Jane is a haematology nurse with extensive experience in stem cell and bone marrow...
was dignised with myeloma just before new year ....
i basically fell on some decking and hurt my back mid November and after getting painkillers from doc and it’s still not showing signs of improvement I ended up in hospital for a checkup where they discovered the para proteins being high and the rest is history...
they started me on VCD and for the first 4 weeks it was fine and my
pp levels had halved ....but then when they upped the dose of thalidomide to two tablets a day and my body didn’t like that and I started getting high temp and the most awful rash on my face and neck....
They’ve replaced the thalidomide with cyclophosphamide and I’m a couple of weeks in so fingers crossed this works...
think I feel generally a bit rougher on the cyclophosphamide bit it’s not giving me the high temperatures.....
anybody else out there have similar treatments/ problems initially??
Hi really sorry to hear you have had a hard time with your treatment, it effects every person so differently. It's good that your doctor took speedy action to change things for you. I did 8 cycles of pad chemo and it was the dex that gave me the most grief, especially with my innards and sense of humour !!!! Have you downloaded the info guide from myeloma uk for your kind of chemo it covers side effects and much more. How are you doing in general? It's a big shock for anyone to get diagnosed with myeloma as most people have never heard of it.
Hi there ....
yes it was a total shock and still is...
im 44 and both my gps have never even seen a case of it and they said it’s pretty rare and even rarer at my age....have gone though life up until now with zero health issues so to be hit with this has left me stunned...
been coping reasonably well but obviously there have been tough times mentally.....don’t know if it’s the change of meds in the last couple of weeks or just the reality of it kicking in but been a tough week...
i haven’t downloaded the info sheet but I will...
I have a checkup with haematology this week to check that this treatment is bringing my levels back down so fingers crossed ...
have an appointment/consultation next week in Glasgow about stem
cell therapy so that’s something else I’m trying to get my head round....
Hi reay, myeloma uk also have a info guide to stem cell transplants, its a good idea to get informed before you see the transplant team as I found the experience quite overwhelming and there is a lot to take in, and you can come out not really grasping everything you have been told. The info guide is the same as the one I got from the hospital and explains everything really well.
the median age for diagnosis is about 65 so you are young but I know of a few people who were in their thirties, I was 54 at diagnosis, the saga of which I will spare you !!!!
i think myeloma is 50% physical and the rest psychological so take all the support you are offered, you've got a busy year ahead of you.
Thanks will have a look at that as well
Hi Reay Rmk974 I happened to notice that you are going to Glasgow to find out more about a Stem Cell Transplant (SCT). Myself, including a few others have had Stem Cell Transplants in Glasgow.
If you want to connect with these folks and ask any questions you can do this over in our dedicated Stem Cell Transplant Forum where folks from various blood cancers walk the SCT journey together.
Its a good place to talk with folks who are looking into SCT or folks like myself who have been on the SCT rollercoaster.
Mike - Thehighlander
It always seems impossible until its done - Nelson Mandela
I know exactly how you feel, I’m 44 myself and was told it’s extremely rare for people so young to get it.
i only had a pain in hip where I thought I’d strained it to be told I had it.
Then to be firstly told it was secondary bone cancer looking for a primary in my chest. When nothing was found in my chest or head the bloods came back and I was told I needed a bone marrow aspiration. Never do I ever want another one of them in my life. I’ve had two now and so painful jeez.
Then a Consultant said to me its a type of blood cancer called multiple myeloma. I thought that’s ok better than being pickled. Then in his next breath said it’s not curable. That’s it, you hear that and break down, you feel you been given a death sentence and your life’s about to end.
The hardest bit is sorting your head with all the emotions attached to it, Ive sobbed my heart out over it all I’m not ashamed to say it.
The best thing I have found is the lovely people who tirelessly write on here to people sharing information with expectations and sending their love. Listening to stories where people have been clear several years after and as yet it not returning. I was at a real low point and put a few words on here and within minutes a guy called Greg wrote back to me and really lifted my spirits.
I’ve just started the chemo this week, 6 rounds then stem cell treatment so gonna be tough going.
just have to hope after all that it stays at bay for a while. Everyone’s different but some people only been low for little as a year and have to go through it all over again
The vdt don’t seem too bad at min apart from one red rash on belly where they inject me at the hospital
I think the most humbling thing is when you visit the chemotherapy unit and you see people even younger than myself going through this and other cancers all as scared as us hoping for good news. I think every one should visit this place as it makes you really appreciate your life and how day to day take it for granted laughing and joking around. You can’t believe how life can change in heart beat literally.
all the best
Thanks for the reply , sounds like we are are on similar paths...
yes trying to get my head round it is very difficult especially when you are on the steroids for a few days and you almost feel normal and pain free ....
Have meeting next week re stem cells and as you say yourself you’ve got to hope that after all we’ve got to go through that we get a decent amount of time before we need treatment again...I guess that’s what everyone is looking for ....
I spoke to a guy last week Local to me who has/had a slightly different blood cancer and he has been through stem cells and has been in remission for 3 years and is doing well and he’s also a lot older so he’s given me some hope ......he says the stem cells are tough going but the staff were superb and that made a huge difference to the whole thing.....
All the best Reay
How many rounds of the chemo do you have to have before your stem cell starts
I don't know much about it but by sounds of it I don't think I'm going to enjoy having it done.
Hi Mark, I am not sure if this question was for me but you can see my SCT story by hitting my forum name Thehighlander
thatll be one if the questions Ill ask next week so will let you know what they say....
the SCT doesn’t sound like it’s going to be nice in any way but what can we do...?? It’s got to be done .....going to read a bit more on the forum of other people’s experiences and whats the best way to prepare yourself for it ....
I don't know if like me you had to have a bone marrow aspiration done. I had to have two done and never experienced anything as painful so as long as it's not as bad as that.
I've only been on all the pills for 4 days but feel really achy in bones have you experienced that at all. Felt a bit sick last night but luckliy I wasn't and it's passed off a bit now.
Just wanted to add in a couple of things to this thread - hope that is ok?
First of all, thanks so much Mark for the lovely comments. I have been on this site for a few years now, and remember just how tough those first few weeks were, so to read that I might have helped you out a small bit is really very good to hear, so thank you very much for that.
In relation to the topics raised on this thread, there would be a couple of things I would add:
- Dexamethasone - as with any steroid, this has the potential to really impact moods. There were times when I felt full of energy (I remember waking up about 3am and starting work because I was so maxed out!). But the flip side to that is the crash. For me, it happened a day or so after the end of the cycle - it became helpful for me to timetable when I was expecting the low mood, because without realising it, I often became quite aggressive and not much fun to be around, and I noticed it affecting those I love around me as well.
- Stem Cell Transplants (SCT) - there are two kinds. Auto (your own cells) and Allo (a donor's cells). I would say 99% of SCTs in myeloma are autos - this is because allos bring greater risk, and there is little evidence that they foster longer periods of remissions in myeloma. I am assuming both of you are down to have autos, so a lot of what I will say is focused on those. Generally speaking, you tend to have as many cycles as you need that can get you to the best remission possible. You want to be in the best remission possible ahead of SCT as there is evidence that this can generate longer periods of remission. I ended up having 6 cycles of VCD ahead of SCT, but it is quite common that this is extended to 9, potentially even 12. I think there comes a point where you plateau on a particular treatment, and then a decision is made as to whether SCT is the right choice, or whether another treatment should be considered to get you to a strong enough remission to go ahead. They will then tend to do a bunch of tests on you to check for fitness for SCT (eg, lung, heart, etc), and then you go ahead of harvesting - this is where your blood effectively goes through what looks like a massive washing machine (it is effectively spun round really fast to get the stem cells separated) and then returned back to you. It can take 1-2 days until you get the amount of stem cells you need. After another couple of weeks, you then get admitted to receive a very high dose of chemotherapy (this is effectively to wipe out any remaining myeloma cells, but it also wipes out your existing immune system) before your stem cells are returned to you. They then take a couple of weeks to embed in your system, before hopefully the new system is up and running and fighting off any myeloma cells when they return). The way I have looked at it is that it is like pressing a rewind button on your immune system - the idea is to press the rewind button as far as you can without it causing you problems. It is not a risk-free procedure - it fact, most medical teams will tell you it is akin to a major medical procedure, so getting your head in the space that it is a tough thing to do is good preparation. But the medical teams are getting really good at them, and there is good evidence that it gives patients a number of years treatment-free, so on balance, to me it made sense to do it. And other than a few days of sickness due to the high-dose chemo, it wasn't as bad as I was expecting. I ended up ready to go back to work full-time within 3 months. You'll see from my profile that I went on to have an allo straight afterwards, which I'm happy to answer questions on, but it might not be relevant.
I am sure that there are going to be loads of things swimming around your heads at this time. My biggest advice at this stage is to take one thing at a time. The most important thing right now is that the induction treatment does what it needs to do, and that your bloodwork shows a good response to that. It is only at that point that the SCT will be confirmed in any case. I just used to look at one cycle at a time, look for a response in the bloodwork at the end of each cycle, and not look too far in front of that (also, try not to get too hung on any one individual blood result - what is much more important is the overall trend, rather than one isolated test result)
As others have said, myeloma brings with it some mental challenges. I am still not convinced why the word "incurable" is used, because it definitely knocks the patient for 6 (well it did me anyway!), but in actuality, you can live very well and for a long-time with myeloma, such that my consultant tells me that it is his job to keep me alive long enough that I die of something else! I am almost 4 years in now, and for me, it has not been the death sentence that I feared it was on diagnosis. And as many people will testify on here, with treatments developing all the time, and some potential game-changers not very far away, there are reasons to be hopeful and to think that myeloma will not be incurable for very long.
I really hope this helps, and I wish you all the very best with your treatments, and please do keep us updated as to how things go.
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Sorry, forgot to add on the bone marrow biopsies, I have had 5 in total, and I can honestly say I think it is circumstantial as to whether you will find them painful. I have to be honest, and say that 1 of them was incredibly painful and I don't think any amount of drugs would have made it bearable, but then I also have to say that with another one I genuinely felt nothing and was surprised when the doctor said it was done. And the other 3 were in the middle somewhere. The way I looked at it, it was something I had to do to get the knowledge of what was going on in my body, and there is always a pillow to bite on if things get really tough!
Wishing you all the best
Thank you again greg, the more I read what you write it certainly gives me a boost. I can see you been on here a few years now and I’m sure you have given so many people comfort and faith that it can be ok.
Trying not to think too much in early days and see what my levels start doing. I’m just hoping after a few weeks the pain in my hip goes down and I can walk better again. This morning I woke up and all my joints are aching, knees ankles etc. Feels like a droning pain not sharp pain. I hope that wears off in a few days time.
its mainly the two thalidomide tablets at night that knock me out. Least I get a rest though
thank you again for your continued help with all this.
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