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This topic contains 5 replies, has 4 voices, and was last updated by 
kh0305 2 years, 2 months ago.
Its been an eventful 6 weeks for my partner, he was admitted to hospital with an ischemic stroke in the middle of July which was a very scary time. He was recovering very well from this, but at 50 years of age, the stroke consultant was aware that my partner who doesn’t drink or smoke, isn’t overweight and is physically fit and very active, was in the wrong place for his age…..so investigations continued.
He was referred to a Rheumatologist and Haematologist, CT scans, Xrays and MRI scans seemed to be a daily occurrence more blood clots were found.
After all of these tests I asked the stroke consultant directly if they were looking for a cancer, the reply was “malignant blood cell myoloma”, so it really didnt resonate.
My partner was sent for a bone marrow biopsy on the 4th of August, by the 5th the diagnosis of Multiple Myeloma had been given, which we were then advised was a rare form of blood cancer, we were both stressed, confused, upset, angry and exhausted…with a whole lot of other emotions too. By the 10th of August full diagnosis with a treatment plan was given and (VCD) Chemo started the very next day on the 11th…its been one heck of a full on month.
My partner is taking everything in his stride, positive attitude and emotionally strong, he’s exhausted, were not sure if its more of the stroke or the myeloma that is causing the extreme tiredness, and he is really struggling with leg swelling (again not sure if this is more stroke-related or chemo)
He has his last session of his first set of chemo (2 per week for 2 weeks, then 1 week off) on Monday, which coincidentally is his 51st birthday 🙂
Ive been reading, reading and reading to try to get enough information so I can support him with the right questions to ask the hospital, at the moment we feel like we have lots of questions but not a lot of forthcoming support from the consultant, We have already had a battle between the stroke team and haem team whereby they seem to let my partner fall in the gap between the two areas, even figuring out which meds are from which dept has been challenging as we are aware there are ongoing activities in both areas.
I have been reading some of these posts with great interest (thank-you to all who speak openly about myeloma), it is part of our very steep learning curve, you’ve already inspired us to ask certain questions around consultant meetings (as we have nothing in the diary) and paraprotein and light chain blood results as a way to track progress as at present we only have kidney function information.
All guidance is gratefully received as we find our feet and try to recover from the last few weeks xx
Hello Sunflowers
Sorry to hear your situation. As you have found the first few weeks can be hectic and stressfull. Things settle down and you get into your treatment routine. I was diagnosed when I was 49 and here I am now 64 in full remission although a couple of hiccups on the way. New treatments since then and more coming. My feeling is and I have read others saying this is that a positive attitude helps. As I say to people I am going to grow very old very discracefully.
Best wishes
Kevin
Hi there,
I am one of the forum volunteers. I was diagnosed 3 years ago and it came as a complete to me. I was in complete kidney failure and needed dialysis. Aft 6 rounds of chemo the cancer had stabilised and I cam eoff it. I then had a stem cell transplant in January 2019 (and I can give you as much information about that as you want) and since then my cancer has not been active. It is an incurable disease, but quite often it is treatable. It is quite often called being in remission, although it isn`t really as the cancer is still there in the background, so it will return one day, but until it does I can live a relatively normal life and do so to the full. If it has taught me one thing, it is not to put off anything you want to do because anything like this can happen to any of us at any time.
I am sure that when he gets into the treatment it will settle down and he will feel better. I had VTD chemo, slightly different from what your husband is having, but I hardly noticed any side effects at all. If there is anything you want me to explain in more depth, please let me know.
Dont forget that there is help on here withAsk the Nurse, or thePeer buddy` system where you can speak on the phone with someone who has gone through it.
It is not easy sometimes, and you will go through some emotional stuff together, but both of you keep your chins up and fight it head-on. My wife and I did that and I am still here to talk about it!
Please keep in touch and let us know how he is doing.
Sincere regards, Tony
Hi Sunflowers,
Sorry to read of the crazy time you have both been having. It is often the same with MM unfortunately, that often it is missed initially as the symptoms can mirror so many other things. The good news is that it has been diagnosed and so you can focus on the treatment and moving forward.
I did exactly as you have done when my dad was diagnosed in 2013, read, read, read! It was my way of coping and it was also very useful and I’m pleased that the forum has helped you and prepared you with some information to ask of your partner’s consultant/team. There is much to get your head around and, even now 9 years on, Im coming across new terminology, treatments etc that I have to ask about/research. The world of MM moves along quickly and there are always new treatments and trials to learn about. And don’t be afraid to query things that don’t seem/feel right or that you have concerns about and sometimes, the admin side of things can be poor and you may need to take things into your own hands and push the hospital for things (for example, dad was sent home once without his bloods being taken even though he queried it there and then and phoned them to make sure that was correct… it wasn’t!).
I know dad struggled with fatigue during both the initial MM treatment and now during his relapse treatment so that could well be a big part of your partner’s fatigue. The fatigue did gradually diminish post SCT and Dad had a near normal life during his 7 years of remission.
As Tony says, there are loads of resources on this site which are helpful and feels free to ask any queries on the forum where we will do our best to help from our own experiences.
I hope things start to settle down now that you are into the treatment routine and that your partner begins to feel better soon xx
Thank-you so much for all of your kind words, I think this is the first week that our worlds have slowed down from the spin cycle and a little bit of a routine has started to form.
My partner (Stephen) has aced chemo 1 and Wednesday this week his consultant pulled us in for an update, I got to ask (based on discussions here thank-you) why my partner is not on the newer 4 drug chemo treatment, but we were advised that due to his stroke, Thalidamide would have an adverse effect for him, so VCD was the best option.
Now he is waiting for the blood results taken on Wednesday, but we did get some good news that the 4 days he was on just dexamethasone before his chemo commenced, light chains have reduced significantly, paraproteins have not changed, so we are both eager (as im sure everyone gets) to understand what impact the recent chemo will have had on his progress.
Chemo has now been rolled back to 1 day a week too, so im hoping that will be less impacting for him as his leg continues to be swollen. But the biggest thing, much like you have all voiced, is that a surreal sense of calm is washing over us both at the moment, as we feel lucky…to have the diagnosis and now be on the right journey.
I know I will reach out to those who have shared their stem cell journey given time, as it looks like a route that is being chosen for Stephen, your insight, help, conversations on this and other chats have already been invaluable with us being to ask some good directed questions of the medical consultants, this has been invaluable to us being able to understand more about the journey we’ve been on and the one we are on now.
I shall continue to give updates, but more importantly….we are not scared of this, we are going to and already are talking openly to our friends and family about Myeloma, putting us in the driving seat and back in control 🙂
Stephen & Sheena
Hi Sheena,
Good to hear that the light chains are already responding but most importantly that you are both feeling more calm and in control. I hope it all continues in this way and please do reach out if you need more support as you progress along your journey together xx
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