[nikkihamiltonParticipant]

Hi, I was diagnosed with myeloma 3 weeks ago, its so scary.  Its constantly in my head, so many questions, so many worries.  I try not to google but it’s difficult.  Then I saw this website with fellow sufferers and their families and just thought I’d join.  Maybe I will see some of the questions I want answers to. It’s hard to know what to say but I’m sure I’m not the only one who felt like this.

Nikki

[jcr2468Participant]

Hi Nikki

I don’t think your head “will ever be the same again”, I was diagnosed back in Jan 2011 and my head still “whirls” from time to time.

We all have different experiences when dealing with our Myeloma but i’m sure if you ask the question some one on the site will be able to answer.

I found that for the first few appointments its always best to take someone with you, at least then if you don’t take anything in the other person may do.

So ask away!!!

Julie

[nikkihamiltonParticipant]

Hi Julie

Many thanks for you reply.  Your the first person I’ve spoke to who has the same type of cancer.  It doesn’t seem a very common cancer and trying to get my head around it is a nightmare.  When I read all the paperwork they give you from the hospital and it tells you who falls into the category, it just doesn’t make sense.  I’m a 43 year old healthy, youngish woman.

I started chemo 3 weeks ago so have just completed my first cycle. Luckily no side effects as yet, just tiredness.  The multiple myeloma I have is in my spine, where is yours ?  Did you have to have a stem cell transplant ?  Theyve told me I wont lose my hair until I have the transplant.

I think it will be good for me to just read peoples questions and answer on this forum.  I googled something the other day and I really wish I hadn’t. It’s the not knowing what the future has for me.

Thanks again for making me feel welcome xx

[jcr2468Participant]

Hi Nikki

I’m coming up to 47 so was the same age as you when diagnosed. I went to the Doctors with a numb bum and 4 weeks later was told I had Myeloma!!

I had a Stem Cell transplant in sept 2011 – I did lose my hair but was surprised how quickly it grew back. I think initially i had 7 cycles of chemo before my SCT so it is a bit of a slog.

Don’t google anything it will scare you to death!! Trust me when i say its not all bad, you are going to have good and bad days but as I was told you have your age and health which is a positive when fighting the disease.

I was treated at the QE in Birmingham and I have to say they are fantastic, they are really looking after me.

Try and stay positive. I will answer your questions as honestly as i can.

This is my work email so if you need me to help with anything else i will answer in the morning

 

Take Care and stay positive

Julie x

 

[nikkihamiltonParticipant]

Thanks Julie x

[keithmtParticipant]

Hi Nikki,

So sorry you’ve found yourself in need of this website but this is the best place for information. Just remember that everyone is different and your journey will be unique to you but as you progress you will find the people on here who can help you most.

You say that your Myeloma is in your spine but it’s actually in your bone marrow, so all of your major bones. I know it feels very scary at first, we all felt the same. The amount of info you get from the hospital is overwhelming and the whole thing feels very daunting.

I was diagnosed last August and 2 weeks ago after my drugs and stem cell transplant I am now in complete remission. I was determined to beat this crap, I have far too many things to do with my life to let this stop me and here I am ready to enjoy every day.

Keep focused on beating it and take one day at a time. There will be some tough days ahead but you’ll get through them. People on this site are fab and will help you through this.

You’re amongst friends here.

My best wishes and thoughts.

Keith x

[wendyannParticipant]

Hi Nikki.
I am also a newcomer to the forum (as of yesterday!) but already have been encouraged with the replies I received.I am 67 yrs old but like yourself considered that I was as fit as I had ever beenI was diagnosed on vague symptoms on of which weight loss but only 5-6 lbs.The query arose in a routine blood test and everything started moving then (back in Feb/March)
I started my first cycle of DTC chemotherapy only yesterday so I am waiting for any side -effects to appear!This should hopefully lead to stem cell transplant at Queen Eliabeth Birmingham when the time is right.
I certainly agree that one should choose any websites to read wisely.There are some which make one’s hair stand on end!
As the others have said keep positive-it’s the only way to go.
With very best wishes.
Wendy

[andygParticipant]

Hi Nikki and Wendy
Welcome to the club that none of us would choose to join.
First multiple myeloma as you may already know is a cancer of the blood marrow. It called multiple myeloma because it can present in many different places. The most common first symptom is back pain. Which was my introduction to meyloma. Other indications are broken bones for no apparent reason.
Unfortunately at the moment there is no cure though great strides have been made towards a cure in the last few years so a cure maybe just around the corner.
The usual treatment plan is chemo, usually CDT, then hopefully a sten cell transplant (SCT) which will hopefully give you a long remission before a relapse. At relapse you maybe tried on another chemo therapy and hopefully go through to another SCT. The gap between remission and relapse varies widely.
It’s not an easy journey at times and not everything always goes to plan. No two journeys are the same. Different people react differently to the drugs.
Any questions you have this is the place to ask them. If you feel the need to rant, rave or even scream come on here and get it off your chest. You will always find a sympathetic ear.
I wish you both well as you start out on the myeloma journey and hope your treatment is very successful.

Every day is a gift

Andy xx

[martinebbageParticipant]

Hi I have  been diagnosed this week, with the treatment meeting on Monday. I guess  I don’t know wheat I don’t know. I was advised to go on this site and it is great to see comments from others with similar challenges. We are all different and I am sure there will be some tough times ahead but I can’t do anything about it, so I will fight it every inch of the way and do as I am advised and see where that takes me.

Great to see I am not alone will just have to see how it goes.

[nikkihamiltonParticipant]

Morning Keith Andy Wendy and Martin,

thanks so much for the replies. The steroids have given me insomnia so up at 4 am.

I know that this site is definitely going to help me. Hearing inspirational stories and reading accurate info has gotta be my way forward. For the past 3 weeks I’ve felt like a dark cloud is following me everywhere and all seems doom and gloom. But for me, posting on this forum is another hurdle jumped.

Martin you will probably be feeling the same. It’s just such a shock. It took me 2 weeks to get over that. I’m now coming to terms with it a bit better but its still shocking. I hope you are feeling ok and check on here if u have any questions. . It’s only been 3 weeks for me. I’ve had first chemo cycle, 3 sessions of velcade and pils and one bone infusion but if u want any info on that let me know.

I am getting nervous about a meeting I have tomorrow with my specialist at the Churchill in Oxford. When I was originally diagnosed it was from a bone marrow biopsy. At the same time they took a piece of bone. I will get the results for this tomorrow and all I can think of is “what if its in my bone as well ?”  Any thoughts on this anyone ?

Thanks again for your replies. It means a lot.

Nikki x

[wendyannParticipant]

Hi Nikki,
Hope all goes well for you tomorrow.
I had marrow and bone biopsy a few weeks ago.Plasma cells were 22-25%- not too bad-bones OK on skeletal survey so presume bone biopsy was too(didn’t ask about that).However although consultant said ‘kidneys weren’t too bad’ I was put on CTD and Alpurinol to prevent further damage.
From what I read in the forums it seems that the Myeloma specialists have things well in hand,with lots of alternatives to use when the need arises. I think the main thing is to try not to get too depressed about the diagnosis-and hope to carry on a fairly normal life throughout the initial treatment.(Not easy I know-but gets easier after a time)
Anyway, just to say good luck really—–
Kind regards.
Wendy

[andygParticipant]

Morning Nikki and Wendy.
First of all steroids will give you lots of sleepless nights it’s a very common side effect of Dex. They lift you up and you’ll talk a lot! Maybe eat more than usual and possibly even work around the house doing odd things! Then you’ll crash and become moody and argumentative. Such is the joys of dexamethasone. Oh and sweats is also another common side effect.
Remember to keep up your 3 litres of fluid a day. Your kidneys come under pressure from the drugs and myeloma itself.
Nikki myeloma lives in the bone marrow not the bone itself. It causes damage to the formation of bone and softens them which in turn causes them to be easily damaged. That’s why you have a skeletal survey when diagnosed so they have a reference point and to see how much damage has already been caused.
My major problem is my back with my vertebrae being damaged and resulting in losing 3 inches in height!
You will be given bone strengthening infusions every 4 weeks usually Zometa.
I found the first few cycles of chemo very harsh and picked up lots of infections which isn’t good for myeloma patients. Your body does adapt to it though. Just as well in my case because I’ve been on chemo since oct 2011.
I can’t emphasise enough that no two journeys with this horrible disease are the same. Some sail through treatment and SCT and have a long remission. Others struggle to get to SCT. There’s lots of variables but with the new drugs coming through treatments are getting better and easier.
Don’t forget ask any questions you have on here no matter how daft you may think they are. There should always someone to give an answer.
Most important keep your fluid intake up – 3litres a day minimum and stay away from ill people. Infections are dangerous because myeloma depresses your ability to fight off infections. Oh and if your temp goes above 37.4 ring your day unit or haematology ward for advice.

Every day is a gift

Andy xx

[nikkihamiltonParticipant]

Thank you Mandy and Andy. It’s great talking to people with the same disease. It’s really helping me.  I’m going to make sure I drink more water. I’m drinking everything but water at the mo and the steroids are making me hungry all the time.

The last time I saw the specialist was when he confirmed it was myeloma so I think my mind is in overdrive thinking its gonna be more bad news. If it could be any worse that is. It’s the not knowing what’s going on in Your own body.

Thanks again. Hope your all feeling good today xxx

[wendyannParticipant]

Hi Andy,
Good morning! Thanks for all you information and good advice. I have been drinking my 3 litres a day since before I was diagnosed having read it on one of the websites. Figured it couldn’t do any harm anyway.
I am just starting to feel ‘stunned’ after thalidomide so nothing much will be done today on the intellectual front-so nothing changing there!
Pleased you mentioned the sweats with steroid- I did wonder what was happening there.
Keep advising us.
Thanks again. Wendy

[robbojnnParticipant]

hi,i’m 43 yrold male, diagnosed 10 days ago going to consultant tomorrow for bone marrow biopsy results find  out  advanced it is and what treatment they  going to start me on …

all this from a pain in my shoulder……..i have a beautiful wife and 2 sons 14 and 7…very scared and bewildered

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