[wendyannParticipant]

Just to wish you the best for tomorrow.This disease really is sneaky showing up when we least expect it.
I am sure you will have a lot of support from your wife and sons which is very important at this stage.
Keep us posted.

With very best wishes
Wendy

[martinebbageParticipant]

Hi Robbo

Good luck tomorrow,I was diagnosed last week I am 55 with a great wife and two daughters of 14 & 16, I know exactly what you mean and have been going through. Mine started with a  very sore ankle, I had a bone marrow and MRI last week this was after blood, urine and full body x rays. Went back today to see my specialist, whilst I have got Myeloma it is not active enough to have treatment yet, they are going to be keeping a very close eye on me. I am told that at sometime it will attack somewhere within my body, I am told it could be 1 month 6 months 2 years or more, even if I did have treatment all is not lost, we met  a friend while visiting hospital with an unrelated cancer she has been given 3 months to live. This is one you can live with and even if you have treatment you can go in re mission for years. Really good luck for tomorrow hope it goes well for you and your family, keep positive.

 

• This reply was modified 9 years, 10 months ago by  martinebbage.

[martinebbageParticipant]

Hi Nikki

Thanks for your good wishes. You will see my post to Robbojnn later in this thread that explains my prognosis I got today, if you read it you will see that I have every reason to be positive. I count myself as very fortunate, I hope your treatment is going as well as it can good luck and keep positive.

[nikkihamiltonParticipant]

Morning friends

Robbo I’m sorry to hear what your going through. It’s a tough time and the not knowing is so scary. Good luck for your meeting.

For me Friday was a crap day. It started with a letter copied to me from my specialist to my doctor telling him my diagnosis and prognosis. It’s felt like I’d been told all over again.  My meeting with the specialist was a mixed bag. He said my myeloma is at stage 2 and the bone biopsy came back with 90% bad cells. I was shocked by this and thought I had bone cancer as well but he assured me I haven’t. Still don’t really understand it. Any thoughts ??

The good news was I can go swimming. As long as its not too packed. Thank god I hate not doing any exercise and the steroids are making me feel fat. Also he told me I will have a 6 week gap between chemo ending and stem cell transplant so I can get my hair and eyebrows sorted then. Was panicking a bit about that.

Martin I’m really pleased for you that it’s not active at the moment. Thank you for your positive thoughts.

Hope everyone’s feeling well today

nikki

 

[jcr2468Participant]

Nikki

Don’t panic!!!

Before my transplant i had to inject myself every day to “grow” my stem cells ready for harvesting. If i remember correctly i injected for about a month and then spent nearly all day in hospital having them removed ready for transplant.

My hair fell out but my eyebrows & eyelashes didn’t – I think I only lost the hair on one leg and one arm!!!

Don’t get me started on the effects of Steroids – I felt fat too but once i stopped the weight came back off so don’t worry too much.

Keep Positive

Julie x

[SalParticipant]

Hi Nikki!

I’m sorry you have all this to deal with. Just a thought – have you been allocated a key worker? It’s usually a clinical nurse specialist or someone with a similar role? If you haven’t, do ask. It might be worth you sitting down with someone like that who can explain things to you and answer your questions. It is really hard to understand myeloma. I’ve found the best explanation in the children’s book that you can order from the publications list, but I do think the best thing is to have someone you can ring up or drop in to see, who will take the trouble to get to know you and who will be around when you have your treatment.

My husband accidentally wasn’t allocated a key worker till a few months down the line, but she has been fantastic and keeps complaining that we never bother her! She went to see him yesterday, as he’s on the ward at the moment, and went through all the details about the stem cell harvest, which is hopefully coming up in about 2 weeks’ time.

I know others have mentioned the helpline, and I’ve received good advice from phoning in, but it is really good to have someone you can talk to face to face.

Best wishes,

Sarah

[jane-wrenchParticipant]

Hi there Nikki – and other newcomers- just to give you hope- I was diagnosed at the age of 45 with both myeloma and Amyloidosis – but that was 18 years ago! In those days the prognosis was not good – median survival of 2 years they said – but I’m still here! Had a stem cell transplant in 1996 – 5 years remission – then another in 2001- with over 10 years remission when I ALMOST forgot I was ill! Free light chains started rising again and I started velcade in 2012 – and have been having various combinations until last month – fingers crossed now that bone marrow biopsy last week is ok and PET scan etc tomorrow ok – and then I may be drug free again – obviously there have been bad times over the years but I feel very lucky that I’m here and able to lead a normal life- I still go to the gym 5 times a week if I can, and try to fit in as much as possible in the way of holidays etc! When I was diagnosed I found my blood group is B positive – so I feel that’s a sign and should be my mantra! There always seems to be something on the horizon that I need to be ok for – in the early days it was my children’s GCSEs then a levels then Uni -and now it’s their weddings! This myeloma organisation didn’t exist when I was diagnosed – but over the years I have found it very useful, reading other peoples stories, and also bring able to phone for advice.

Good luck to all of you

jane

[wendyannParticipant]

Hi Jane,
Thank you for sharing your experiences on your posting.That is really encouraging and a boost for all of us.Amazing!
With very best wishes for the future

Wendy

[HarmonyParticipant]

Hi Nikki,

I know how you feel! I was diagnosed with asymptomatic myeloma 9 monthe ago at the age of 40 and I’m still waiting for someone to wake me up and tell me that it is a nightmare. I continue with my normal life but I carry a burden which ties the pit of my stomach into knots. I can function normally- laugh, have fun etc – but reality whacks me in the face and I have to take a sharp intake of breath. I realise that I am lucky to be smouldering but can’t get rid of the feeling that a grenade is being held over my head. Every twinge suddenly has more significance as I wonder if things are developing. Other stuff still continues- my marriage is not great so I feel as if I’m going through all of this on my own. In fact, sometimes I wonder how my husband can be so callous and insensitive and this really hurts. I feel jealous of those, on this site, who feel loved and supported yet somehow I manage to avoid serious depression. I guess it’s looking at my kids, who are 7 and 10, and thinking about my love for them that makes me put one foot in front of the other each day. It’s a cliche but I guess all any of us can do is take one day at a time and value ourselves.

[nikkihamiltonParticipant]

The support on here is truly amazing. Such inspirational stories.

Thank you Jane for giving us hope. To be still fighting 18 years on is just brilliant. When I think of the time they’ve told me (4-5 yrs) I’m going remember your message and try to be positive. My husband was a bit unsure of me using the forum but when I read him that he’s changed his mind.

Hi Chrissie. I’m really sorry you to are going through this. It really is life changing. Like you said we have to take One day at a time. I’m going to try thinking like that. At the moment all I can see is no future.  I hope you have lots of friends and family there to support you.

Thank you Julie for the info on the stem cell transplant, I haven’t got a clue. I feel like I’m being so vein to be worrying about hair loss but to begin with it was my main worry. Ridiculous I know. Thanks for the reassurance.

Thanks Sarah. I do have a Macmillan nurse who I’ll be seeing tomorrow so I think I will have a chat with her. Only thing is I just know  going to start crying as soon as I do. I’m so blinking emotional but I’m sure she’s dealt with that before.

Good luck to you all. Tomorrow I will be back up the hospital. Starting a new trial for my bone infusion then my chemo

Nikki

[andygParticipant]

Hi everyone.
Welcome to the new newcomers to the forum.
Nikki – myeloma is cancer of the bone marrow, plasma cells in reality. They go wonky, for want of a better word, and start producing paraproteins, which serve no useful purpose.
They compete with your white cells I think and this is why you will become susceptible to infections and find it hard to fight infections off.
They also interfere with the formation of bone and this results in the softening in the bone.
Sometimes holes appear in bone too and this can happen anywhere from head to toe. The first indication is aching bones then maybe painful bones but sometimes the first you know of it is when a bone breaks for little or no reason. You’ll become a friend of the X-ray and MRI scanners.
I can’t understand why you were told 4-5 yrs when everyone’s myeloma is different and everyone responds differently to the treatments. There is a quote that 20% of people diagnosed with MM die within six months but these are old statistics and cover people who would of died anyway with or without MM. It’s not helpful or accurate.
Your time with MM will be individual to you there will be similarities to other journeys but essentially your journey will be almost unique.
I also had 90% “bad cells” at first BMB I’m surprised about going swimming I was advised not too but I guess that all depends on your blood test results.
Right it’s late hmm or early it’s after 2am let’s see if I can beat the Dex effect and get some sleep.
Good luck at the hospital – oh a side effect of Zometa, the common bone strengthener, is flu like symptoms. IE achy bones and joints not to bad but noticeable.s

Every day is a gift.

Andy xx

[nikkihamiltonParticipant]

Hi Andy

Thanks for the info it’s very helpful. Trying to understand the disease is hard for me but the way you word it is much easier to get my head round.

I think the dr is letting me go swimming as I’m feeling so depressed about it all and it will make me feel better. Mind you I haven’t had the energy to go yet. Dex days today and tomorrow so they should help.

The life expectancy he has mentioned twice and also in my letter, but both me and my husband are thinking the stats are poor due to the majority of people with the disease being over 60. One lovely lady on here Jane is still fighting 18 years on. This really pleased me and has given me a lot of hope.

Hope you got a good sleep and thanks again

Nikki

[HarmonyParticipant]

Hi Nikki,

The statistics are dire but in my view, this is due to 2 things. The first thing is that myeloma is hard to diagnose so a lot of people are probably diagnosed when the disease is very advanced. My diagnosis was purely accidental (routine blood test) and I’m pretty certain that as a busy working mum, I would not have discovered this disease until it was in its advanced stages. I would have explained any bone pain away to myself – too much bending when doing the weeding, too much lifting etc. I would have normalised fatigue – rushing around too much, stayin up too late. It would have taken ages for me to try to fight to get a GPs appt and a million home remedies would have been tried first- I’m certain that I’m not alone in this. What I’m trying to say is that by the time that people eventually investigate, the disease is probably very advanced. To top it all off, GPs and practice nurses are pretty ignorant about this disease anyway. My practice nurse asked me where my myeloma is.
The second thing is that this is a disease of the elderly so people would have died anyway due to age. I keep reminding myself that we r no different 2 anyone else- there are no guarantees for anybody. We r all mortal. Just a few weeks ago, a 22 year old boy in my neighbourhood tragically crashed his car and died. I’m trying my best 2 focus on life rather than death. I find Tom’s posts particularly uplifting – although I haven’t read them for a while. I’m sorry that u feel depressed at the moment. I too find that I’m never far away from tears and often have to swallow and suppress them.
Great advances in treatment r being made. Years ago diseases such as TB would have killed people – look how far medicine has come. I reckon that we’re only a short way away from a daily tablet which will maintain our condition and allow us to lead a normal life.

[rebeccaRParticipant]

Hi to all you newcomers, welcome and good luck with it all. I have just read this thread and am so surprised that you are given a prognosis in years with all the new treatments coming up changing the game plan. I was diagnosed at 50 with kidney failure and was lucky to survive but I did/do. I wasn’t eligible for trails as they didn’t think I’d get to SCT and was given velcade. I did get to SCt at Xmas and am back to normal albeit the kidneys (but not on dialysis). My Dr always refused to give a prognosis as stats are based on older treatments and everyone is different. However, a few years ago without velcade (kidney friendly) I would not have lasted 4 months (actual stats) and here I am, well, working and as normal as I can be after all this! Everyone try and remember this is an individual disease that does not affect any 2 people the same – I have read of someone with aggressive myeloma who has been in remission for 9 years, met a lady at the hospital who’d at it for 12yrs and not had an SCT. It’s important to stay strong and be hopeful – the younger you are the stronger you are to fight it (tho that is not to say I wouldn’t trade up to getting it at 70yrs instead with more life behind me than on front of me!) My biggest personal advice, based on my own experience, is concentrate on your mind and let the Dr take care of your body. This is the biggest mind game you’ll ever have the unfortunate pleasure of playing – I have read lots of books on Cancer.If you read as many as I have you will come away with a clear message that your mind does affect your body and your healing. The more stressed you the more it can negatively impact your immune system. Breathing exercises, yoga, mindfulness, visualisation techniques can all help you through this difficult time. Sceptical or not – at this stage it’s all worth a punt – it has helped me immensely as I feel you need to be calm throughout this ordeal and that is very hard to achieve without seeking out something different to get there. Do stay strong and ever positive.

Rebecca

[andygParticipant]

Hi all.
I agree with all that Chrissie and Rebecca say.
Though I’m not as optimistic as Chrissie about a daily tablet to maintain our condition. My reason? It’s because myeloma isn’t a single disease or maybe that it’s not caused by a single entity. That is why we all have different journeys and react differently to different drugs. Genetics are starting to be used to determine the kind of myeloma you have and they will enable the medics to prescribe the most effective drugs for the type of myeloma you have. As usual the cost implications are holding up this diagnostic tool but I think it is starting to be used in the USA. So unfortunately I don’t think a one drug fits all will be developed. A cure will be similarly problematic. Of course once genetics identify the most common form of myeloma the drug companies will concentrate on this group to maximise their profits. There will sadly be winners and losers in the myeloma family. These are just my thoughts.

Nikki – I remember now why I was told not to swim now! It was because I had a Hickman line in.
A few more Dex side effects hiccups and constipation. Though I’ve found most chemo drugs effect your errr motion to some extent.
Another good tip I was given is to keep a daily diary of how your feeling what drugs you’ve taken and any side effects a pattern will emerge and you’ll come to know what to expect and be prepared for it. This will give you back more control over your life. Diaries are available for free from this web site.
I’ve had a difficult journey with myeloma and my attitude is to try and live as I was before diagnosis. Obviously there are things I can’t do now like work! Or run – I used to do marathons but we get away now as much as before diagnosis abroad twice a year to the lakes a couple of time a year too. Though we know those plans could fall through if I take ill.
Take each day a day at a time and if you feel too tired to do anything do nothing listen to your body. Oh by the way fatigue is a common side effect of myeloma.
Right that’s my post Dex ramble over.

Every day is a gift.

Andy xx

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