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san 10 years, 10 months ago.
Has anyone else been diagnosed by a collar bone fracture? I have been trying to research my myeloma combination iga lambda with collar bone involvement but find nothing. I don't understand how the myeloma gremlins ate my collar bone when most adult plasma cells are in the pelvis, spine, rib area. I am on week 2 of CTD and cannot believe how poisoned I feel by the drugs. I understand I have at least 18 weeks of this treatment……… please someone tell me that your body adjusts to these toxins over that time.
Carol, I was initially diagnosed with a plasmacytoma in my right scapula a couple of years ago. It was a large mass that did quite a lot of damage to the shoulder region. I also have a small lesion in my left scapula.
so yes you are right, commonly damage from MM occurs in the spinal and rib areas, but not exclusively.
I can't help with CTD i'm afraid as I had PAD.
all the best
tom
Thanks Tom. I just read some of your older posts -you have really been put to the test…hope the next harvest goes OK. I asked about the PADIMAC trial but the consultant at Ealing didn't seem to want me to do it. This is all so new and such a minefield. It seems as though having the collar bone tumour hasn't affected your response to the initial treatment so that gives me hope that I may respond well too.
Carol I don't think location has any bearing on outlook so wouldn't worry about having a lesion where you have yours. Myeloma is a very individual disease.
Lots of people on here have had CTD and will be able to advise on side effects etc. Velcade will always be a future option for you if needed so I wouldn't worry about missing out on PAD this time round.
all the best
Tom
Hi Carole
Welcome if that's the right word! My Colin was diagnosed in October 2011 with sct nov 2012. Now recovering. He did have real up and down days on his initial treatment…..some days good some bad, some lying on the sofa, others up and about and enjoying ourselves.
He learnt to be used to the muzzy head and bad tummy and we worked around the treatment plan….the lesions are things we don't really know about buts usually damage the long bones…..that said though I suppose it can go anywhere.
Wishing you the very best of luck with your treatment
Vicki and colinxx
Hi Carol,
In my case it was my leg bone it munched, or rather it munched quite a lot of bones but not being able to put weight on my leg without pain was how I found out.
I've no idea but I guess any bone with bone marrow in could get myeloma in it. So maybe even though the collar bone is thin, it has just enough marrow to get myeloma, but not often?! Maybe at least because it was a thin bone it meant it was obvious very quickly, before it gave you any more symptoms or damage…. Though sorry you had to have a fracture to find out.
Sorry too about the CTD – I didn't have that but have had the D of dex and I guess if the C is cyclophosphamide I had that as priming for my stem cell harvest. And yuck, I know what you mean about feeling horrible, so there's no point pretending it's not nasty…. But all I can say is yes from my experience it's better after the first cycle in the sense that you learn the rhythm, which days you feel merely bad and which days you feel terrible, when you can aim to do stuff and when you'll need to be looked after and do nothing… On the other hand I did find some effects got worse over time, as some of it is cumulative and builds up – but it's worth it to get rid of the myeloma, and at least you can start thinking '1 cycle down, only X more to go' etc….
Welcome to the rollercoaster…
Helen
Hi Carol
Thought it might be better to reply on here rather than George,s post. 🙂
I would like to tell you your body will adjust,but every one is different ,my husband had CTD on the myeloma trials,and although I read as much as I could,we both were beginners ,Dex days had some good and bad points,ate like a horse,but he'll to live with.
I went out one day only to come home to a bed room completely different than when I went out,:-P I can laugh now but at the time,ahhhhh!!!
The third cycle was the worst,but unbeknown to us he had Pneumonia ,so 22 days hospital plus no CDT for another 2 weeks,the symptoms were very much like what we were told to expect,the only thing different was blood pressure,steroids mask infection,so be wary. I know I will never make the same mistake again,big learning curve,plus have become very vocal.
You asked how the gremlins attack the bone!!!!
Some form a tumour
Some break down the bone by clumping together causing lesions,because it is all over the body it could go any were,the whole Skelton is effected sometimes,some people just have one tumour
Some people have no bone damage,this is the problem with a cancer in the blood.
IgA and IgG are the most common ,as for bone damage David had a broken neck ,Ian has compression on spine,it just depends what those gremlins find tastier in different people,as Helen said they went to her leg. Some people it attacks the kidneys ,as the calcium gets into blood then kidneys causing damage,kidneys regenerate,but some people on here are left with little kidney function, this is multiple myeloma.
I know of someone who lived 18 years after being diagnosed,its getting better as more drugs become available,we all look for cause,but as you progress you will learn that no one knows??? There are other people ahead of you on this roller coaster,they can help you,they will listen.
My husband is having a Dex Day today half dose,he,s already bitten my head off twice :-0 .Eve
I understand about the dex I had to stop myself dusting at 3:30 this morning then thought about preparing the veggies for the roast lamb I planned for lunch. Somehow sanity overcame the dex delusions and I settled down to await the dawn with a hot cocoa and iPad. Gotta love/hate the dex. Dreading Wednesday though when I will have chemo sickness and dex withdrawal agony on the same day this week.Aaaaaargh! I have heard of dexilicious and dexatitudebut I think I have dex delusions …..thinking I am superwoman for the 4 days then suffering afterwards.
Carol I get terrible insomnia with Dex so I ask for sleeping tablets when I have to take it and find it gives me a decent amount of kip. Worth considering.
Hi Carol
Sorry to have to welcome you on this site. As others have said, we all get attacked in different ways by this horrible disease. I had a tumour on my spine which I had to have removed. I then had nearly a year with no treatment except bone strengthening tablets. They obviously didn't do much good as I then had an "episode" of losing mobility, and was then found to be full of lessions. My consultant was affraid i would get stress fratures, but I never did. I put that down to going onto the other form of bone strengther, Zometa, which I have 4 weekly by infusion. I think most folk have this now.
I was then put on CDT. It is toxic, and it made food taste funny. An advatage was I lost some weight. Otherwise I didn't find it too bad. I never had Dex days! I did get shingles, and didn't realise what it was at first, so do be on alert for infections. I also had one very sickly week in hopsotal.
I had six x three weeks on it. I did get moon faced and my hair thinned AFTER I finished the course. (I found some hair products called Ossie very good.) HOWEVER, now nearly a year on I am still in complete remission and am gaining more mobility, which was very compromised (I already had bad arthritis!) and have just come back from Luxembourg having taken my electric scooter with me! First holiday for three years.
MM isn't the end of the world. Keep as positive as you can and ask any questions and someone will help.
Very best wishes.
Mavis
Hello Carol, I cannot help you on the collar bone front, as I had vertebrae problems which is perhaps the more well trodden path; however I wanted more to advise you that CTD treatment does not have to be 18 weeks. I did 4 cycles of 4 weeks but I was in full remission after 3 cycles and could have skipped the last cycle. Please check with our Doctor and hopefully you will respond to treatment within a few cycles. Hope his helps. Tim.
Tim thanks for this information. My cancer markers are quite low I believe….iga 17 lambda light chains 435 and I explored with the registrar at Ealing Hospital about doing less cycles of CTD if I responded well. She indicated that they usually do the 6 cycles but boy am I going to be fighting for less! I am only in week 3 of treatment and have just had another 2 horrendous days of dex withdrawal pain, this time accompanied by stomach cramps as well. I am finding taking these drugs very difficult psychologically especially on the chemo day. As well my warfarin level is still too low so I am still having to do the daily stomach injection of the anti coagulant. From healthy ( or so i thought) to hell in 3 short months….it is all too much!
Carol you might want to reduce the Dex, how much are they giving you?
I was on 40 mg but my consultant said 20mg was just as effective.
Mothas I go on Monday for first bloods so am going to ask for a reduction in the dex. I know everyone I different but this is the 3rd day off dex now and I still feel rotten, also seem to have some numbness in my lips…thalidomide I guess. Seem to have wildly fluctuating pulse rates too from 45 to 80 so hope to see a doctor Monday to try to sort out just what is going on. Did our SCT go ahead?
Carol
SCT, I'm in on Monday.
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