Ask Caroline, a Macmillan Nurse working with people who have Leukaemia, Myelodysplasia...
Jane is a haematology nurse with extensive experience in stem cell and bone marrow...
Hi all, I'm buckling up for the ride
See my personal info for the train crash of my journey so far...sorry for length
Yesterday had first chemo at Addenbrookes day unit about an hourish away. Given the GCSF that needs mixing together. Gave myself 2 jabs rather than leaving needle in for second syringeful...followed by a clexane chaser!
I hesitate to say this was the simplest bit...
Will return there for Auto stem cell harvest planned for next Tuesday and Wednesday (9/10th). Will stay in caravan nearby as hospital accomodation doesn't take dogs, obviously!
Transfer will be at my local hospital in Ipswich
Greatly encouraged by all your stories....in my moments of despondence and anger I know you're all there with your experiences and encouragement...if you can do it I'm going to give it a damn good try!
My husband is always there for me and takes one day at a time....he never reads up or anticipates anything, no questions or negative expectations. However I'm the questioner, reader, planner, preparing financialspreadsheets...info, dates etc for when I expire (sounds better than die or snuff it or shuffle off to rose cottage, lol). I'm learning to stay in the moment and breathe.....trying not to jump forward to all the things that can go wrong but taking notes of advice....avoiding mouth ulcers is a Biggie.
Veins not good after 2 courses of chemo. Pick line never worked well. In for central line this week...hope we can go for subclavian rather than neck. How does showering work?
CAR-T has been mentioned as being a possibility so there's hope if this doesn't work....last resort....let's get this over first with lots of crossed fingers as I'm really not that optimistic regarding long term.
Kudos to all with long term health conditions especially with pain issues.
I'm not sure I've got the strength to 'live long and prosper' Spock
Regards, Lynda xxx
Another day survived
Hi Lynda, I was thinking about you yesterday as I was driving back home from Edinburgh - wearied!!
I am pleased that you are now making progress, you have been on a very long journey to get to this point so lets look for this to be the beginning of the end.
I had Hickman Lines for both SCTs. My ones were in the neck and had no real issues with them. One decided to stop woking the night before I was getting my cells to it had to be changed at silly o-clock ready for the morning.
I was told to shower as normal. told to not wash the areas directly and carefully pat dry and all was ok. Dressings where waterproof and changed every 2-3 days to ensure no infections.
Have you been told what Conditioning Chemo they are using? Some chemos are worse than others and Melphalan being particularly bad for some folks. This is a thread that moomy put up a number of years back about Melphalan and Ice
I had Melphalan for my second SCT but the Conditioning for my first did not include any chemo but Radiotherapy and some fancy drug but for both SCTs I was using a two pack oral rinse called Caphosol. It is very expensive and some units will not pay for it but it was standard at The Beatson in Glasgow.
Once the mucositis gets past a certain point the Caphosol would not be so effective and more specific anti-fungal/painkiller treatments need to be used to get the condition under control. So I had my phone set for every three hours during the day. Was using it from the first day in the unit T-11 for my first SCT and T-7 for my second and had no real problems..........you need to ask what they give you to use.
I also continued to use the Caphosol for all the days following the SCTs so 17 day post SCT one and 20 days post SCT number two.
We are around to walk this with you as we have done over this long journey you have been on......... and lets not be thinking that CAR-T will be round the corner.
Mike - Thehighlander
It always seems impossible until its done - Nelson Mandela
you can do this!!!!!
thinking of you and rooting for you, take a day at a time and keep an eye on the end game of full and long term remission (but know they have plan b etc if needed!)
Thank you, moomy
Have just googled Bombe.....OTs are so nosy! An enigma machine thingy?
Appreciate your ongoing support x
Now just thinking why the auto with likely active (chemo reactive) disease, rather than straight to allo. I'm just so worried now it will be one treatment after another until l'm completely ground down. The information and emotion and likely symptoms just look like a wall at the moment.
I know I have to take it apart brick by brick. It's hard.
Regards, Lynda xx
Hahaha, Lynda! (I was an OT so know just what you mean!) a Bombe was the combined work of the Polish Cypher Bureau, Alan Turing, Harold Keen and Gordon Welchman, to build a big machine to speed up the breaking of the Enigma daily settings. Built by the British Tabulating Machine company in Letchworth, later ICT, ICL and now Fujitsu, the wartime buildings now not there. (211of them by the end of WW2, eventually all dismantled)
Our Rebuild Bombe was the hard work of 60 engineers, and took 12 years in total. It’s now 12 years old and is needing quite a lot of maintainance, as well as regular cleaning, oiling and greasing (which is my regular weekly work)
it works and we use it for Enigma challenges every so often too.
Thats the short version.....
As to your other problem; if your NHL is chemo reactive then there’s every chance an auto (basically a hefty hit of chemo to ‘wipe’ your immune system) with your own cells to rebuild it from scratch, should be an easier option than going through to allo which ( though the process is similar) is a heftier challenge afterwards.
You've always got an allo to go to later if needed, plus CAR-T which is being used for NHL now.
And an afterthought;
if you feel getting other opinions might help (it is your right as you know) then ask if your team would discuss your case with haematologists such as Professor John Radford at Manchester’s Christie hospital, or Dr Chris Macnamara at UCLH, they are the two I’ve met and had dealings with and would really really trust, but know the haematology team at the Royal Marsden is pretty good too.
Thank you, moomy,
I'm guessing/hoping addenbrookes is pretty much up there with the 'gold standard' of treatment and my consultant has weekly mdts with them which is reassuring. He has mentioned kings rather than uclh if CAR-T needed. I don't feel at all assertive at the moment, I'm a bit beaten down. Usually I'm quite bolshy which my husband's tells me is quite aggravating. He's right I guess.
Hi Lynda Haffygirl, I was just having a look at the great reply you received from Jane in Ask an Expert.
Remember, I went into both my Allo SCTs with active NHL. Yes we cleared the growth in my neck and my lymphatic system was blasted with radiotherapy, but we could not get my skin 100% clean and as this is where my main condition lived for all the years it was a “let’s give this a go” moment, so the new cells had to fight the battle for supremacy xx
Thanks for replies, I'm a bit reassured but still worried it may be in more places as yet undiscovered, lol. We won't know til the pet scan on the 16th July.
I had central line put in last Thursday 4th July 2019. Uneventful but exacerbated my acromioclavicular joint pain. Very sore at shoulder end of collar bone.
My stem cells were collected yesterday...in 4hours, is that a record?
My wbc was 1.6 the day before, so I had a double dose of GCSF...and it shot up to over 10....they seemed to think that was very unusual! Only had bone pain on one night (always take injections in the evening)
As I filled a cancellation, the tests are all a bit out of order. I have my kidney and lung function as well as pet to look forward to....and then in 3 weeks, the dreaded chemo and a stay in possibly the worst single ensuite hospital room ever....noisy, cramped and big south facing windows with no air con, and a really bad light up picture on the wall....I'm not ungrateful, really!
Best wishes to all those going through this process xxx
Big ((hugs)) Lynda, the joys in the journey xx
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