Hi Nikki and Wendy
Welcome to the club that none of us would choose to join.
First multiple myeloma as you may already know is a cancer of the blood marrow. It called multiple myeloma because it can present in many different places. The most common first symptom is back pain. Which was my introduction to meyloma. Other indications are broken bones for no apparent reason.
Unfortunately at the moment there is no cure though great strides have been made towards a cure in the last few years so a cure maybe just around the corner.
The usual treatment plan is chemo, usually CDT, then hopefully a sten cell transplant (SCT) which will hopefully give you a long remission before a relapse. At relapse you maybe tried on another chemo therapy and hopefully go through to another SCT. The gap between remission and relapse varies widely.
It’s not an easy journey at times and not everything always goes to plan. No two journeys are the same. Different people react differently to the drugs.
Any questions you have this is the place to ask them. If you feel the need to rant, rave or even scream come on here and get it off your chest. You will always find a sympathetic ear.
I wish you both well as you start out on the myeloma journey and hope your treatment is very successful.
Every day is a gift
Andy xx
Hi James.
There are so many variables involved with myeloma that it’s hard to give you any information without knowing your circumstances.
That fact that you had Velcade then a SCT suggests you may of had kidney problems, that’s if Velcade was your first line of treatment. After your SCT you sound like you were put on a maintenance dose of Revlimid which may of been part of a trial.
Age, fitness and strangely health all play a part in the choice of treatment.
Chemotherapy is the use of cytoxins which as Eve says usually involve Cyclophosamide in combination with another drug or drugs Thalidomide, Velcade, Revlimid, and for me Pomalidomide. All come with a course of dexamethasone.
Nice lays down criteria for the order in which they are to be used which is usually CDT, PAD (Velcade) and RCD. The number of cycles and the responses required are also laid down by NICE.
For example I started on CDT and had 6 cycles with not a good response so couldn’t go the SCT. Next I tried PAD only had 2 cycles because my response wasn’t good enough. Next I was tried with DTPace not on the Nice recommend list but by now I was a special awkward case that didn’t work either. Next along came Revlimid and Dex, which I don’t think was on the preferred list at the time as it was not fully licensed, after a few cycles of little progress Cyclophosamide was added and I stayed on it for 22 cycles. I’m now on another drug not available through normal NHS channels only via trials and the Cancer Drug Fund which is who I get mine. With the inclusion of the ever present dexamethasone. My progression through the drug list is unusual as I’m a unusual case but it shows no two treatment plans are the same.
Going back on drugs that worked in the past is an option though Myeloma does evolve resistance to the treatments and again it becomes a judgement call.
David if you think Revlimid is expensive you should see the cost of Pomalidomide! I’m cost the NHS a fortune though Steph thinks I’m worth it lol. Though the NHS don’t pay for the Pomalidomide.
Well I hope I haven’t confused you too much James with my Dex inspired ramble. Good luck with you next consult.
Every day is a gift
Andy
Hiya Vicki and Colin
Just reread your initial post. If your consultant is leaving it for 6 weeks before Colin’s next blood test I would say he’s not to worried. He probably thinks it’s blip caused by the infection but can’t come out and say it in case he’s wrong. The blip could also be caused in the lab because no two test can be exactly the same so some variations can and do occur.
I don’t know much about FLC or their readings but I’m sure they’ll be like PPs reading just an indicator of how active the myeloma is. My consultant does worry until there is a definite trend and my other bloods start to show the effects of the myeloma – but there again I’m a strange bloke with a strange case as you know.
Fingers crossed its a blip. Oh just remembered my first trip abroad with myeloma ended with me going to the hospital the day we got back with infections and I had to go in twice a day for two weeks for all sorts of injections and infusions. I can’t remember what happened to my PPs but I’ll try and find that out tomorrow err today. It’s my sleepless steroid night every Tuesday.
Hope every thing pans out ok.
Every day is a gift
Andy & Steph xx
Hi David.
It does bu**er about with your plans having to fit in hospital appointments around life. My memory ain’t what it was and I have to rely on Steph to keep everything flowing as smooth as possible.
Sorry to hear you prostate cancer is causing you problems.
Are you sure you just don’t have an aversion to dentists and your doing anything to keep putting it off?
Your son got married on my birthday. Another number ticked off now the tricky journey to the next one. I hope you had a great day and everything was top notch. We went out for a meal with family and friends and had a good laugh and a lovely meal.
We keep talking about visiting Scotland for a holiday but whilst I can still fly it’s been put on hold. May need a passport when we get there lol.
Hope the tooth doesn’t play up before it’s extracted.
Every day is a gift
Andy
Hiya Vicki
I wouldn’t worry about a one off raised reading. There’s loads of reasons why that could of happened from Colin’s illness to a mistake in the lab! Even if it is an upward trend it could take a long time before Colin needs treating. If Colin is feeling good and the rise isn’t causing any problems I think they’ll just monitor the situation. It’s not possible to say a reading of xxxx triggers treatment because as we know everyone reacts differently.
I’ve nearly finished my 6th cycle of Pomalidomide now and so far so good. I see my consultant on Friday for my monthly reveiw hopefully she’ll be smiling.
As far as SCT goes I’m not sure if it’s on the cards. It was ruled out due to the number of different treatments I’d had hammering my bone marrow so much that I’d never be able to produce enough stem cells. Pomalidomide seems to be a lot gentler on me though and all my bloods counts have improved. I’m no longer neutropenic most of the time and my taste buds have turned up again. So maybe my bone marrow has improved.
I do hope Colin’s last reading was a rogue reading and you are able to step outside the mm bubble again for a long time yet.
Every day is a gift
Andy xx
Hi Helen.
I hope my back holds out too.
You seem to have the rest of the year all sorted for trips away. We’ve not got anything organised till September. Which will be another week in Greece if everything goes to plan.
Steph has cut her hours down and now works a 4 day week.
Oh I went to the opticians the other day and got told I’ve a cataract forming in one of my eyes!
Maggie is one of the staff from MyelomaUK she recognised me from my picture on here :-0
Every days a gift
Love Andy xx
Hi Richard.
Seems MichelleW is pushing the myelomacrowd quite a lot. Seems to be an American site.
I’ve not read much on there so can’t comment on its content though it’ll inevitably be more skewed to the American health care system if it is an American site. Guess I’ve got some reading to do 😉 hopefully it’ll be another valuable resource.
Every day is a gift
Andy
Hi Maureen
I was pulled off Velcade after 2 cycles, I was on PAD, as it was deemed not to be working I think it’s the NICE guidelines at the time. Though they may of changed since I was on it.
I had DTPace after PAD and that didn’t work for me either as you know I’ve not had much luck with the different treatment tut. I then went on to Revilimid and although I never got into remission it kept me stable for 22 cycles before failing me. Cyclophosphamide was added to the mix after my first few cycles.
Blips do happen Maureen and there can be several causes from infections to a mistake in the lab. It’s trends that are more important so Ian’s next results will probably be the important results.
Hope your trip down south goes well and the weather stays fine.
Every day is a gift
Love Andy xx
Great news David.
Let’s hope the good news keeps rolling in for you.
I got my latest PPs result yesterday and they’re down to 11.25 not a very low reading but for me a great result. That’s the lowest they’ve been since diagnosis! Guess the new treatment must be working a bit 😉 long may it continue.
Every day is a gift
Andy
Hi David
I’m planning on keeping on flying to Greece as long as I can David. I thought the latest trip there might of been the last after the bad start to the year I had but I’m feeling ok again now and we’ve already booked for our September trip. Steph has cut her hours to a 4 day week so we may get a few more trips away in the British Isles too.
Octobers visit to the lakes is booked in too as is the Nottingham beer festival trip – also in October.
Hope your trip to the dentist goes/went smoothly and you can smile with confidence lol
Every day is a gift
Andy
Hi Helen
There’s nothing planned for my back at the moment. We got warned about spinal cord compression and the need for speed of treatment if I get symptoms of it.
My last MRI showed some more damage to a couple of vertebrae including one I had kyphoplasty on. The radiotherapy I had earlier in the year has relieved the pain I was getting.
The consultant noticed damage to a vertebra in my lumbar area which will need to be monitored too. That probably explain the pain I get there :-/ hmmm wondering if it is more painful now he pointed it out lol.
I got my latest PP result yesterday 11.25 that’s the lowest they’ve been since diagnosis! I’m starting to believe that Pomalidomide is working 🙂
I hope you’ve made progress in booking your trip to Italy. If not why not!
Every day is a gift
Love Andy xx
Hi Helen.
Yeah we’re back from our trip to Greece. Had a good time the weather wasn’t fantastic but it was good enough and not too hot! Already booked for a trip back in September as long as I stay healthy.
I had an appointment at maxo facial before we went and it was confirmed I have osteonacrosis of the jaw. Though all was deemed necessary was just good oral care. I also had an appointment yesterday at the trauma department re my spine. Got the fear of god put into me about compression of the spinal cord and then was told I’m ok at the moment – phew – got to go back in 6 months for an MRI and another consult!
Really glad you had a fantastic time for your ahem 60th? 😮 can’t be true, in London and sounds like were treated really well 🙂
Get some more trips booked and party.
Every day is a gift.
Love Andy xx
Hi Maureen
Steph and I are going to the Newcastle, it’s in Gateshead really, info day on June 7th. It our second time and we found the first very informative.
Every days a gift.
Andy xx
Kalimera Helen.
Sat in the Greek sunshine.
Just read your post and I can totally understand your dilemma about having a transplant. I tried putting myself in your shoes and I couldn’t come to a completely satisfactory conclusion as to the drugs versus transplant argument. I know when I was told I couldn’t have an Allo I was gutted but that was two years ago and I think I’ve had two goodish years. Would I of had those two good years with an Allo? Unfortunately it’s impossible to tell. Hopefully your bad reading was a blip and you have time to consider everything fully, as I know you will, and come to a decision you are fully happy with.
Have a great time down London.
You can be sure we all have our fingers crossed for you.
Every day is a gift.
Love Andy xx
Oh crap! Half of my post has disappeared! First I can’t get signed in now this!!
Anyway Helen you probably know more about your options than anybody else on this forum though I do suppose that could be a curse rather than a blessing at times.
My latest news is last weekend was my nieces sons birthday so we had a little party. Wednesday I got a phone call to say his sister had gone down with chicken pox! Of course I’ve never had chicken pox so have no immunity to it so today or rather yesterday I had to have two injections, one in each cheek, just in case I was infected. It certainly isn’t a smooth ride this myeloma journey!
Wishing you all the best Helen
Every day is a gift
Love Andy xx
