Those who have read my previous blog post will know that I am now awaiting to have a stem cell transplant (SCT)… this process kicked off on the 5th of November… remember remember the 5th of November!
It has now been over 72 hours since i had the chemotherapy drug ‘cyclophosphamide’, the first 24 hours were not as bad as I had expected .. but then yesterday I woke up feeling swollen and bruised, my face and upper body in particular felt battered. I have experienced this with chemotherapy drugs before.. Its just one of those things.. I know its just a matter of patience and soon ill feel better…
This may seem very random, but before i continue with this post I wanted to include some quick facts about stem cells and the transplant process so my upcoming posts make more sense… I really apologise if this feels like a biology lecture.. ill try to keep it short and simple..
What are stem cells?
Stem cells are cells which are made in the bone marrow, they are unique in that they have the ability to change and grow into many different types of specialised cells… such as cells for your liver, your skin.. you name it… but most importantly for patients like me, stem cells can develop into new healthy blood cells.
(Image found on google, link: https://www.cryo-cell.com/cord-blood/about-stem-cells)
What is a Stem cell transplant? Is it the same as a Bone marrow transplant?
Both stem cell transplants and bone marrow transplants involve taking stem cells and transplanting them into a patient who is unwell like myself, to give their body a chance to make new healthy cells. The difference between the names is simply down to how these stem cells are collected… a stem cell transplant involves collecting the cells from the blood stream, whilst with a bone marrow transplant the cells are collected directly from the bone marrow (much less common these days).
What are the different types of stem cell/Bone marrow transplants?
There are two types:
- Autologous (stem cells taken from the patient themselves) –> what im having
- Allogenic (stem cells taken from a donor e.g. Sibling, relative or someone on the bone marrow register)
What type of transplant is chosen depends on multiple factors, in some cases the only option is to use cells from a donor (allogenic). In my case based on my age and my scans, my doctors advised that using my own cells has a lower risk of death (as using someone else’s cells means a higher chance of rejection and long term complications).
It probably sounds odd that my doctors would carry out a transplant using my own stem cells… well as stem cells haven’t yet divided or changed, they haven’t had the chance to become cancerous (cancer cells form when a healthy cell begins to divide abnormally).
My doctors want to give me high dose chemotherapy to kill off any lingering cancer cells, but in doing so my bone marrow and immune system will be damaged. By taking my stem cells and freezing them beforehand, the cells can then be transfused back into my blood after I have been given the high dose chemo… hopefully these stem cells will then move back into my bone marrow and start making new blood cells.
(Sorry about the biology lesson.. i promise its over!)
I may have oversimplified my explanation and made it sound like the process is a walk in the park.. i am at the early stages. I don’t want to overwhelm myself or you…
So.. back to the 5th of November… the day my transplant process started..
This day was all about receiving a chemotherapy drug called Cyclophosphamide.. the job of this chemo drug is to “mobilise” my stem cells.. making them move out of my bone marrow and into my bloodstream, making it easier to collect the stem cells. The actual stem cell collection happens about 11 days later.
The Cyclophosphamide chemo is given over 2 hours as a IV drip.. but for an hour before i was given “pre medications” including anti sickness medication and steroids also through a drip. After the chemotherapy was over, i was then given tablets (‘Mesna’) to take to protect my bladder from bleeding, which is the main worrying side effect from this chemotherapy. I had to also take these tablets along with all the usual cocktail of drugs when i went home. Thankfully so far – no bleeding from the bladder!
Having had so many treatments I have pretty much become accustomed to all the side effects and dramas that come as a by product.. but what will always be difficult for me to deal with his hair loss.. i had just managed to grow enough hair to cover my scalp.. and i had began using my baby hairbrush to smooth down those fine hairs.. i had began looking in the mirror again, seeing glimpses of my old self… and now here i am again… beginning to loose my hair again.. cyclophosphamide makes your hair fall out, and the upcoming high dose chemotherapies ill receive will make me go completely bald again… it probably sounds ridiculous as i talk about hair loss so much.. i know my hair will grow back.. but it just doesn’t get easier.. this constant unasked-for change.. its like your identity keeps changing.. don’t get me wrong i love myself, God has blessed me with enough confidence to accept myself how i am… but for me its no longer about looking feminine and having long hair to brush and style.. its just simply wanting consistency.. not dealing with this constant cycle of change.. first world problems? Or maybe cancer patient problems..
Quick mention and thank you to my amazing lymphoma pharmacist and psychotherapist who have both worked to help me deal with all the side effects of chemotherapy.. there was a point when i would feel sick just entering the hospital (anticipatory nausea)… their continuous support and care has really made a difference.. there are really many amazing unsung heroes in the NHS..
The day after receiving cyclophosphamide chemotherapy I started taking GCSF injections (I have talked about them before – basically they stimulate the bone marrow to produce more cells… in the case of having a transplant.. the more cells which are produced the more there are to collect and freeze!).
Today is day 3 of taking these injections.. i have had them before so know what to expect.. I usually take them for a maximum of 5 days and they gave me really bad pain in my back and chest bone.. for the transplant purpose i need to take these injections for at a higher dose for 10 consecutive days!! I have been warned that the pain will be significantly worse.. my nurse called today to check I wasn’t in too much pain.. so far so good… watch this space for updates!!!
So whats up next? I will be back in hospital next week to have my stem cells collected.. i hope to able to document it all and share my experience with you!
I’m sorry my last post was very rushed.. I didn’t get a chance to thank each and every person who still bothers to follow my journey.. I really appreciate all the support.. my story is in no way as dramatic as what other cancer patients go through.. my heart goes out to every person whose life has been affected by this unforgiving illness.. together we have to all stand up to cancer… lots of love and positive energy to you all xxxx
11 thoughts on “SCT Stage 1: Cyclophosphamide Stem Cell Priming”
We all missed hearing from you. inshallah this works for you habibti xxx
Praying for you #TeamMilad x
Always in my prayers,
So happy to hear of your progress. Know that the Ahlulbayt (as) hear your name continuously amongst the requests that make their way to the gates of paradise. And though I do not know you, I’ve grown to become attached to your story, your bravery, and your character that beams between your sentences, how patient and how strong. You’re an inspiration. Love you Milad, keep going
So glad that you are finally able to begin this part of your treatment. You have had such a hard time. My daughter was diagnosed with HL in May 2016 but fortunately abvd worked for her and she has been in remission for one year now. I pray that you too will soon return to health and a “normal” life. You have shown incredible strength and resilience.Your family must be so proud of you. x
My dear sister Milad,
Although you and I share the same surname, we aren’t related and don’t know one another but a few days ago, I came across your journey…
My husband was diagnosed with CML back in 2005. AlhamdA, his condition is stable and overall has been well for the last 11 years…
Habibty, this week you have been prayed for during the arbaeen majalis of emam Al Husaiyn (as)…EnshA you make a complete recovery very soon…
…my heart, thoughts and thus my duaas are with you and your family.
love and duaas,
Your sister in faith 🌹
you are showing great courage and bravery when sharing your tough experience with us.
It makes me feel so small and weak before your strength and determination. It is all about human endurance and suffering.
One thing will remain too true. ALLAH is there with you, testing you, who has created you and will take good care of you.
sharing your stories will create super women, true heros, very meaningful life.
we are praying for you
you are unique, beautiful and noble woman.
Wish you all the best Milad. I’ m sure the SCT will be a success & you ll be back to your usual self soon.
Good luck Milad. You, like myself, are a warrior and will fight this disease. I send you a virtual hug.
I randomly came across your post and have been following since… truly amazed at your courage and will to fight this masha`allah. Keep at it and know that you’re in my prayers. Insha`allah praying for your quick and complete recovery.
Still here and still praying 🙂 xxx Amina
p.s. I have really missed your updates. Glad you’re back on the blog! #TeamMilad x x x x
Praying that all goes well inshaallah