Hi Robin
Myeloma is a cancer with no cure,but saying that your dad can have a lot of time in remission ,so all though it sounds bad,the more you learn the better you will understand it.Myeloma is such an individual cancer,and people react differently to treatment,one thing you will find on here is people who have travelled this path before your dad,many with careers in tow,so ask anything you want and learn as much as you can,it will take time to realise it can be done and your dad can get past the stage of thinking he is not going to get better.
One persons myeloma can not be judged by another persons Myeloma ,it is such an individual Illness,although treatment is the same for everyone,it helps if a person is positive.
My husband started his journey 2 years ago,he is now in remission after going on the MX11 trials and having SCT,he is one of many,we are making the best of the future that has been given to us.
It's not all doom and gloom,although 45 tablets a day is normal for awhile,make a chart when he comes home makes it easier to follow,is your dad a chatter box on the Dex,??. It is all doable asTom says ,but he will need a lot of surpport ,some people are years and years in to remission,the only thing you need to worry about is getting Dad in the right frame of mind.Eve
Hi Wendy
How are things going,glad to see India is still on the cards,but I would recommend you go Vedge for your stay,they have some lovely dishes,if you Like vedge they have some lovely food.
Have you started Velcade yet,hard to keep in touch now as I try only to look in these days,looked in today and saw lots of blank spaces,wrong that stupid people who abuse the net stop people posting.
Love to you Wendy.Eve
Hi Ozzy
Slim use to get grumpy on the dex,I would have given anything for him to shut up,so I can understand how Gayle feels. LOL
Soon be over,apart from that is the Velcade working for you hiccups were the worst thing,still is very loud and we can be any were,its 8 months since any chemo treatment and the last lot was for SCT,but those hiccups do not want to leave Slim.I just look the other way and pretend I am not with him,
Love Eve
Hi Maureen
So glad things are looking up for Ian,lets hope it will not be to long before he can forget the wheelchair.
When Slim used a wheelchair it was hard to see how he would start walking normal again,but he did,it was the summer so it made it easier,I use to take him out very early to begin with,had extra weight because the dog wanted to sit on his knees.Seems so long ago now.
He is no good at long distances mainly because of pain.
Keep in touch and let us know how Ian gets on.Eve
Hi Vanessa
Once you have had SCT you are again randomised for maintenance or not. My husband got no treatment,at first I felt he had lost out,but it does give you more time away from the hospitals.
He now goes for Zometa every 2 months boods and urint taken for trials plus we try to get appointment with consultant the same week,so that gives us 7 weeks freedom away from Myeloma. Eve
Hi Vanessa
Sorry you have Had to join us.
I can only tell you the chemo keeps on working after the cycle is finished.
My husband finished chemo a year ago around Christmas and he had gone down to 6 he did not have his SCT until May I between all this he had another blood test taken and it was 2. I was worried at the time they were taking to start harvesting plus SCT.i think they like to see how the body recovers plus build up before SCT,the only thing bad about it,is you start feeling so well and you know SCT is going to make you feel I'll again,plus the recovery period.
So it gets harder to make a decision .
Looking back now,it was a long time,he is fine now head full of hair,looking well,tires easy,plus back pain and chemo brain.
If it buys him more time it,s worth it.just have to hope for the best.Eve
Hi Grayham
Yes it is very scary,I think we all felt like that even careers,specially when they tell you there is no cure.we have all been there got over the shock asked the same questions ,my husband was like you,never took a pill or had a headache,well he has made up for it in the last 2years,our home has seemed like a chemist at times.
It does sound if you are having the same treatment but intravenous ly,you can down load lots of information from this site which you should find helpful,but you can always ask Ellen the nurse and we will help any way we can.
There is life after treatment ,we have just come back from NZ,so it's not all doom and gloom,treatment is doable,just watch out for infections and listen to your body,if you feel I'll see someone straight away,as infections can go through you very quickly.
There are people who are still going after many years,so just try to have appositive attertude.Eve
Hi Tom and Helen
I have always thought that soft tissue myeloma is very very rare ,there have been a few people on here with it usually discovered because of another reason,not looking for Myeloma.
Tom are you saying you have no Myeloma showing in bloods or urine?????
So are you looking for answers????
A Pet scan will show any Myeloma in soft tissue
As I said earlier Slims Myeloma does not show in results of B&U,and the only way to see the whole picture is BMB.
I think on trials they are discovering some changers to chromosomes,but it is in infancy in reseach,this is were the Myeloma Trials are important.
If you are looking in Ellen,may be you could enlighten us.
Tom if it is the case it is no longer showing in B&U,it is just unusual,a bit more of a worry,but as I said Slim has BMB because it is the only way of telling what is going on in the bones.
I think they know by earlier test,if you have a Myeloma that is aggressive,Slim has Myeloma IgG which is the most common,I think there are about 5 or6 different types,it is a pity the experts do not explain this,as it does give rise to worry.Eve
Thank you helen for doing a better job of explaining it than me,although I understand why Tom is thinking along these lines,I just felt it would give the wrong impression to any one who read it.
I would like to say,Slim has a lot of damage,tumour plus lesions on shoulders and skull plus all spine damaged but no compression ,plus Pnuemonia leaving blod clots and wedge shaped wholes in lungs,I have come close to losing him,but with treatment of CTD then Velcade then SCT,he is doing well in remission ,has strong pain killers,and has a head of black curly hair,putting on weight slowly,he will never be the same as he was before Myeloma,but it is nice to see the doctors smiling knowing how well he has done.
He goes for another .BMB next month as this is the only marker they can be sure of.
So never give up hope.Eve
Hi Keith
You must be so disappointed ,but they are prepared to still top you up with bloods and platelets,so that must count for something,When do you see the top man again???
They are trying to give you the best chance of this working,if they are prepared to do it,you have to go with the flow.
Anyway who wants to go on holiday with all this snow,unless you are planning to go skiing Joke honestly .
Give it time Keith,try not to think the worst,you have been here before,so you know the score.Love Eve
Rooting for you.
Hi |Tom
The school of thoughts with consultants is you should not,look at staging as the one and only aspect of myeloma ,as far as I know,staging tells you not only about bloods and urine,but the extent it has damaged the bones.
Everyone is aware the early cancer is caught the better the chance of curing it,but Myeloma is not curable.
Once the myeloma cells are no longer in the body or bone marrow,you are in remission,and it is just waiting until it comes back,the amount of damage it does is different,that is why you have people with little bone damage who get there life back on track,and other people with a lot of bone damage,suffer a lot of pain,either one can come out of remission at any time.
My husband is in an usual position of results showing good blood and kapper light chain results after CTD but the myeloma had gone up to 80% in bone marrow(this is very unusual) it only showed up on another BMB,so he started Velcade after treatment and another BMB he had no life Myeloma cells in his bone Marrow.
So although the body is Myeloma free,the damage it leaves behind is extensive.
I believe having extensive bone lesions and damage,does not mean you are less likely to survive than some one with stage one symptoms.A good example is the people like Outdoor Paul who succumbed to Myeloma a few months ago.
What you are saying gives the wrong impression to people just starting out on this journey,I would hate to think a new comer on here would choose no treatment,because they have lots of damage to the bones or high Myeloma cells in there bone marrow,because there chance of getting remission is just the same as anyone else. Eve
Hi Wendy and Ozzy
Sorry to hear you have both relasped there is not much one can say you must both be devastated,I can tell you Velcade is a good drug and seems to be having a good effect on the Myeloma,Slim got on better with the Velcade than CDT,he had 6 cycles straight after CDT,because they found the myeloma had gone up to 80% in bone marrow.
I know you must feel devastated at the moment,and the thought of more treatment after all you have been through,Slim felt the same,but at least the drug is available,it worked for Slim,better hope than no hope at all
My thoughts are with you both.Eve
Hi Susan
Sorry to hear you have Myeloma,but welcome to the club,it is very mind blowing when they tell you!!!,i cried when our own doctor told us,my thoughts were how do you control a cancer that goes all round the body in a blood supply.I had a lot to learn,and i have to say it takes awhile to take it all in.
My husband is on the Myeloma X1 trials ,he got CTD and for him it did not work the trials give you the chance to go on to Velcade that worked for him.if you choose not to go on the trials CTD is the treatment you would have.
You do not have to have a SCT, but thats a long way off,so i would just put that on the back burner and have your treatment,some people are not fit enough to have SCT,when the time comes you will see the experts who will tell you all about it,then you can decide.My husband made the decision to have a SCT that was last May,he is in full remission,but that must be your decision.Hope this helps Eve
Hi
It is so nice to see such positive reply,s to Mari.No matter how many people tell you there is light at the end of the tunnel,you find it hard to believe until you can see it for yourself plus we all know how this illness can change to become a fight for your life.no matter how old your children are,you still worry how things will turn out,even though we know life will go on.
It is nice once you have remission to lock Myeloma in a cupboard ,and in our case get it out every 2months,look at it and wait for the results,so no matter,were you go or what you do,you wait for it to find you.it does give you a better sense of how valuable life is,also what is important in your life.This gives you new goals and you never put anything off for tomorrow.
We might not have the years we thought we had,but the years that we do have are not being wasted,we cram as much as we can into the time between those 2 months inter fills .
Tomorrow will take care of it,s self,you cannot change it,so why worry about it,look at today and make the most of it,even if it is just picking up the phone and telling someone how much you love them.Eve
Hi
I can only tell you about my hubby,admitted with AKF,but kidney function improved,after a few blips,pneumonia which left him with wholes in his lungs plus blood clots,resulting in injections for 8 months, finally,referred to Kings for SCT.
Had SCT,but a reduced dose of chemo,enough to do the job,it worked SCT successful .
He had 2 strikes against him,kidneys,plus lungs,I think every one is amazed how well he has done,in one hand he was a smoker foe many years,but also very healthy as ex marine who ran marathon ,plus he had the attertude ,he was going to be first,has never regained his health,and bones so poor,never complains just excepts,this for what it is.
Gave up smoking 8 years ago,and drinking gave him up,when Myeloma. Kicked in. Eve
