What a bi**h Keith,
Dont you just love the powers that be. Lobby your MP, what have you got to lose. Get your fighting spirit going, Do it on a Dex day and get rid of all the anger the dex brings.
Im a newly liberated from work woman and sort of missing it already. Working in the law you are tied to regulations that dont make sense.
Min
Pleased to hear from you Roz.
One day at a time, get thru today and tomorrow will come.
Non of us know what tomorrow will bring and its just as well.
Best Wishes
Min
Hi Andy,and welcome to the mm club,
This is such an individual disease that the advise has to be there is not a one size fits all answer. My husband had an sct which technically is classed as a failure as he relapsed within 5 months. But that is not to say I would not recommend it. He went for an 'early one' and one wonders if he had waited until the numbers had come down to zero, if the outcome had been better. Similarly he came home on the day of his transplant. traveled the three miles or so every other day to the hospital for blood tests. On reflection I now realise that the one thing that was missing from his discharge was advise regarding a neutropenic diet.
It is only because he is now neutropenic due to his new medication that this question has arisen.
I would say see how it goes and if you get to the event you cant miss in august re-assess, and make a decision then.
In addition if you an get your figures to as low as they go before harvest, you will not be putting them back in at transplannt. Bottom line is at harvest if you have paraproteins that count. They will be collected and given back to you. Go for low!
Min
Hi Bridget
Im back to earth with the washing and shopping etc.
When Peter finished his 1st course, his neutrophils were low so the Dr gave him a lower dose rather than take him off it.
He has now had 5 days with no swollen ankles ( think now I know more that in fact this is due to the zometa)
Who am I to know but hopefully its the revalamid too. Lower doses are just as effective.
Im full of myself now I have learnt a lot more about this disease. Finished work Friday and I intend to keep much closer eye on what my husband gets up to.. By that I mean watch his fluid intake, feed him wholesome food. Not to mention bullying him into getting better!!!!!!
That will get him back to work and from under my feet.!
Love MIn
Hi Clarabell,
From experience of my husband having the same treatment I think that you will find your dad is going to be 'measured up' so to speak. For that you don't need to attend.
They will look at the scans and mark his body with a sort of 'tattoo (it washes away in time)
He will be given a further appointment where they will use the tattoo marks to direct the 'ray' (for want of a better word)
My husband was fine at that time but on the journey home he felt as sick as a dog. I realised at that point it would have been useful to have taken a 'sick' tablet in advance.
Once home the area around the tattoo was hot as if he had sunburn. The hospital will advise if and what cream to apply if it bothers him.
That therefore might be a more appropriate time to attend if you can.
I think he is great for being able to go to work but, warn him not to push himself if it gets to much. Fatigue is the worst side effect of CDT. When it hits he must just rest.
Hope this helps
Min
Jet
He had very good blood results, no sickness, no mouth problems, and we only lived 20minutes away from the hospital.
You stay in hospital because, if you have problems they need to ensure that they respond quickly to high temperatures infections etc. But often being in hospital means you can catch hospital acquired infections. Not least of which can come from your central line. He had no central line and the only 'infection' he had was caused by the canula put in place for his melphalan. He got this ten days after release. It was a hot red spot on his forearm. His only other problem was nausea and fatigue
He/ we use a variety of alternative medicines omega3 manuka honey etc. But they are complimentary rather than alternative.
I have read all the stuff about a number of people who are stuffing themselves with a variety of vitamins etc, but when you dig deeper and find the quantities involved and the fact that vitamins are not always medically prepared Personally i would not be prepared to abandon traditional medicine.
My husband used to go for acupuncture for a problem that cost him a fortune. A proper professor found out he needed a heart bypass to cure the pain in his wallet and the congenital defect in his heart.
If one is convinced that toxic medical drugs are not for them. I think they are extremely brave individuals.
If herbs and the like work is it the placebo affect that makes them work? If so at what point do you return to traditional medicine to get blood work done for results.
Very thought provoking topic
Min
My husband has myeloma, and his mother had myeloma.
His mother died before he was diagnosed.
I know what I think. and given the fact that this is a rare cancer how rare does it then become for mother/ son to suffer the same.
Both my children have pondered this problem and decided they don't want to find out after talking to their Dr's
I am inclined to agree with them.
My husband took curcumin as advised by an asian friend following his stem cell transplant. The same friend recommended a tv channel with yoga to follow. He said that people from his country rarely suffer from MM. He did strong exercises instead to get back his lost muscle tone.
Within 5 months he relapsed.
I have never been sure if this was due to being released from hospital on the very day he had his cells transplanted! He spent his entire isolation period at home. Taking nothing but anti virals and occasional nausea tablets
Hi Eve at the outset of his diagnosis Peter was on a similar quantity of tablets, due to chronic kidney failure, actually called nephrotic syndrome. In addition to all that he had had a heart bypass when he was 52 due to a congenital defect. The massive doses of morphine too for the crushed vertebrae meant he had to have two pill boxes and I had to make a chart out to take to GP. (you know what its like in a big practice never see or hear the same Dr twice.)
The dosages were changing weekly depending on responses to various drugs it was a nightmare. Watching my previously strong bloke shaking/trembling uncontrollably as he sorted out his boxes was heartbreaking.
He is much better now and on his third lot of medication for mm. So only one tablet a day and one at night. (not counting the 4 days dreaded dex) The only serious side effect of the current one Revlamid is bowel problems. But controllable.
Min
Hi Ladies,
I was getting a little worried about you Gaye when you went quiet for a while. I hope your getting on well with your exciting new drug. How is your back pain now?
How is the puppy Gill.
Cant add anything to your bra adventures but I would like to dispose of mine and sure will once I finish work. But I wish I could find a liberty bodice to wear instead. Does anyone remember them.As a child no child could be without one, but I forget at what age I discarded mine. Perhaps at infant school.
Min
Wonderful news Nikki
I recall the dark days you had at the outset of this 'journey' and I am so pleased with the positive outcome for you both.
Now, get on with the rest of your lives and enjoy. Good Luck for the future.
MIn
Thanks for that David,
I am going to a Myeloma info day this Saturday, if the opportunity presents itself I will ask why everyone does not get the same follow up treatment after SCT.
Peter got nothing other than Aciclavor if my memory serves me right. It seems like a lifetime ago and it was only last May!
Can I have a straw poll and find out if others are given anti biotics post transplant and if so how long your remission lasted. Need to be for armed if I am able.
Min
Hi Gill,
Like Steven my husband looked awful when on velcade, I would describe him as grey in pallor, he was tired but the frequency of the dex kept him going. He is far more tired on Revlamid, has some bad days but generally looks well and healthy.
Peter was so ill and his blood counts so low on velcade that he was allowed to miss one infusion, just prior to the week off. He picked up remarkably after that rest. Then its simply stopped working.
The puffy face may be the dex causing a moon face. Ask his nurse to put your mind at rest.
Min
Hi Chris
The rehydration salts were diarolite or boots own brand of them, Use twice as much water as recommended. Don't use them too frequently or often. But Peter was on 60 mg of frusamide twice daily
I was told by a friend that tins of 7up (lemonade) had all the salts you need for rehydration You can also make your own with 1 ltr water to 6tea spoons of sugar and half tea spoon of salt
His legs have been swollen since he started Revlamid, no understanding why. Some days are worse than others. He did have fluid retention up to his waist, when he was 1st diagnosed Half way thru the cdt course they were fine and have been for most of the time until lately.
He has had an SCT and he was fine for 5 months after it But one of his Drs said that as it was only 5 months it was classed as a failure.
I was told when asked that if you have had kidney failure such as Peters it will always be. Once the kidneys have been damaged by mm they cannot fully recover. Don't know how true that is. He is on a salt free diet as much as possible. . Not even the safe salt. Most people will manage to consume salt without knowing it. I used to read all the labels on everything looking at salt content and it is in milk so don't really need it in the rehydration.
Min
Hi
Pain is something that no one should have to suffer. My husband used to go to see his consultant and never remember to tell them about the pains. there was so much else going on and blood always overtook the conversation. then we would get home and I would have to listen to him complaining about the pain.
He was on 160 mg of slow release morphine and the occasional quick one(mst i think it was called) he also had 30 mg of codeine too if needed
While on CDT he had a dreadful cough and lots of phlegm and now he is on revlamid it has returned.
He had an X-ray at the outset plus a scan (one of those ones pregnant women have!) so not invasive and it was found he had water retention between the lung bags. Does not show up on x ray Not actualy in the lungs just the space around them. Needed water retention tablets to get rid of it. Plus anti biotics. This was what was causing his chest pain. He also had several collapsed vertebrae
He now takes 20mg of slow release morphine and more if he needs it. Or he tops up with a tramadol. He can still function and drive as normal
Please [b]Don't suffer with pain[/b]. Ask your Dr if you can safely increase the dose of morphine or whatever you are on. Paracetamol is a drug you are limited to how often you can take it and Solpadeine has a salt of some kind in it(Pete is not allowed to take it for that reason) Or ask for something different that will hit the pain properly . You don't have to wait until your next appointment to do this a phone call to your GP will do it. Peters GP rings his consultant if he is in doubt.
Covonia from the pound shop stopped him coughing then and now.
Keep well peoples and don't suffer in silence get help. It will make your quality of life so much better. Life with MM is hard enough so keep the side effects under control when you can.
I don't have the darn beast but I do hate to listen to it when peter is in pain, or suffering I want him to be as comfortable as it is possible to be given all the drugs and there side effects too. Comfortable is happy not comatose or whinsing
