[2grahamParticipant]

Now Then everyone,
I've been reading this discussion board a while and have learnt some invaluable insights but been too busy to contribute until now. But I am back on the steroids so have all night – I haven't been this wide awake at 4am since I was 18!

I am 48 and was diagnosed last December after breaking some ribs moving a garden shed earlier in the summer. They just din't seem to heel as fast as the doctor said they should. After a while he tested my blood because I had this pain under my ribs too , which turned out to be my kidneys struggling to cope with all the para proteins myeloma generates. More blood tests, skeletal scan and a BMB ( hurt like hell but got no sympathy off the wife who was holding my hand and reminding me of the 3 births I had put her through ) then the bombshell that it wasn't the mgus I was fearing but Multiple Myeloma itself.

I am now on the Myeloma XI trial and just started my 2nd of 6 cycles

Must be good stuff that lenolidomide, I take 1 tablet a day and my para proteins are down from over 20 to under 4

I work full-time and am trying to keep that up as much as possible. Hard at times, especially when the side effects all take their turn, I never know which one will hit me from day to day. Sleepless nights, tiredness, afternoon naps, dizziness, the shakes , the list goes on but they're all minor/manageable.

So, if anyone is in similar situation, new to this disease, on the trial drugs, suffering similar side-effects, struggling with work , please get back in touch and we can share our experiences and strip away all the duff, scary info I found on the Internet when first diagnosed and share some of the up-to-date, heartening, on-going success stories my medical team at the Friarage and James Cook Hospitals have told me.

[kevinParticipant]

Hello Graham,

Similar story. Diagnosed at 48 (5 years ago) after not being able to shrug off a back problem. As you say the bone marrow biopsies are 'interesting'. I had CDT treatment followed by a bone marrow transplant. Have been in remission since then. Was told at my last consultation a level of something was slightly elevated but no treatment necessary and will just keep an eye on it. Think I have been very lucky with the success of the treatment I had and even since then there have been advances with always something better in the pipeline.
Best wishes
Kevin

[bikerchrisParticipant]

HI Graham, I am at a similar stage to you, and have just started on my third cycle of Chemo and Thalidamide/ Steroid treatments. Like you I had terrible back pain, and rib pain which was put down to muscle inflammation until I had a blood test in November. I am 50, have a family and a very busy life, so it has been a bit of a bombshell to adjust to not doing as much as I could.
The good news is that I am feeling much better after the couple of months treatment which has included a shot of Radiotherapy on my back, because in the mornings I had to crawl out of bed into the loo! It was just too painful to stand up.
I am interested to hear how you are coping with work, because the money side of things people seem to steer away from on this site. Because I am basically a one man band, there is no-one who can pay me sickness benefit, and it will take time to sell my business. The levels of benefits from the Government are just pathetic, although they generously offer some help with mortgage interest – pretty small these days. Luckily I have a couple of income protection insurances, but until something happens there I have had to struggle on at work feeling pretty rubbish on a lot of occasions. I will
have to sort things out by the time I have any stem cell treatment as that will mean a month in hospital.
I have applied for Disbility allowances and a Blue badge on the basis that if you get one benefit, you usually get a load of others thrown in, and I may as well try, given that I probably won't see any old age pension (no use pretending).
Good luck in your treatments, and I would be interested to hear your thoughts,
Regards,
Chris

[HelenParticipant]

Dear Chris
I'm a few months post transplant now and looking to go back to work in the next few months. I worked up to stem cell collection point (I'm a nurse) since transplant in august I've been slowly recovering, we are all very different in our recovery speeds. I think the reason no one talks much about finance on here is that it is such a difficult subject to address. I've just filled in the forms to send away for the basic entitlement I'm due and they are very time-consuming. I expected to be back at work well before now and am gradually facing up to the reality that I might have to reduce my work hours and use the quality time I have now with my friends and family as I don't know how long I will be as good as this. It is hard to make these decisions and I've been a bit ostrich like until now and assumed I'd just carry on as before but my priorities are changing now. You should have a chat with a Macmillan benefits officer or one attached to your oncology unit, but no rush decisions yet, you have enough on your plate at the minute with the chemo and the ascr to come.
Keep your chin up
Helen

[bikerchrisParticipant]

HI Helen, thanks for your reply the other day, very useful and glad you are recovering from the transplant, I was surprised to hear how long it took you to recover though! The Beacon Centre have said they are pleased with my progress with the drugs, and may be looking at the SCT as early as Easter which is a bit scary. How did you find the experience?
I am trying to find a buyer or some help for my business as I will be out of action for some weeks, or longer, and need to take the pressure off myself. Like you I am trying to find more time for family and friends, and some holidays while I feel ok. Good luck with your return to work.
Best wishes, Chris

[HelenParticipant]

Hi Chris
I had complications which are resolving at their rate not mine! I do keep wondering if I've just turned soft but they assure me 'no, just everyone reacts differently' On Friday it will be 1 year since diagnosis day, and it has been very full on since the start. I have apparently been ' very sensitive' to all the drugs and only time will tell if that's a good thing! At least I know I've had them!!!! I found the high dose chemo bit was ok, do the ice cube thing to stop your mouth being more sore than it needs and be prepared for the next couple of weeks to be quite unpleasant but it is time limited and does resolve.
As I'm in the myeloma xi trial I'm taking the revlimid consolidation/maintenance therapy which makes you feel tired so that might be delaying me still, though I'm better now than I was at the beginning when I had it with the induction chemo.
You will need business help even if only to stop you worrying about it as much while you have your treatment.
Keep asking the questions, we'll try to help, i'll go and try to deal with personnel now……………. This may take some time
Helen

[Author]

Posts