I finally got discharged on Tuesday despite itching to go home on Sunday. My neutrophil counts were above 1 Sunday, so I was hoping the doctors would let me out the next day at least. Only it wasn't to be... I think, due to the state I had been in only a week earlier, they wanted to keep me in until the consultant said it was ok for me to go. They were also concerned about whether my platelets were able to keep themselves above 50 whilst I am on Tinzaparin for the new clot in my neck. So they needed reminding that I have a good relationship with my local hospital and can go for bloods there if needs be, so it would be nice if I could go home!
On Tuesday, I did have a consultation with my radiotherapy consultant before finally escaping! Apparently, usually I'd have my Stem Cell Transplant talk before the radiotherapy talk to ease me into things, but because there isn't a huge amount of time between now and my stem cell everything got reordered a bit. As a result, the radiotherapy consult seemed a bit full on, with a lot of information on how the radiotherapy will work and all the lovely side effects that go with it!
On Wednesday, after a lovely night in my own bed, Phil very kindly took me back up to the Marsden for my Stem Cell Transplant consultation, and repeat bloods. The consultation was fairly standard, and didn't really tell me anything I didn't already know. But for the benefit of all you lovely people I will try and give you a run through of what the next stage will entail! This link is also very good for additional information, and runs through the procedure nicely.
Firstly, my amazing donor is female, 31years old, Welsh and with a blood group of A- (this is only really of interest because this is what my blood group will change to after the transplant!). On Monday, I have my radiotherapy planning session at the Marsden where they run through what will happen with the treatment procedure, place little dot tattoos on my upper body to help them align me correctly for each treatment, and have a CT scan to double check the alignment for the treatment and the amount of radiation exposure I will be receiving.
On Wednesday, I have another kidney function test like I had at the very beginning of all my treatment and prior to my Flag-IDA cycles. I also have more blood tests. I don't have to have another MUGA (heart function) test luckily as I had the echo at the Royal Brompton. However, I may have to go back there for a trans-osoephageal echo as they found that I have mild mitral regurgitation. This means that I have a tiny leak in the valve between the two chambers in the left side of my heart. For all we know this could have always been there and it's just an incidental finding, as I don't have endocarditis (where the bacteria affect the heart valves). I have also never been found to have a murmur, nor has it affected me, so I'm not really sure what they intend to do about it (if anything!).
On Thursday, I am being admitted super early for my Hickman line to be placed, my PICC line to be removed and a bone marrow to be performed. (Not a full-on day whatsoever...). And then on Friday, I'm back at the Marsden for them to check the line site, flush the lumens and change the dressing.
The following Tuesday I have a lung function test at the Royal Brompton (and hopefully the second echo!). And then I'm due to be admitted for the beginning of my Stem Cell Transplant procedure on Saturday 22nd August. That day I also receive the high dose chemotherapy - Etoposide 60mg/kg IV undiluted over 4 hours. Standard chemo side effects with this - nausea, vomiting, mucositis, hair loss, gut changes, fatigue, infection, tiredness, lethargy etc. etc. All this to look forward to! Then the Sunday I have a rest day! Lucky me! Apparently if the chemo doesn't affect me too much, I may even be allowed out on day release!
Then the Monday the fun starts with the radiotherapy! 2 sessions a day, 50mins (from set up to finish) each session, for 4 days at 9am and around 4pm. Early side effects include: swelling of the face (like mumps), redness of the skin, diarrhoea, abdominal pain, nausea and vomiting, mucositis and sore mouth, loss of taste, hoarseness of voice; late side effects include: hair loss, somnolence syndrome (tiredness, irritability, and loss of appetite), pneumonitis (NOT pneumonia - inflammation of the lungs); long term side effects include: cataracts (in fact 1 in 2 patients may end up with them in the long term), infertility (as aforementioned), hormonal changes including, hypothyroidism, second cancers (2-5% of patients within the next 10-20years), risk of infection (if the spleen is affected), cadiovascualr problems (slight increase risk of heart attack and stroke). So yes, the list is fairly full on, but the benefits far outweigh them!!
On my last two days of radiotherapy (26th and 27th), I receive a drug called Campath, which apparently "if I'm going to react to anything, this will be it!", as it is of animal origin and so the body straight away has a hissy fit about it not even being human. This can result in fever and rigors mainly - oh yay, the same as with an infection! However, they do predict this and give antihistamines and other drugs to reduce the reaction people inevitably have thank goodness! The second dose is better though apparently as by then the body has adjusted usually. The drug is an immunosuppressant to help the body prepare for receiving the transplant so that the stem cells aren't rejected. I also start Cyclosporin on the 27th (1.5mg/kg over 2hrs IV BID), another immunosurppressant to also help the body prepare for transplant. My donor over these two days will be donating her stem cells peripherally, which means she will essentially give blood, where it will processed to separate off the stem cells and then the remainder returned to her, until a minimum number of stem cells are collected. I then receive the fresh stem cells on 28th August, and so the waiting game begins! I am then put in isolation (so only allowed family and Phil to visit) until my counts have completely fallen to 0 again, and then begin to come back up. I have regular tests to check for certain viruses that I have been exposed to before to assess whether they are reactivating or not when my bone marrow gets obliterated, so they can medicate me to prevent them from causing a problem. I also, as usual, get daily blood tests to check my blood levels, so that I can receive blood products should I need them, and to see how my white blood cell count is doing, and also to check the cyclosporin levels in my body. Once my count goes over 0.5, I'm out of isolation, and then just have to wait to fully recover before I'll be discharged.
Side effects can continue for 3-4 months, and I may have some aspects of 'normal' life back from Christmas. However, this varies greatly between patients. At first, it will be very similar to how things have been lately, with the need to avoid crowded places, public transport, going out for dinner at peak times, etc. and I will essentially be on a pregnancy diet, which is a bit better than a neutropenic diet at least! I will be on cyclosporin for approximately 6 months, by which point they will try to start weaning me off it. However, it's main role is not only to stop me rejecting the transplant but also to control the Graft vs Host disease that can be a major side effect of the process. This is where the graft can have a reaction against the body and attack it. It most commonly affects the skin (soreness, itchiness, in extreme cases, blistering and peeling), digestive system, and liver. The benefit of this reaction, however, is that the graft can also attack remaining cancer cells. If you'd like to read up more on this, this page is quite good: http://www.cancerresearchuk.org/about-cancer/coping-with-cancer/coping-physically/gvhd/about-graft-versus-host-disease.
Think that covers most things but if you have any questions please take the time to have a read of the links I have added prior to asking me, since, as you can see, I have a lot going over the next few weeks so may not be able to reply very quickly! Otherwise, I hope to catch up with those who I haven't been able to before the transplant as soon as I can post-transplant! Please bear with me though, as I may not be able to see everyone I want to as soon as I hope to, but I will try my best. The next few months will certainly not be a walk in the park though, so also please bear with me in terms of keeping in contact too! Thank you all for your understanding! :)
Much love to you all! xxx
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