how many stem cells you have in your blood for collection. One of the physical manifestations of this process for the patient is some pretty intense bone pain. The cells are building up in the bone marrow; they are jammed in there and are very overcrowded. This causes them to spill out into the blood stream to become available for the aphaeresis process used to capture them and extract them from your blood.
In Little Rock they don’t do the ProCOUNT until your WBC count is over 2.0, but Dave had been up all night in a chair with extra pain meds because of bone pain discomfort. We did not wait for our regular appointment in the infusion center but went in at 6:30 a.m.
Dave’s WBC count jumped from below 2.0 to over 13 during the night! They ran the ProCOUNT test, and Dave’s was at 50 million cells available for collection! The collection doctor said that in 20 years of doing this she had never seen anyone with his extensive radiation history with those numbers!
We were unable to get everything needed done to get the collection started that day. So more drugs, no more growth factor shots, and home we went for the night, ready to collect early the next morning. Overnight Dave developed a very high fever that was gone by the time we got in for collection. They scheduled his collection for only 45 minutes. Normally, collection is a number of hours spread over days.
In Little Rock, they always collect a second day in order to make sure that in case there is a problem, they have another collection. They try to collect enough cells for six transplants, which equates to 20 million cells, with an average of 3 to 4 million per transplant and 2 million the bare minimum. On the second day, they scheduled Dave for only 30 minutes of collection.
Over those 75 minutes, Dave collected 47 million stem cells (11 transplants worth). When they did a post collection ProCOUNT, he had 90 million cells still available in his blood stream for collection! His bone pain, which should normally ease immediately upon collection, was still uncomfortable. He jokingly begged them to please take out more and said they could throw them away and that he promised not to tell. Within about 24 hours, he was back to normal. All his cells were deemed “viable” for transplant.
I learned later that Little Rock began to experiment with its hard-to-collect patients by sending them to a nearby hospital for HBOT. What I learned was that if they had a patient who could only collect say 30,000 stem cells, after HBOT they were able to collect 300,000. This is still not enough for even one transplant. However, a patient who could collect 300,000 cells before HBOT might be able to produce around 3 million cells after HBOT, as the paper describes.
The more humorous part of this story is that I wrote to Dr. Thom at the University of Pennsylvania and shared with him our experience and results, thanks to his paper. He wrote me back and thanked me for the information. He then said, “This is exactly what our findings were, but we have very little human data.” What a crack up!
The HBO doctor recommended we do 20 treatments post transplants, therapeutically. We are planning to do this. It will presumably help with Dave’s fatigue and low WBC numbers.
I suspect that Dave would have collected enough stem cells over a week’s time, but there was no way for me to know that. All I knew was what I was told: that he would have problems due to his “extensive radiation” (around 12 treatments). The problem with this is you don’t really know if there will be a problem until you try to collect. We were proactive in our complimentary therapy in approaching this potential barrier. We believe there were other benefits, but it is candidly anecdotal.
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Now that's an HBO package I would subscribe to! Great article, Lori.
Sounds like I could have used hyperbaric oxygen therapy for my difficult, 12-day collection. Mayo usually doesn't use melphalan pre-harvest, just growth factor. But I'm not sure it would have mattered. Two weeks of radiation at several different locations on my spine, along with Revlimid induction, contributed to the difficult collection I'm sure. But I met several patients who couldn't collect at all while I was there. Hyperaric oxygen therapy might have helped them? Great article, Lori! Pat
Indeed. In some of my research it appears that it may not just be radiation that is detrimental to stem cell collection. What I am finding at the moment is early collection is advised and that the myeloma drugs and the radiation can impede the collection process. The cool thing about hyperbaric oxygen therapy is it is non chemical! Sadly also, "non covered" by insurance! Thanks Pat.
And Sean, I often wonder if it is a curse for people like you who have such a wonderful and amazing quick wit with words? I have a few friends who do this (generally keeping me in stitches), and I often wonder if they have to suppress the smirks and comments more often than not. You know, like the boss says something, or you are in a meeting, and this stuff flies into your head, but you have to keep it from flying out of your mouth! Could you elaborate? (Thanks Sean!)
Lori: It just seems that everywhere I turn recently, someone is either undergoing hyperbaric oxygen herapy or contemplating it. And then you write about an article about the topic and stem cell collection! Who knew oxygen was so popular?
- I met a multiple myeloma patient who had undergone a non-myeloma related radiation series and ended up with jaw damage. He thought it might be osteonecrosis of the jaw (ONJ), as he was getting Zometa infusions, but his docs finally diagnosed osteoradionecrosis (spelling?) (ORN) and prescribed hyperbaric oxygen therapy.
- An acquaintance of mine with diabetes had a leg wound that wouldn't heal properly. Hyperaric oxygen therapy helped his situation.
- And just this week, I was discussing hyperbaric oxygen therapy with a young Army veteran who was treated at Brooke Army Medical Center in San Antonio for burns he received in the Iraq campaign. But wait, there's more!
- I met a 40-something lady and her husband at a coffee shop and she had undergone hyperbaric oxygen therapy to help multiple sclerosis (MS) symptoms. My mother lived with multiple sclerosis for several years and we were discussing how the protocols have changed since the 1970s when my mom was diagnosed. Not sure how I start out getting coffee and end up talking MS.
Lance Armstrong and other athletes use them. Then again, Michael Jackson did, too. Thanks for contributing to my now-peaked curiosity about hyperaic oxygen therapy. Best to you and Dave!
Sean, you are indeed running into the very real use of hyperbaric oxygen therapy. There are several studies that suggest it can reverse stroke, and also studies that say no. In the clinic where we treated, they had a foundation set up to treat autistic children. And let's not forget the miner who survived in West Virginia being flown to University of Pennsylvania (probably Dr. Thom) for hyperbaric oxygen therapy to reverse the effects of the deadly gas exposure while he was in the mine.
The hyperbaric oxygen therapy doctor we met with (a left over hippie wannabe) told us if you knew what time you were having a heart attack you would schedule yourself in the chamber accordingly. Chuckles. And then you know, Dave has no evidence of his lesions (and he was covered in them) and his bones are in great shape as well. I often wonder if hyperbaric oxygen therapy helped all that, but no proof.
Well I'm glad that you have been having some interesting conversations about it. I don't know Sean, maybe its a sign?
Lori,
Hyperbaric oxygen could be used to mitigate complications from post cardiac surgical stroke. I believe Loma Linda University has studies to indicate it is neuro-protective, and scientific studies have looked at the basic science. It's my understanding that findings suggest it could be effective in many instances where the delivery of oxygen to tissue is inadequate or compromised for some reason.
The broad use of hyperbaric oxygen therapy is quite astounding when you begin to look into it. Like many worthwhile complementary or alternative treatment therapies, good science to back up the anecdotal are lacking. I was hopeful many years ago when NIH set up a CAM (Complementary Alternative Medicine) division to begin to do some research with federal funds, since there is no money in it for pharmaceutical companies to embark on such studies. It has been slow going and I imagine they are a bit like the ugly step child over there. I'm grateful to fine physicians like Dr. Thom at Penn who are making some inroads and bringing some legitimacy to the subject. Remember chiropractors and how they were viewed for so long? Now they are often a part of forward thinking, visionary medical institutions. It takes time for the status quo to not feel threatened by less invasive and less expensive means to better healthcare. In the meantime, we have to be vigilant and cautious as we participate outside the mainstream to better our own health opportunities. Thank you for your comment Tom to forward the discussion. And I'm grateful that the Beacon was willing to run the story.
Hi Lori,
Very interesting stuff, I know lots of us in the complementary health community have heard of hyperbaric oxygen treatment for a variety of things, but I myself had not even considered it as another tool for James and his multiple myeloma. I was too busy researching and putting together his massive supplement, herb, rehab, meditation, etc regime along with researching all the side effects of his drug treatment.
This is why we all need to share information, as when you're caught up in the heat of the battle it's impossible to cover every angle, while being a full-time caregiver, breadwinner, and everything else. As luck would have it we have a hyperbaric oxygen chamber down the street from our apartment!
Do you have any published research on hyperbaric oxygen chambers for transplant recovery? What was the guidance you received on Dave going post-transplant? James is 10 weeks post-transplant currently. Also, are there any known contra-indications on using the chambers concurrently while on chemotherapy?
Thanks!
Carlin,
It is indeed an information overload at times to be proactive outside of the mainstream medical intervention, to make them feel better and recover more fully.
I don't have anything in the way of science papers for transplant stuff. I think we were probably one of the first to use it for such treatment.
We were advised by the hyperbaric oxygen therapy doctor who runs the clinic in Sacramento to do 20 therapeutic treatments post transplant, anytime after 2 months. We haven't done it yet, but are planning too. Since Dave is on Velcade once a week, I avoid anything in a 24-hour window of the infusion. So I would do it on any day except that, but I have no data one way or the other of helping or hurting. I know it will help the fatigue as when he did it before he was "hyper" alert and active after each treatment (different than the dex energy and certainly without the "roid rage" component).
They are 90 minutes and were a 2.3 ATAs (atmospherics). Take the U of Penn paper with you to discuss. Getting more stem cells to be WBC, RBC and platelets would be the overall idea and boosting the immune system. All is conjecture of course.
My question when we talk to them will be, can they do it with Dave's iport in his clavicle?
All the best to you and James. Stay strong!
Lori
Thanks Lori!
Have been doing research today, and just wanted to clarify for people that there appears to be two grades of hyperbaric oxygen treatment, a therapeutic medical grade, and a reduced-intensity grade available more outside the medical establishment. The lower grade has lower oxygen and is not much higher than sea level pressures, so beware. You obviously got the higher grade medical level Lori, based on the pressure you described.
I'll be contacting the medical director of the center near us next week to hear his thoughts, interestingly hyperbaric oxygen therapy is covered by public healthcare here in Australia, but only for certain conditions, myeloma and transplant recovery not being one of them (surprise, surprise). But they do cover certain bone issues, infections, and those post-radiation treatment for cancer. I'll see what I can work out for James. Myeloma teaches you persistence if nothing else!
Will post anything I find out from my investigations down here in Sydney!
Wow, thank you Carlin! And do keep us posted on what you learn! Very cool bunch here at the Beacon!
Great Article! Any thoughts or information on how or if this treatment could be used for low hemoglobin counts? How lasting are the effects of this type of treatment? Thanks.
Hi Francesca,
It should help, but I don't know how lasting. It is our plan to do 20 therapeutic treatments for my husband to help boost his immune system (WBC, RBC, platelets) and assist in his overall recovery with fatigue. Many hyperbaric oxygen therapy centers have physicians who are a part of the center, and they can offer research behind the benefits.
Good luck, and if you find anything, please do share!
Hello Lori, I am the horse rehab guy in Kentucky who sent the information. I just wanted to say I am very happy to hear your husband was helped by the recommendation. It will always amaze me that this wonderful medical treatment is so overlooked by the human medical establishment. We have been very fortunate to have helped so many horses and dogs, of coarse, but along the way it seems there have been a lot of people who have benefited from us treating so many animals and spreading the gospel of hyperbaric oxygen therapy, so to speak. I have dedicated the past fifteen years on hyperbaric oxygen therapy and I hope everyone who reads this will take a minute and do a bit of self educating online because some day it might be of great value to themselves or a loved one. Best Regards
Hey Friend! Quite a fun story really. "Lori, how did you know about HBOT? Well you see, I have this friend in Kentucky, whose farm is next door to an equine rehab center, and I had the lovely opportunity to tour their amazing facilities where they have a hyperbaric oxygen chamber for horses (!) and when they heard about Dave ..." and so it goes. You guys are amazing in all that you do, and I hope we can meet up and have a celebratory lifting of the glass when I come out next! Thanks for doing your part to beat the drum!
We had many people who asked us if Insurance paid for our HBOT.
I find this disheartening on two fronts. One, the idea that some aren't willing to pay something for their own healthcare, and two, that insurance doesn't consider it in the realm of helpful and bonafide medicine. So while I wish that insurance would have helped, even if not fully, it was not dismissed by us just because they wouldn't. We are not on a fixed income either. We can, and did, make adjustments.
In the old days we had to pay for chiropractor visits ourselves and we did. Today, dental insurance will only pay for two cleanings a year, but some of us need more, and we pay.
So I hope that people will at least explore the possibilities of complementary therapies that they believe will be helpful to them and not dismiss them without further investigating, just because they are not covered by insurance.
(There were patients at my husband's myeloma center who paid for their second stem cell transplant out of pocket because Medicare won't cover them. Now THAT is a bill to confront! I would not be in a position to do that, but I might be inclined to do a fundraiser or ask for donations.)
We are far from healthcare "utopia" and utopia has its own pitfalls, but I wouldn't mind getting a bit closer to that ideal scene.
Thanks to all for adding to my armamentarium. Especially after I had 4 "dry taps" of my marrow. Thank you Lori for spreading the word. I have yet to start therapy and I am still screwing up courage and waiting for my oncologist's decision. All of you have good insight into the disease and your articles are superb. Keep it up!!! Thanks again, Barry.
Barry, first get yourself stable and your pain managed. Take some time to decide how you would like to address your disease. Get differing opinions in approach, not to confuse you, but so that you learn more. Understand that you won't be able to know all that you need in order to start. You will learn as you go. But you can learn enough to make a good decision for you.
Remember that it does take courage, but you must go through it in order to come out the other side. It's easy for me to tell you now that we are through it, to not be afraid, but I remember all too well how scary it all was. The good news is, that many others have gone before you and managed to come out the other side. You are forever changed no matter what, the minute you get the diagnosis, your life as you knew it will be different. The trick is to get the idea that in many ways it can be better. Physically you can recover, and yes it takes a long time, but spiritually and mentally you can be better than you ever thought possible. Good luck with everything.