This topic contains 11 replies, has 9 voices, and was last updated by 
ruth75 13 years, 8 months ago.
Hi, I hope you don't mind me posting here. My husband, who is only 29, was diagnosed with Myeloma last week. As I'm sure you know it has come as a huge shock. We have four children aged 6,4,2 and 1.
He was sent to a&e by the optician for a ruptured blood vessel behind his eye. They told him he had haemorrhages behind both eyes and would need to return for a scan. They also did some blood tests whilst he was there. The following morning he was told to go straight in as he needed a blood transfusion due to a very low blood count. He was admitted but the held off on the transfusion, saying they needed to do further tests first.
The following day he had a bone marrow biopsy and at 4pm we were told the news that he has Myeloma. The consultant said she had 'known' almost straight away but just couldn't quite believe it due to his age. She said the levels of proteins in his blood were very high, hence the eye problems, and that his blood count was very low (5) and as I remember it was both his haemoglobin(?) and platelets which were low. He was put straight on high dose steroids. He had a plasma exchange yesterday followed by a transfusion and another plasma exchange today, and will be starting tablet form chemo soon. (Sorry I'm not 'up' on all the correct terms yet).
Sorry if this sounds selfish but I'm terrified to be honest. The consultant has explained that it is terminal, but she also talked about 10-15 years lifespan. However this doesn't seem to be the picture looking on various Cancer info sites. My husband is being very positive and practical and so brave and strong, but I am so worried for the future, mainly for our children. I don't know what to expect at all and was just wondering if anyone could share any experiences, I would be so grateful.
I should add that we are actually separated and have been for a while, my husband has a new partner, and although he is keeping me informed on what is happening to him I feel very isolated and alone. He (quite rightly) and his girlfriend are receiving alot of support from the medical professionals but as the mother of his children this also affects me.
Sorry if I sound selfish, I don't mean to, but I am so confused and worried at the moment. I've already lost him once and dealt with that but this has brought everything back to the surface. I want to help him in any way I can though.
Thank you.
Hello Ruth
That sounds like such a terrible thing to deal with and I can appreciate how alone you must feel with it, separated from someone you clearly care a lot about and has such an impact on your and your children's lives. 29 is unbelievably young (and this coming from a 49 year old!).
I don't know if it's of any help, but the Haematology team at Nottingham includes two specialist nurses, who are there for clinical purposes, but also provide support for patients, carers and family. My girlfriend comes with me to all my hospital appointments and has been able to ask questions (even silly ones) and understand what is happening as I go through it, which helps to allay her fears as well as my own.
It may be worth asking your ex if you can contact one of his haematology nurses for support, to ask questions, get answers and maybe quell some of your fears, or at least understand what it is you're/he's facing. Other than that, you can probably get support from the Myeloma UK organisation. I don't know who or how, but I'm sure you'll find information on this website.
When I was first diagnosed, only 3 weeks ago, I experienced absolute terror and shock, similar to what you may be experiencing. I hope it's helpful to hear that already I am in a different place, adapting to the medication and feeling much more accepting and curious about what's happening to me. But I don't have children or any dependents, apart from a cat – who has become very cuddly and in her own way provides loving support too.
I think it's important to let friends and family know what's happening and how you feel and let them support you at this time. Make some time for yourself to take time out away from children and responsibility, reflect on what's happening and have some fun.
For me, the realisation that we never know what life is going to throw at us and that this is just part of a curious journey is helpful, but I don't know if that will work for you, or maybe not just now.
You may also find it helpful to go to an Info Day, where you can meet other partners, carers, patients and experts. I'm totally new to this too, so I don't have answers, just learning it all myself, but I wanted to reach out to you so you don't feel quite so alone.
As one of my friends said (who is recovering from a heart attack at age 40, with a 10 year old son), I wish that when you are at your most afraid, you will feel that you are ok, and life is ok, and everything happening is ok.
Jet
Hi Ruth what an awful shock for you no wonder you feel frightened and alone .If I were you I would avoid searching the internet for information as a lot of whats out there is out of date and can be frightening .I agree with Jet the specialist nurses are great and very easy to talk to If you dont feel thats right you can ring the info line on this site , they are very helpful and will be able to answer your questions about treatment etc. It is very frightening to hear that someone you care for has an illness like myeloma but as your husband begins his treatment you will understand it more and you will also see him getting better too. To be diagnosed with myeloma at such a young age is awful but there are positives too , hopefully its been spotted before too much damage is done and being younger does mean your general fitness is likely to be better.New treatments are emerging all the time now so try and ignore the life expectancy figures if you can It is possible to get complete remission after a stem cell transplant , which is likely to be part of your husbands treatment Please dont feel you are being selfish its understable to be frightened but there are lots of lovely people on this site who will support you . Take care and please let us know how you are coping best wishes Bridget
Hi Ruth,
I am so sorry about the news about your husband….of course you are upset and worried about him, and for your children.
He is really young, I was 34 (with a then 2 and 4 year old)when I was first diagnosed with asymptomatic myeloma in July 2009 and I started treatment November 2010. When you first hear the news, it is terrifying, but, whilst it might not help right now, all I can say is that it does get easier as you learn more about the cancer, more about the treatment etc. For me, finding out information from this website, the specialists etc was a big part of taking the control back in a situation where I felt totally out of control. But be careful about what you google search as a lot of it is very scary, but to be honest, very out of date.
I think in terms of prognosis, people are talking more and more about longer lifespans but it is so individual. I read something really useful the other day, I think on this website, about how it is an average. And with that, you have to remember, there are a lot of older people who have other complications (hope I don't offend anyone with that comment), a large number of people who aren't picked up early like your husband, so have a short life expectancy, and lots of people who live for 10-15 years!
Perhaps you can talk to your husband about how you can be kept involved so that it works for him and his girlfriend, and for you….do you get on ok with her? It may be that they wouldn't mind you going to some of the appointments? But if not, use the Myeloma UK infoline to support you, and use all of us….it's why we're all on here….to help and support each other.
Also, you might want to join the Under 50 site too (go to Under 50's and take a look at Scotty's post) – that might help a little too.
Hope some of this might help, but don't worry about being scared and worried at the moment….it is really early days for you all at the moment…it is bound to be scary and we have all been there.
With lots of best wishes
Debs
Hello Ruth
I can relate to your worries MYELOMA is an awful diagnosis at any age but 29 is so young you will get all the help and encouragement you need from this site which may become important to you as you are seperated from your partner the hopital may be reluctant to give you any real information
Good Luck Jo
hello Jet
I have been reading your blog I hope you are feeling a bit better now I know the shock must have been terrible for you if its any consolation I did not lose my hair during trearment(CDT) your hair looks wonderful such a lovely colour
Love Jo 😎
Hi Ruth,
Welcome (?) to our little band! The advice about NOT searching the internet for answers is very good advice. IF there was a magic bullet out there loads of sufferers would have found it years ago ? sorry to be frank but there is not one. There are only two sites you need to visit one is the MacMillan site and the other is this one. You will find all the information you could ever want right here and it is up-to-date. Ask for the free information packs and take a real good look around the site.
I shocked by your Ex?s age 29, at 68 I am one of the older generation mentioned by Debs,and no I did not take offence Debs, and she is right this used to be an old persons decease. The average age, back in the good old days, was 70 for a Myeloma sufferer. Now it is getting younger and younger but the life expectancy figures still, in most cases, reflect the older person. I know off several people who have passed 16 years and are still going strong so take heart your Ex has not hit the buffers yet.
Your personal situation is very difficult but I do hope you can get alongside your Ex and his new Girlfriend.
Kindest regards
David
Thank you for your replies, it is helpful to hear from real experiences rather than statistics.
My husband has been put on a drugs trial, I don't know what for though, he couldn't remember all the names. I know one is thalidomide, not very helpful He had a third plasma exchange today, and another transfusion this evening, his proteins are very low now, and his blood count has risen – I don't know number at the moment (our youngest son split his chin open at nursery and ended up in a&e so only had a brief phone conversation whilst there).
He's been told he will have a stem cell harvest soon and may need a 3-4 week stay in hospital for this due to the impact on his immune system??? Can anyone explain what this process involves and what it does?
His consultant has also discussed bone marrow transplants with him for 'further down the line'. He has two 'full' brothers who he's been told both have a 1 in 4 chance of being a match. They've both agreed to be tested (I should bloody hope so too! lol)
I'm feeling more positive now, being back to work has helped me feel normal again and to focus on what is important. I only work part time so being back today was welcome (until my darling son fell and split his chin that is!)
Thanks again
Hi Ruth
What a horrid time you are going through. I am no expert but I will tell you about my husband. Stephen has mm, and had a Stem Cell Transplant in the summer of 2009. He may have a second one later this year.
I can only tell you what happened to Stephen when he had his Stem Cell Harvest and Transplant. Others may have a different experience and I know you will get many replies on this site from people offering advice and support.
Stephen was on a cocktail of drugs to boost his bone marrow/stem cells and then had a course of injections to make the little blighters come out and lurk in his blood. The harvest (sounds spooky doesn't it) consisted of attending the hospital as a day patient and being hooked up to a needle in the crook of each elbow (Yuck I hate needles) one side removed the blood, sent it into a cylinder, spun it off and separated the stem cells from the blood. The stem cells were then cleaned of as much of the cancer as possible and stored. Stephen spent time in Kings College Hospital (about 20 days) having his mm bad cells wiped out with chemo (this was when his immune system dragged into the ground) and the Stem cells that they had harvested from him put back into him.
The good news is that many people (including Stephen) go through this process with very little suffering. The bad news is that once you have had your immune system wiped out you become neutropenic (sp)for a while then you hsve to be careful of catching any infection and have to eat a really boring diet. -imagine best steak being frazzled instead of blue and scrambled eggs being very well cooked instead of light and moist. That was the first thing I cooked for Stephen when he came out of hospital.
When your blood counts go up you are allowed slightly more interesting food and I remember we went out for lunch when he got the all clear and Stephen ordered SALAD which had been banned for weeks (sad ay to be excited about salad). After a short while you get back to eating as you would normaly but Stephen has been advised to try, where possible, to stay away from colds and infections eg if your best friend has a raging case of flu don't visit
Stephen managed to produce enough stem cells during his "harvest" for 2 transplants but if people don't manage to produce enough a sibling may be tested to see if a donor transplant would be possible.
The survival rate for mm is getting longer and longer and Stephen's consultant at Kings told us that MM is considered "quite sexy" by researchers at the moment so there are lots of very clever people out there determined to cure this cancer.
Please do not trawl the internet for information. So much is outdated and badly informed that it becomes very scary. As well as "us lot" on this site there are mm nurses etc that can answer medical queries that you might have
Do keep in touch. Good luck Gill
Gosh, no wonder you're confused and I can relate to the 'bad news' on some of the sites. You're best to stick with sites like this one with up to date and accurate information. I'm 9 years post diagnosis and I know some on here have been patients longer than that.
It is a very frightening thing at the start but you will get in the swing of things and the ups and downs – I can understand your worries with such small children, it must be such a concern all round.
However, all is not doom and gloom and the treatments do work so take each day as it comes and don't try to take in too much at once, there's a lot to learn.
Good luck on your family's journey.
xxxxxxx
Hi Ruth
Sorry to hear about your bad news.
My husband got diagnosed just over 2 years ago but he was ill for 1yr before that. He got told his age was young then and he was in his 40's and because of that lots of good things were on his side.
Every body deals with this illness differently., because it is such an individual disease.So don't take too much on at once, learn to live together with this illness.
My husband had tablet form chemo and blood transfusions when he was eventually diagnosed. He was told he just had artheritis at first. After the good response from his chemo tablets, he has a SCT done. They tried to do everything while he was responding well.
He also had all different treatments and responded well, then had bad times. Just because of that does not mean your husband won't respond well. Some people live over 10 years or more at stage 3 some people don't
My husband died December 24th 2010. He was an unlucky one. [b]But[/b] and I mean[b] But[/b] it does not mean your husband will go the same way. So try and think positevly.
All the best
Roz
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