BLOG 50
10 November 2014
My work-up appointments are basically finished and so far all looks good - I just have a dental, bone marrow aspirate and Pet Scan to go and then we wait until 28th November for transplant admission. Today, I asked one of my doctors about the DNA/Blood types again. It is true that I will have two DNA's, my regular cells DNA will be from my parents, my bone marrow DNA will be from my donor. I also found out that my donor's blood type is A Positive. I was born as an O Positive. When the chemo kills my bone marrow - my blood type will cease as O Positive.
For at least 3 weeks during and after my chemo and whilst my new cells are engrafting, I will need lots of red cell/blood and plasma transfusions from blood donor's, as my dead bone marrow won't be making it for me. During this time, I can be given either A Positive or O Positive. When my donor's stem cell's start to produce blood, my blood type will then be A Positive - then a new life. Yesterday I saw several doctors and specialists as part of my transplant work-up.
My dietician was thrilled that I had put on weight in the last 6 months, even though I've been trying to get rid of it. She wants me to be plump ahead of the transplant. I'm like, 'no thanks' 'I want to loose it' - apparently, I may loose at least 10kg during the transplant.
That's just fine with me. I also saw my hospital pharmacist, she said I will leave hospital with 15 prescription medications + what I already have (I am currently on 7 various medications). So the grand total will be 22 different medications I will need to take everyday. I will slowly be weaned off them, but, will be on antibiotics for at least 1 year continuously - Wow!! that blew my mind.
Thank you for reading,
Much Love,
Jodie & The Guerrero Family xx
She is determined, motivated, strong, tenacious, unwavering, steadfast & courageous.
Additional development to the below blog:
TRANSPLANT POSTPONED @ THE 11TH HOUR
(26th August) - I went to hospital (24th August) & waited for the conditioning chemotherapy, & waited & waited. Then admitted to the ward....& waited some more. I spoke to & consulted with the chief Neurology consultant & then met with my Hematology consultant. The result of the neurology consult & further meetings between several Hematologists, was basically that the Neurology department feels there is not enough evidence to proceed, at this stage.
We were given a choice of going ahead with transplant or wait for more evidence to appear on subsequent MRI's (regular MRI's to wait for a visual change in S1 nerve). I expressed my distress at the whole event and what I felt had been a useless exercise, but have chosen to wait for change on the MRI and for all practioners at my new hospital to be in agreement, that I require a transplant. My Neuro/Haem consultant's believe I have the disease in the area & that I will need a transplant @ the right time, However they also have concerns about whether my body can tolerate the levels of toxicities needed for the transplant. The risk of death is higher for me, because I am/my bone marrow is currently still recovering from the last 3 rounds of systemic chemotherapy, which began in January/09.
So, we could have chosen against waiting, but I would rather have every doctor in line with a common opinion & all be positive that what we are doing is right. I don't want to have this transplant, if it is only my choice to go forward and I am not backed up by a full hospital team.
In the meantime, I must manage pain and an ever weakening R leg, until we find a solution....and hope, hope, hope & pray that my leg is not permanently damaged, as we wait.
Will blog again when we have major news.
This will be my last full blog before I commence high dose chemotherapy on the cusp of an Autologous Stem Cell Transplant at my 2nd hospital, Brisbane (Australia).
I start E-SHAP conditioning chemotherapy on Wednesday, 24th August. In Australia each year (out of a population of 21 Million, approx. 1100 stem cell transplants are performed).
WE ARE ACTIVELY FUNDRAISING FOR A CABIN FOR ME/TO BE PLACED ON OUR PROPERTY THIS IS FOR INFECTION AND FATIGUE MANAGEMENT (a notice about this is listed below).
A recap: The conditioning chemotherapy and treatment will be undertaken by my 2nd Hematologist and his team. I am now in his care (as many of my readers know) because I am now experiencing a 2nd relapse of Follicular Non-Hodgkins Lymphoma (symptoms: weakened R leg, pain & bladder issues/due to S1 nerve involvement).
I was referred to this 2nd Hematologist by the RBWH, whom had cared for me for 4 years.
If I get a good day or small spot of feeling well, during treatment, I will keep you all updated, mainly through Facebook/Twitter this is determined by how I feel physically from the disease and the chemo. I may be off Facebook/Twitter for weeks or months @ a time.
If anyone wishes to contact me directly I am happy to receive text messages (from USA) 011-61-437441367 (from Australia) 0437441367 I wont be answering calls, just texts (if I am able).
Before you text please read my page on What to say to a Hematology/Oncology patient.
Also be aware, that I am happy to receive prayer, but not interested in travelling to receive this from particular persons.
The general plan (as long as all goes well) is:
Week 01: E-SHAP conditioning chemotherapy x 5 days, as an in-patient.
Week 02: Home, if well.
Week 03: Home, if well.
Week 04: E-SHAP conditioning chemotherapy x 5 days, as an in-patient.
Week 05: Home, if well.
Week 06: Home, if well.
Week 07: BEAM conditioning chemotherapy x 8 days, as an in-patient.
Countdown 08 days to the STEM CELL RESCUE.
Week 8-9: After countdown my own Stem Cells (collected 3 years ago) are returned.
Countdown 100 days of careful observation/after 100 days I will be safer, infection-wise. During the treatment and recovery, I will continue to receive blood, plasma & platelet transfusions, as required. I will also probably have a new Hickmans Catherter or a double port-a-cath inserted, as I require 2 ports and only have a single port in my chest at the moment.
After the stem cells are returned to me, I may stay in hospital for some time or try to go home....this depends on how my body has handled treatment and transplant.
Overall recovery from a transplant, can take at least 1 year or more.
I am well aware also that due to the 63 previous treatments, I am already immuno-suppressed and this will greatly impact on my ability to take the treatment and the transplant. If symptoms return after the SCT (stem cell transplant), the next progression is usually Allogenic SCT (donor stem cells) or subsequent autologous SCTs (my stem cells). We are aware also that any SCT is risky and that without this procedure my life would be threatened.
Greg is happy to receive help with house duties, caring for the kids, meals and anything his wife would normally do. He will accept any help offered....as he can. His cell phone (from USA) 011-61-413235181 (from Australia) 0413235181.
If we have an emergency and need urgent support, we will post this on our Facebook/Twitter accounts. We are believing for the best, remaining positive and trusting my doctors and my God for the ultimate, remission and one day, cure. Thank you all for your continued support and love.
Love & Blessings, Jodie G.