This journal records the story of “Harvey” as he goes through an umbilical cord blood mini-allo stem cell transplant that he hopes will get the CLL monkey off his back once and forever.
If you are a new reader to this journal, you may want to read earlier installments of this story by visiting our website www.clltopics.org. We have been using the story of this strictly hypothetical patient as an educational experience for our members. I am told there is an uncanny resemblance between Harvey and my husband PC but you understand I cannot possibly confirm or deny that!
A quick synopsis: Harvey was diagnosed with an aggressive form of chronic lymphocytic leukemia (CLL) almost seven years ago, in the summer of 2001. CLL is considered an indolent cancer and for some lucky patients it may not need treatment for many years. For others, like Harvey, it can prove aggressive and stubbornly resistant to therapy. It became clear pretty early in the game that Harvey was not going to be able to run the clock out on this disease. He was too young at diagnosis, a mere callow lad of 52, to employ the conventional approach as a long term strategy. He was too young to go down the slippery path of ever more aggressive chemotherapy regimens with increasingly poor quality remissions. Chances were slim that with his Bucket C prognostics Harvey would realize his ambition of dying of respectable old age someday just by using the chemotherapy cocktails available to us right now. This is the reason why CLL is still considered an incurable cancer. If he had less aggressive disease or if he had been significantly longer in the tooth, it might have been a good game plan to just ride out the disease and hope to kick the bucket before the cancer got him first. But our hero needed to develop Battle Plans for the long haul.
Frankly, the only demonstrable cure for CLL right now is an allogeneic stem cell transplant – getting rid of the patient’s cancerous immune system and replacing it with a brand-new and healthy immune system from a suitable and healthy donor. If you are a computer geek, think of this as getting rid of buggy software that is not doing the job right and rebooting your computer with brand new software without glitches. Autologous stem cell transplants (where the stem cells come from the patient himself) are not thought to be curative. Sooner or later, most patients who undergo this procedure relapse and they are back to square one with the CLL. Intuitively, it kind of makes sense. It is hard to get rid of the cancer without throwing out the rest of the corrupted immune system that allowed the cancer to flourish in the first place. But nevertheless in some situations autologous stem cell transplants may be the right choice in prolonging life. It all depends on the specifics of the case.
Allogeneic stem cell transplants replace the corrupted immune system of the patient with a brand new and healthy one from a donor. That brings up the important question of finding a suitable donor. It is not a trivial exercise to find a willing and able donor that is also a good match to the patient. Sibling donors are the first choice. If you have CLL and you may be in the market for a stem cell transplant sometime in the near future, remember to be very nice to your brothers and sisters. One of them may have an immune system perfectly matched to yours and that may make all the difference to you. You can read all about matching by reading the article on our website titled Matching Made Simple.
Sometimes, even loving brothers and sisters may not match the patient, not enough for a safe transplant. The next best option is to look for a Matched Unrelated Donor (MUD). It is wonderful to know that there are good and kind people out there, good Samaritans that will go the extra mile out of their way to help a total stranger combat his CLL or other life-threatening disease. The larger the pool of potential registered donors, the better the chances that a given patient will find a good match. But if the patient has exotic ethnicity and his particular “tribe” is not well represented in the donor pool, chances are poor that a suitable MUD match will be there for him.
Many patients make the crucial mistake of not initiating a MUD search soon enough and underestimate the difficulties involved in this process. Harvey did not make that mistake. Since he had no suitable sibling match, pretty early in his career as a cancer patient he initiated a world-wide search through all the donor banks for a potential MUD. Unfortunately, there was no MUD option available to Harvey. Not even close. Talk about your one-of-a-kind guy, they must have broken the mold after he was born. Bummer!
That left our hypothetical hero only one option as a potential source of blood stem cells: umbilical cord blood. Using stem cells from cord blood for transplanting pediatric cancer patients have been done for more than a decade now. But kids are much smaller than adults and the relatively small number of hematopoietic (blood) stem cells available in cord blood is enough to transplant kids safely. Back in 2004 when Harvey and his equally hypothetical wife “Serena” first started looking at cord blood stem cell transplants for adult patients, the technology was in its infancy. The statistics were truly scary, not too many patients survived after going through cord blood stem cell transplant in those early years. Back then, it was definitely a case of the cure being worse than the disease.
The message was clear: Harvey was going to have to play a very careful waiting game. He would be waiting for the cord blood transplant technology to come up the learning curve. And while he waited, it was important that he kept himself in good shape, because patients who were generally in good shape (other than having CLL!) had far better chances of surviving the transplant process. It was also important not to wait too long, to the point where his CLL became refractory. Refractory CLL leaves patients with few choices to bring their tumor burden down sufficiently before the transplant. It is important to have as few cancer cells in your body as possible before the transplant. As you can understand, it is important to give the new immune system coming in a chance to get settled down, before it has to face hordes of cancer cells on a rampage. Waiting too long may take away therapy options for getting the bad guys under control prior to the transplant. On the other hand, using up heavy-duty chemotherapy bullets too early in the game is not good strategy either. And many of these drugs are not exactly easy on the old body. Some of them can be downright toxic to important organs like the heart, liver, kidneys, lungs, etc.
After seven years of managing the delicate balancing act of not being too aggressive and at the same time not being too timid in controlling his CLL, Harvey and his wife Serena have decided that the time has come to start his cord blood stem cell transplant. For the past year or so, Harvey has worked with chemo-immunotherapy combinations to get the best possible remission he can get prior to the transplant. Frankly, it has been a bit of a close call, and trying to get the coveted “CR” (complete response) ahead of the transplant was no walk in the park. But his remission now appears as good as it is going to get in his case and there is no time left to dither. It is time for Harvey to get in touch with his “inner child”, become a healthy person once again thanks to the gift of umbilical cord blood stem cells from some wonderful baby whose parents chose to donate the cord blood after the birth of their child.
Cord blood transplants have some unique features, some advantages and some disadvantages, compared to transplants done using adult stem cells (sibling or MUD). However, there are many issues that are common to all blood stem cell transplants. All transplant protocols must grapple with maximizing graft-versus-leukemia (GVL), minimizing graft-versus-host-disease (GVHD), minimizing treatment related mortality (TRM, or what I like to think of as “death by therapy”) and last but not least, avoiding a relapse of the original cancer after all is said and done. The lessons learned in adult sibling and MUD transplants have helped cord blood transplants come up the learning curve and the other way around as well.
Dear reader, I promise to report the facts faithfully, neither sugar-coating the issues nor looking to sensationalize possible downturns in Harvey’s journey down this road. If things turn south, I will not leave you hanging with no clue of what happened. If, as I fervently hope, Harvey comes through this process with a clean new immune system and no trace of CLL, I promise you will be the first to know, and we will celebrate together. Every patient who wins this battle has won a victory for all of us.
On your part, you must realize that these journal entries may not always be inspirational or fun stuff, there may be rough patches that will be far from soothing bedtime reading. I am not a physician or psychologist, nor am I qualified to give you medical advice. I am an interested layperson reporter − but more than that I am a patient spouse and in that sense I walk in your shoes. As for my educational background, you can read about it on our website: Chaya’s Research Credentials. I have no desire to practice medicine without a license and I certainly do not aspire to be a “cancer guru”. I strongly advice you to seek professional help from your own medical team before you make therapy decisions for yourself. CLL Topics is a labor of love. We are all volunteers here. None of us have any links to companies or other organizations connected with the health care industry; neither I nor anyone else associated with this effort makes a single dime from it.
A few words about the art work used in this journal are in order. The changing banners at the top of the journal are cropped versions of photographs. Many of these were taken while Harvey and his faithful dog “EGCG” hiked the hundreds of miles of trails around their home in Sedona, Arizona. Eventually, we plan to have a page of thumbnails from which you can display high resolution versions of the photographs if you wish. Of course the material is only for your own personal use since it is subject to copyright.
If you are an existing member of our CLL Topics community, you know what we are all about. If you are a new visitor, we welcome you and hope you find this journal and the parent website www.clltopics.org to your liking. If this journal succeeds in helping even a few transplant patients in their own journey down this complicated and scary road, I will be content. As always, your thoughtful feedback is both welcome and deeply appreciated.