My next clinic appointment is on Friday 13th April (hope that is not a bad omen) and I will get the results of my blood tests which I had done yesterday. I have the serum light chain test to measure my kappa light chains (which in my kind of myeloma were the ones that were abnormally high, over a 1000 when I was diagnosed, the normal range being around 3 to 19) and the results normally take about a week to come through.
Post transplant I have a clinic appointment once every 3 months when I see a haemotology consultant and have a light chain blood test so they can monitor my light chains. In addition I have a bone strengthening treatment called Zometa once a month ( I need it after all the falls I have been having!). In terms of medication all I have to take is Calcichew which is a calcium and vitamin D supplement. I choose to take a vitamin B supplement, cod liver oil and turmeric capsules.
I am starting to feel anxious.
I am now 7 months post autologous stem cell transplant (autologous means my own stem cells). Day zero to me was 1st September 2011. They call it day zero because that is the day that your immune system is rescued having had a huge dose of chemotherapy the day before called Melphalan*. If I hadnt got the infusion of the stem cells back on day zero then I would have died!
The idea of the procedure is to kill off any residual myeloma following treatment and then to rescue my immune system with my previously collected baby stem cells. Light chain tests I have had since then show my kappa light chains were within normal range so thats great news and I hope it continues as long as possible. They have slowly risen since my transplant but are still within the normal range.
If the myeloma comes back within 12 months of my transplant I believe the transplant is considered to be a failure and although I have more stem cells stored in a freezer (not my freezer!), I wouldnt be offered another one because the first one didnt work. I would have more treatment to knock back the myeloma and then be offered a transplant from a donor.
Shortly after my transplant and actually even before it my consultant was recommending that I have a further stem cell transplant within 6 months of my first one. A different type of transplant called a reduced intensity conditioning transplant or a mini allogeneic one. With this one you have less chemo but the stem cells are from a donor, the idea being to give you a new immune system. There is a significantly higher risk of dying, a longer period of recovery and potential long terms problem caused by chronic graft v host disease. The perfect donor is your sibling, but unfortunately my brother and sister werent a match (there is only a one in four chance of a sibling being a match). After that then a matched unrelated donor is searched for via the Anthony Nolan Register, more of which later on. I was told that the aim of this transplant in tandem with the auto is to prolong remission for as long as possible in younger fitter patients. I was also told that I had a chromosomal abnormality which meant that I was more likely to relapse earlier. I was shocked to be given this news and didnt feel like celebrating the fact that I had a very good partial response to my transplant as I had a decision to make about having another transplant.
After lots of deliberation I decided to have the mini allo only to find out that there was only 1 potential match on the bone marrow register (that was by analysing his saliva sample) and when his blood sample was tested he was only a 7 out of 10 match in terms of tissue typing. My consultant did not consider that was a good enough match to go ahead with the transplant (only 10/10 would do). So after all that it couldnt go ahead and I felt a mixture of relief and disappointment. Having initially told me I had quite common tissue typing, my consultant said on closer anaylsis it was quite rare and I have since found out that out of 26 million donors on the register world wide, only that one was a potential match for me. Naturally I feel quite despondent about the chances of someone new coming onto the register that would be a match for me. So this puts me in a situation where if I relapse before 1st September 2012 then I have no options other than treatment which I am or have been extremely sensitive too. So not only am I a sensitive type, I am also an extremely rare type!
So my mission is to spread the word about the Anthony Nolan trust and get everyone I know who is over 18 and under 40 (which isnt many) to register online and then send off some saliva. If you know anyone or are eligible yourself please check out their website
Anthony Nolan is a pioneering charity that saves the lives of people with blood cancer who need a blood stem cell, or bone marrow transplant. In 1974, Anthony Nolan’s mother, Shirley, set up the world’s first bone marrow register to match donors with people who desperately needed a transplant.
Now, every day, we help two people in need of a lifesaving transplant by using our register to find remarkable donors who have matching stem cells, or bone marrow.
We are a UK charity with international reach. We carry out world class research into stem cell matching and transplants to improve outcomes for all patients.
We’re passionate about saving lives. It’s something we have in common with our donors, who regularly tell us that it’s the most rewarding thing they’ve ever done.
For someone with a blood cancer, a stem cell transplant may be their only hope of recovery. We make sure that when we do find a match, we’ve done everything to ensure the procedure is a success. That’s why we have such strict criteria for potential donors, in terms of general health and medical history. To help us work out if you’re suitable, please fill out our application form. It takes less than 10 minutes to apply.
Are you fit to spit?
As I am 50, I have decided to try and recruit 50 people to join the register this year, its not many but its better than none. It costs the trust £7.00 to arrange for the person to go on the register, collect the saliva sample etc and I have decided to donate £7 to the trust for each person I have or my friends on my behalf have managed to recruit so if you do manage to get anyone to register let me know.
In the meantime I will try not to worry, I am looking after a friend’s dog, Lottie pictured below, this week which will be a great distraction, can eat alot of chocolate over the weekend as it is Easter, will enjoy spending time with my family, including my gorgeous and extremely entertaining 5 year old niece and hope I get good news next Friday.
*Melphalan hydrochloride (trade name Alkeran) is a chemotherapy drug belonging to the class of nitrogen mustard alkylating agents. The nitrogen mustards are cytotoxic chemotherapy agents similar to mustard gas. Although their common use is medicinal, in principle these compounds can also be deployed as chemical warfare agents. Nitrogen mustards are nonspecific DNA alkylating agents. Nitrogen mustard gas was stockpiled by several nations during the Second World War, but it was never used in combat. As with all types of mustard gas, nitrogen mustards are powerful and persistent blister agents and the main examples (HN1, HN2, HN3, see below) are therefore classified as Schedule 1 substances within the Chemical Weapons Convention. Production and use is therefore strongly restricted.
During WWII nitrogen mustards were studied at Yale University and classified human clinical trials of nitrogen mustards for the treatment of lymphoma started in December 1942. Also during WWII, an incident during the air raid on Bari, Italy led to the release of mustard gas that affected several hundred soldiers and civilians. Medical examination of the survivors showed a decreased number of lymphocytes. After WWII was over, the Bari incident and the Yale group’s studies eventually converged prompting a search for other similar compounds. Due to its use in previous studies, the nitrogen mustard known as “HN2″ became the first chemotherapy drug mustine.