Oh Dear Gay,
Don't worry the RT will start working soon, Peter's dose took about 6 weeks to be effective.
Now he takes 50mg of tramadol and 20mg of mst when he needs it. This is for new fractures and has to wait for his Kyphoplasty for a while.
But he is able to function and drive and work(albeit for 3hrs a day) though he is unable to at the moment as the Revlamid is playing up with his immune system.
I know its awful taking more tablets but its about quality of life.. The pain is obviously making you feel miserable and pain relief of the right dose and quantity can make it more bearable until the RT works.
Hope your feeling better soon
LuvMin
Hi Tracy,
Welcome to the MM club, lots of people on here with lots of info or advise if you should need it.
I can well understand your shock, no one is able to receive that kind of diagnosis and not have a million questions. As they have no idea what causes mm you can stop beating yourself up that its something you may have been able to prevent. There is a lot of info out there and most if it is scary. plus its out of date. Myeloma UK is smack bang up to date with current information, with a smattering of help from some uk leukaemia sites and Macmillan.
My Husband was diagnosed with nephrotic syndrome 4 months before being diagnosed with MM, he has bone damage in his spine due to the high doses of steroids for nephrotic syndrome. Also undoubtably the MM damage too
In his case the kidneys often make a recovery whenever he gets his doses of zometa. As for the amloidosis I have a good friend who's husband had it and mm and he is in a good remission now.
I am really interested in your ibs /gluten intolerance as Peter has ibs of a sort but has had it for over 30years and MM was not associated with it. He always called it his dicky tummy. But we are fortunately all different.
B12 deficiency I imagine is a typical MM trait as many mm sufferers have anaemia due to the very nature of the condition. I had B12 deficiency causing pernicious anaemia in my youth and it was due to very poor diet( I lived on egg and chips 7 days a week) and mars bars in between!.
Has the gluten free made a difference? or is it the Thalidomide? Peter was bunged up on thalidomide and has never been that way in his life, now on Revlamid which is same manufacturer and it has the exact opposite effect. I am inclined to give the gluten free a go though if it helps him. Let us know how you respond to it.
and good luck with your treatment regime
Min
Hi
As I understand it as explained by my husbands consultant. Revlamid is a drug that you stay on if it works on you. It is not a drug you stop per sae simply because it has worked. It is also a maintenance therapy and as long as it is beneficial your husband will remain on it perhaps in lower doses or in company with another medication like velcade. It depends very much on the response to it, it is made by the manufacturers of Thalidomide, and like that drug but with lots of the bad side effects taken out.
I suggest you ring the myeloma infoline to put your mind at rest about it.
Min
Hi Bridget
I got it wrong, Peter finished his 2nd packet yesterday so now on a week off, Hospital next week for a new packet! Still feeling good.
LuvMin
Sandra
You are allowed to moan all you want. The sensitive teeth thing was something Peter had with velcade and still cant manage a drink out of the fridge.
I don't know that water is the absolute advise, as I watched a programme that showed that as long as its liquids that will do.(NOT ALCOHOL LOL) Get some sensitive toothpaste and don't wash your mouth out just spit it out, it works better that way.
Good luck
MIn
Hi Ron, My husband has had Baloon Kyphoplasty done on two vertebra and only delay to getting the other two is the fact he is on blood thinners.
The surgeon made it very clear it would not be done for cosmetic reasons only to alleviate pain. However if by suffering from kyphosis she is unable to raise her head to see dangers ahead for instance that is a different matter.
I can tell you that the operation did not take the kyphosis away for my husband it was exercise. The muscles that maintain the spine are withering away due to not being used and a good physio [b]may[/b] be able to help to straighten up a little.
I think if it were me I would be telling them it is painful just to get the proceedure done! Get a referral from her GP and see what happens
Min
Hi Nigel,
You cannot have velcade until your bloods have been tested for a variety of things. You are therefore pretty much tied to the hospital as its twice a week for 3 weeks at a time. Then 1 week off meds to recover from the previous 3 weeks
Min
Hi Sarah,
Well I have now had 6 days of not getting up for work, I have the pension form to get to the Pension People tomorrow(not yet filled in) I have done my sums a lot of times to see how poor I will be until the OAP pension kicks in. I am spending far too much time on this computer, but still have sciatica so cant do much else. My plan is to do a room a week of spring cleaning if I can, by which time Peter may be fit to travel. Nice to know I don't have to rush to do anything as I have all week off!!
I would like to watch TV late night in bed but Peter moans so will invest in some earplugs for him! It is the weirdest feeling knowing Ive wanted this for so long and now its here its a bit of an anti climax. But its very early days yet.
I wanted to dash off to see the grandchildren but daughter has gone for her leaving do to New York of all places so that is ruled out for this week. However son is home from sea in a few days so lots of lunches on the cards.
Then its decision time do we move house or not. So really got a lot to do.
All the time in the world to do it though.
Enjoy you night out
MIn
Dear Bridget,
I know what you mean Peter is just a few weeks ahead of you and on the same lowered dose, he too was all haywire etc when he started the 2nd packet, but in addition he has the worst diarrhoea. Being kept under control with more pills! This has been the case since he started the course.
On the plus side this week he has turned a corner because following on from his zometa last week, his kidneys and swollen ankles have suddenly recovered and no more Ferusimide. I keep telling him its because I have got him drinking a lot of 7up! instead of coke. He does drink lots of water in between, and I have been buying him bottled water to encourage it. (Don't normally)
He has no hospital visits until week after next but he is feeling much better this week and little more energy than before too. Runny nose when he is eating for some reason.
I / We assume therefore that this stuff is working as he didn't get any kidney relief from the velcade. He has not seen the Dr since he was given the new Packet so maybe he may get GCF injections at next appointment.
No sweating but he is very hot, no temperature either. He was like you when he was on Thalid. Soaked in sweat, but not this time. Keep up the fluids and flush those darned kidneys, Hopefully you will feel better once you get into it, I do hope so. This second packet is supposed to be the same as the first and hopefully after that it will be plain sailing for both you and Peter.
Keep your chin up Bridget, hope you feel better soon
LuvMIn
Hi Eve try http://www.insurancewith.com
Got a quote down from several thousand to just under two hundred.(quid) Im just waiting for my husband being fit to travel due to neutropenia or I would be lying in the sun now.
It is raining and It is cold enough to freeze the *** here in the north east today. If he doesn't hurry up and pick up Im going to leave him at home LOL. Anyone got any thoughts on how to increase neutraphils?
MIn
DAI
I am so sorry to hear of the loss of your faithful friend, [i]He was never just a dog.[/i] And he looks a handsome chap.
I have had to do the same with my 1st collie and labrador and the sense of loss is overwhelming. Not being greeted in the morning and when you come home leaves a massive hole to be filled. This is why I have 3 dogs! The grief of losing the last one made me determined to 'have one in reserve so to speak as the guilt of getting a replacement is very real. Truth is you cannot replace them but you can get a new friend.
MIn
Hi The fingers worked, I am now officially free and unemployed. I have a massive hangover after going out last night to celebrate with colleagues but thanks folks for the crossed fingers. I don't have a letter yet to confirm this as my employers could not organise a **ss up in a brewery! But I do have a healthy bank balance.
Im sure they will get round to it when they do there accounting. Next stop the dole office!
MIn
I agree with Bridget,wholeheartedly in the meanwhile the most natural form of diuretics is fruit of the variety that includes oranges and lemons plus grapefruit.
I used to buy dandelion tea bag too as they are a natural diuretic too. The kidneys filtration system is blocked up, causing the filters to stop working at full tilt. drinking copious quantities of water/fluid helps to unblock those filters and get them back to working as they used to before being blocked.
Meanwhile elevate the legs on a stool or chair and put a pillow under the mattress, It helps it to look less alarming and prevents the skin becoming uncomfortably tight due to the swelling. Use a lot of cream to help the tightness of the skin. any cream will do as long as its moisturising.
Mn
Hi Edo
Well where do I start, Im pleased you found your way to the discussion forum and sorry to hear about your Dad, sounds like he is a tough old man, who is going through the mill right now. Velcade dex and Thalidomide are a real toxic combination and I am not surprised he is tired.
I have no advise to offer on rectal bleeding other than my husband had it when he was put on CDT, following which he had a rectal exam by camera and it was found to be haemeroids. ( He will kill me for telling anyone)
they actively treating him for whatever is causing the problem?
Have you asked what is causing it or where exactly it is coming from. I have learnt that velcade can be used again and combo therapies work where one does not so no worries but perhaps a smaller dose will make him better able to tolerate it. For his age he has done remarkably well, as only very fit patients are considered for for sct
I think the answer lies with his Dr's who know what he can tolerate, perhaps you could arrange to arrive for ward rounds so you can ask some pertinent questions, or speak to the ward sister.
I hope he responds well and please let us know how he gets on.
MIn
Having read all those poems and understood them as being me!
I realize must get a grip with the one desire in my life.
For years I have wanted a pair of 'in line skates' every time I see them I want them, but my age has prevented me either buying them (not to mention the fear of a broken ankle) or telling anyone that that is what I want
But Im gong to do it, if only to say I got them, What do you want to do that age and health have prevented?
