I finally got the results of my 20 month post-transplant PET scan - mostly clear, although the hot spot on my shin is still there. It showed up last fall, and after a long series of biopsies, tissue removal, tests and re-tests, they determined that even though it had some lymphocyte cells (what they look for in lymphoma masses) they were insufficient for a positive result. That spot on my shin aches a lot, and I get muscle spasms in that area, so I have no idea what it is, but since it doesn't appear to be getting worse, and other hot spots aren't appearing elsewhere, I guess I'll just think of it as an anomaly for now.
My next test is in Oct. and there will be quite a few, since that will be the 2-year post-transplant milestone evaluation, and it's considered significant.
Friday, June 22, 2012
Wednesday, June 20, 2012
Status Update: June 20, 2012 (20 month post-transplant PET scan)
I saw my new Oncologist - Dr. Mehrotra - Monday, and she scheduled me for a PET scan today (done this morning). The Humphrey Cancer Center is very nice in that it is right across the hall from an Imaging department that has a PET scan device. In Arizona I used an independent company (Radiology Limited). They had quite a few imaging centers in Tucson, but only 2 of them had PET scan equipment. If they had trouble accessing a vein to inject the glucose solution for the test, you'd have to reschedule and go to your Oncologists office first to have your port accessed, then return their after, to have it de-accessed.
They had trouble accessing an arm vein today, but I just had to go across the hall to have my port accessed. There was a mix-up on the order and my sedative wasn't included, but I managed it okay without it - I think I've learned enough coping skills to get through that hour in the tube, also their PET scanner was designed a little differently (shorter, wider tube) and that seemed to help reduce claustrophobia as well.
Generally I have 3-4 PET scans a year, but my last one was in Jan. so I'm late on this one. The next one will be during my 2-year post-transplant milestone testing in Oct. I should get the results for today's scan from my Oncologist tomorrow or Friday, and will post an update then.
They had trouble accessing an arm vein today, but I just had to go across the hall to have my port accessed. There was a mix-up on the order and my sedative wasn't included, but I managed it okay without it - I think I've learned enough coping skills to get through that hour in the tube, also their PET scanner was designed a little differently (shorter, wider tube) and that seemed to help reduce claustrophobia as well.
Generally I have 3-4 PET scans a year, but my last one was in Jan. so I'm late on this one. The next one will be during my 2-year post-transplant milestone testing in Oct. I should get the results for today's scan from my Oncologist tomorrow or Friday, and will post an update then.
Wednesday, June 13, 2012
Status Update: June 14, 2012 (limb transplants via stem-cell transplant)
I heard something interesting recently. Apparently researchers are working on limb-transplants using an autologous stem-cell transplant to avoid tissue rejection. Take it with a grain of salt, because I've seen no verification of this, but here's how it would work in theory.
Say a soldier loses his arm in combat (and the lost limb cannot be reattached), and a recently-deceased person has left their body for medical research and/or organ donations. Transplants like this have not been done in the past because the chance that the recipients body will reject this foreign tissue is almost 100%. Apparently they are now working on this very scenario, but with a follow-up treatment of an autologous stem-cell transplant. The assumption in the technique described below is that the limb transplant is done first, followed by the stem-cell transplant.
As I discussed in my transplant basics page, an autologous stem-cell transplant is when the transplant recipient is their own donor. This is the kind of transplant I had. The recipient receives two kinds of injections for several days and these injections do 2 things: 1) Accelerate the growth of stem cells in your bone marrow, and 2) Allow the stem-cells to release from their bone-marrow mooring and make their way into your blood-stream in their immature, stem-cell state (i.e. before they become white blood cells, red blood cells and platelets, etc.).
After about a week of these injections an Aeferesis line (aka Hickman port) is installed in your chest leading into a major vein. Two ports reside outside the chest, for withdrawal of blood and simultaneous return of it. Kidney dialysis patients use a system like this. During a 4-hour visit to the Red Cross, the Aeferesis line is used, in conjunction with a centrifuge, to withdraw blood, separate out the heavier stem-cells, and return the rest. One session may be enough to collect the necessary amount for a stem-cell transplant, although in some cases two or more sessions may be needed. The collected stem cells are refined and processed, then frozen for use during the transplant.
The next step is to expose the patient to high-dosage chemo and radiation, in order to kill off their existing immune system. When that's complete, the stem-cell transplant takes place. The stem-cells are thawed at the patient's bedside and reintroduced by infusion through an IV drip. This generally takes no more than 2-3 hours.
For cancer patients, the killing off the immune system is necessary to erradicate the existing blood or auto-immune disease (like leukemia or lymphoma). This is not why it's done for limb transplants, though. The old immune system would see the transplanted limb as foreign tissue and send out anti-bodies to fight it, resulting in tissue rejection. The new immune system, however, may see the already attached new limb as not foreign - since it's been there 'all along' (from the point of view of the new immune system).
I'm not sure where they are in this research, but I'll be watching to see if there are any new updates in this new technology. It's a very interesting, idea, though, and takes stem-cell usage up to a whole new level.
Say a soldier loses his arm in combat (and the lost limb cannot be reattached), and a recently-deceased person has left their body for medical research and/or organ donations. Transplants like this have not been done in the past because the chance that the recipients body will reject this foreign tissue is almost 100%. Apparently they are now working on this very scenario, but with a follow-up treatment of an autologous stem-cell transplant. The assumption in the technique described below is that the limb transplant is done first, followed by the stem-cell transplant.
As I discussed in my transplant basics page, an autologous stem-cell transplant is when the transplant recipient is their own donor. This is the kind of transplant I had. The recipient receives two kinds of injections for several days and these injections do 2 things: 1) Accelerate the growth of stem cells in your bone marrow, and 2) Allow the stem-cells to release from their bone-marrow mooring and make their way into your blood-stream in their immature, stem-cell state (i.e. before they become white blood cells, red blood cells and platelets, etc.).
After about a week of these injections an Aeferesis line (aka Hickman port) is installed in your chest leading into a major vein. Two ports reside outside the chest, for withdrawal of blood and simultaneous return of it. Kidney dialysis patients use a system like this. During a 4-hour visit to the Red Cross, the Aeferesis line is used, in conjunction with a centrifuge, to withdraw blood, separate out the heavier stem-cells, and return the rest. One session may be enough to collect the necessary amount for a stem-cell transplant, although in some cases two or more sessions may be needed. The collected stem cells are refined and processed, then frozen for use during the transplant.
The next step is to expose the patient to high-dosage chemo and radiation, in order to kill off their existing immune system. When that's complete, the stem-cell transplant takes place. The stem-cells are thawed at the patient's bedside and reintroduced by infusion through an IV drip. This generally takes no more than 2-3 hours.
For cancer patients, the killing off the immune system is necessary to erradicate the existing blood or auto-immune disease (like leukemia or lymphoma). This is not why it's done for limb transplants, though. The old immune system would see the transplanted limb as foreign tissue and send out anti-bodies to fight it, resulting in tissue rejection. The new immune system, however, may see the already attached new limb as not foreign - since it's been there 'all along' (from the point of view of the new immune system).
I'm not sure where they are in this research, but I'll be watching to see if there are any new updates in this new technology. It's a very interesting, idea, though, and takes stem-cell usage up to a whole new level.
Tuesday, June 12, 2012
Status Update: June 12, 2012 (Robin Roberts)
This isn't about me, but it is about the transplant process. Many if not most of you have probably seen the news story this week about the journalist and Good Morning America Anchor, Robin Roberts, who was treated for breast cancer and as a result of that treatment, developed a secondary disease called Myelodysplastic syndrome (MDS). This is a disease of the blood and bone marrow that used to be known as preleukemia and like all other related blood diseases affects your immune system.
What many people don't realize is that cancer survivors often die from another form of cancer, and often that cancer occurs as a result of their previous cancer treatments. For example, getting high doses of radiation to kill a mass tumor cancer can result in skin cancer. Sometimes these secondary diseases happen shortly after the treatment, sometimes they take decades to manifest themselves. If you're a cancer survivor who experiences this secondary disease decades after your original treatment, during your older years, you're lucky.
Robin's MDS appears to have manifested itself pretty quickly after her breast cancer treatment. Apparently her immune system was negatively impacted by the original treatment she received and is now comprised. To fix this problem they're going to kill off this faulty immune system and attempt to give her a new one. The method they're going to use to do this is a bone-marrow transplant. If you read the Basics page of my blog, I'll have discussed this in detail, but to summarize: Stem-cell and bone-marrow transplants are two different methods which accomplish the same thing - kill off a blood-related disease and regrow a new immune system.
Because Robin's immune system is already compromised, she will need a donor with an uncompromised immune system. Luckily her sister is a perfect match, so that the chance for tissue rejection is very low. The immune system is the organ of your body that recognizes which pieces belong and which don't. If it sees something 'foreign' to it, it sends out antibodies like white blood cells to attack the foreign object (like killing a virus).
Robin's sister will undergo an in-patient treatment under general anaesthesia where they will remove 1-2 liters of bone marrow (generally from her hip bones). The bone-marrow fluid removed will be refined and processed and then frozen for Robin's transplant. Directly after this step, Robin will undergo high dosages of chemo and/or radiation to kill off her immune system and the MDS inhabiting it. When that is complete, her sister's donated fluid will be put into Robin by a simple transfusion. The frozen bags will be thawed at her bedside and then infused via an IV drip.
The actual transplant process will be done in 1-3 hours in all likelihood. The stem cells from the refined bone-marrow donation will find their way back to their homebase (into the bone marrow) where they will begin to rebuild a new immune system, maturing into white blood cells (to fight infections), red blood cells (to transport oxygen) and platelets (to clot injuries). In 2-3 weeks, if all goes well, Robin's blood numbers (done via a CBC - comprehensive Blood Count - test) will rise from zero (in most cases) to their healthy levels, indicating the growth of a new immune system is underway. This process will take 1-2 years to be completed, just like with a new infant, however once the CBC numbers are high enough, the rest can take place as an out-patient.
In a perfect world this treatment would work and Robin's MDS would be irradicated. Hopefully that's the case. Unfortunately Robin will have to undergo additional chemo and/or radiation during the transplant, and that's another dangerous link in the chain. Who knows what the future holds in her particular case, but hopefully it will be a good outcome. The one thing we do know is that the medical community has made big advancements in the diagnosis and treatment of various forms of cancer and auto-immune disorders in the last century, and will continue to do so during this one. I have no doubt that the risks associated with bone-marrow and stem-cell transplants will continue to diminish as science advances and medical researchers identify new treatments and focus in on ideal mixes and doses. My thoughts are with Robin as she enters this new phase of treatment.
What many people don't realize is that cancer survivors often die from another form of cancer, and often that cancer occurs as a result of their previous cancer treatments. For example, getting high doses of radiation to kill a mass tumor cancer can result in skin cancer. Sometimes these secondary diseases happen shortly after the treatment, sometimes they take decades to manifest themselves. If you're a cancer survivor who experiences this secondary disease decades after your original treatment, during your older years, you're lucky.
Robin's MDS appears to have manifested itself pretty quickly after her breast cancer treatment. Apparently her immune system was negatively impacted by the original treatment she received and is now comprised. To fix this problem they're going to kill off this faulty immune system and attempt to give her a new one. The method they're going to use to do this is a bone-marrow transplant. If you read the Basics page of my blog, I'll have discussed this in detail, but to summarize: Stem-cell and bone-marrow transplants are two different methods which accomplish the same thing - kill off a blood-related disease and regrow a new immune system.
Because Robin's immune system is already compromised, she will need a donor with an uncompromised immune system. Luckily her sister is a perfect match, so that the chance for tissue rejection is very low. The immune system is the organ of your body that recognizes which pieces belong and which don't. If it sees something 'foreign' to it, it sends out antibodies like white blood cells to attack the foreign object (like killing a virus).
Robin's sister will undergo an in-patient treatment under general anaesthesia where they will remove 1-2 liters of bone marrow (generally from her hip bones). The bone-marrow fluid removed will be refined and processed and then frozen for Robin's transplant. Directly after this step, Robin will undergo high dosages of chemo and/or radiation to kill off her immune system and the MDS inhabiting it. When that is complete, her sister's donated fluid will be put into Robin by a simple transfusion. The frozen bags will be thawed at her bedside and then infused via an IV drip.
The actual transplant process will be done in 1-3 hours in all likelihood. The stem cells from the refined bone-marrow donation will find their way back to their homebase (into the bone marrow) where they will begin to rebuild a new immune system, maturing into white blood cells (to fight infections), red blood cells (to transport oxygen) and platelets (to clot injuries). In 2-3 weeks, if all goes well, Robin's blood numbers (done via a CBC - comprehensive Blood Count - test) will rise from zero (in most cases) to their healthy levels, indicating the growth of a new immune system is underway. This process will take 1-2 years to be completed, just like with a new infant, however once the CBC numbers are high enough, the rest can take place as an out-patient.
In a perfect world this treatment would work and Robin's MDS would be irradicated. Hopefully that's the case. Unfortunately Robin will have to undergo additional chemo and/or radiation during the transplant, and that's another dangerous link in the chain. Who knows what the future holds in her particular case, but hopefully it will be a good outcome. The one thing we do know is that the medical community has made big advancements in the diagnosis and treatment of various forms of cancer and auto-immune disorders in the last century, and will continue to do so during this one. I have no doubt that the risks associated with bone-marrow and stem-cell transplants will continue to diminish as science advances and medical researchers identify new treatments and focus in on ideal mixes and doses. My thoughts are with Robin as she enters this new phase of treatment.
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