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Hi everyone, I’ve just been diagnosed with Myeloma and am feeling completely shell shocked. I first went to my GP with rib pain back in September and he diagnosed Costochondritis. The pain got so bad that I went to A&E where they took a chest Xray and sent me home saying it was because I was stressed. After a few months the pain spread to my back as well so I went back to my GP again and he diagnosed Fybromyalgia . The cocodomol tablets I was prescribed gave me a blocked bowel and I was admitted to hospital where they took another Xray and a Cat scan. Apparently this showed thickening on my ribs, breast bone and verterbrae but this was not picked up on and I was sent home with laxatives for constipation. By now the pain was unbearable and I’d had to give up work ( I was a special needs teacher ) . I went back to my doctor again and he suggested seeing a Chiropractor and I had my first session last week. I cannot begin to describe the pain I was in after this but thought it must be doing me some good so went back to my Chiro last Wednesday. After trying to work with me and seeing the pain I was in he stopped and said I should see my Dr and ask for an Xray of my spine. I did this and duly went to Hospital yesterday. They took blood tests which indicated something was wrong so then did an X ray and another Cat Scan. From this they saw lesions on my spine, ribs, breast bone and hip and a diagnosis of active Myeloma. I feel so angry that the first Cat Scan was ignored and so frightened of my future prognosis. I have not yet begun any treatment – sorry for the long post, I just needed to ‘talk’ to others who understand
Hi Bijou
Sorry to hear that you are having a rough time of it and have joined the Myeloma UK club. Hearing about a diagnosis of Myeloma is a shock to everyone. Late diagnosis seems to be one of the common problems with Myeloma, in my case I was in agony for two months and could barely move, but had been prescribed Ibrupofen and Paracetomal for my back pain by my GP. This was before a physiotherapist suggested a blood test which started my Myeloma journey.
There are lots of helpful leaflets and other information on the Myeloma UK website. Also it might be useful to see if there is a local Myeloma support group in your area, it is always good to speak to other patients, it helps to reduce the sense of isolation.
You will find out that Myeloma is very individual depending on all sorts of factors. My advice is to ask your consultant or specialist nurse lots of quesions if you are worried or unsure.
Hope this helps.
David
Hi Bijou
so sorry to hear you have been diagnosed with Myeloma. Yes its awful the medication and the process we all have to go through but its not the end of the world! If u can, stay as positive as possible, even though u may have some awful side effects from the medication. I read your story with interest, i was diagnosed in early February 2014 with Myeloma. My story in the beginning not so different to yours; i awoke on a November morning with a very stiff and painful neck.was going on holiday early January for a month to India, so like you wanted this rectified. I went to the chiropractor for 2 visits, did not make slightest difference. Then luck was on my side if you can call it luck. Went on holiday with stiff neck and feeling sick!! On plane pain got worse. When landing could not stand up, checked in hotel could local doctor who thiught it was a muscle spasm h came back following morning and did not like it so he admitted me to local hospital who did a scan . This time was 12:15 by 7:30 that night i was told i had a plasmacytoma on the octipal bone. They said they could treat me but afvised that i fly home and get treatment. Story undold was flown to Mumbai on airambulance and then first class to London where I was admitted to Addenbrooks Cambridge.( not sure where u live, but if u can get referred to Addenbrooks) go for it. Within 48 hoursrs had all the tests including bone marrow. Myeloma diagnosed. I had intensive radiotherapy and four sessions of CDT . I was caught early . Sorry to go on in this response, but i have now been in remission for over a year. Go back end October. I have 6 weekly Zometa infusions for my bones. No other treatment. Eventually it lwill come back but my message to you is ask loads of questions and remember its not all doom and gloom. Gooluk
On diagnosis the consultant said to look at myeloma as a chronic disease, rather than an incurable cancer and that has helped me. I am now 18 months in complete remission after an auto transplant and just coming to the end of a 3 month holiday in Europe ( I live in Australia) so you see, don’t despair as there is life after treatment. I was also in special needs as a SENCo in an inner London high school, but retired last year at 64. I just knew I wouldn’t be able to handle the stress of the job after the side effects from the radiotherapy and chemo treatment.
Carol
Hi Bijou
So sorry to hear your story & I’m not surprised you’re feeling frustrated and angry. When do you see your consultant again ? Perhaps it will help when you have a clear indication of your treatment plan.
In my experience there is always someone on here to listen and lift your spirits & with a wealth of experience around whatever treatment/tests we face. Remember you can call the Helpline nurses too; personally I felt very alone when I first heard the diagnosis “myeloma” & found talking to them helped alot.
Sending love & hugs,
C x
hy bijou. i like yourself. waited a while going through the whole process of misdiagnosis till 2brokeb vertebra showed up and the inevitable myeloma diagnoses . That was jan 2014 since then. cdt and a stem cell transplant in august 2014 in the freeman newcastle im in remmision and like most people on this forum. live my life to the full. holidays weekends away when possible and enjoying my. family remember there is life after this. shock wears off someone on the forum says to think of it as a chronic illness rather than anything else we all hope a cures around the corner. good luck xxx
Thank you to everyone who has replied offering advice and positive stories. I fully intend to beat this and refuse to be defined by the fact I have cancer. I should hear the result of my blood test this week hopefully begin the fight back .
Hi Bijou
Good luck with your blood results. Try and get them to write them down for u. I have kappa light chain myeloma and they measure my light chains and other bloods. I dont have to go back until end of October. I have been treatment free for over a year. I decided SCT was not for me, so going with regular treatment. My light chains are 102 but they not doing anything more yet as all other bloods and kidneys are good. When i started my myeloma journey my light chains were 357 they went down after radiotherapy and plateaud at 47 after 4 months CDT. .i feel really good, not tired no pain as others have had so count myself lucky. Who knows when they will put me back on medication but i not worried about it. Have just booked a holiday to India in January. Just keep smiling.
Hello Bijou! Can’t really add anything to the other posts but just to confirm there is life after diagnosis of myeloma. Husband diagnosed in Jan2009 after discovering a lump (turned out to be plasmacytoma) on his ribs. 20 sessions radiotherapy got rid of the lump , then followed 6 months of CDT (chemo) which wasn’t too bad and then stem cell transplant which he said was “do-able”, following that 5 years drug free and normal activities. Had more chemo followed by 2nd STC in Dec last year (due to another plasmacytoma) and now back to his gardening, DIY and holidays taken and booked. He is 68. Meeting others in same boat at support groups is helpful and encouraging. Best wishes.
I’m feeling like Alice in Wonderland in this strange crazy world of Light chains and stem cells – none of it means anything to me at the moment as I hav’nt been appointed a specialist yet and don’t yet know what kind of Myeloma I have. I was awaiting the results of a blood test today which would tell me more but when I phoned the hospital they had lost the blood sample so I have to go back tomorrow morning to have another lot taken. It all seems so bloomin incompetent given that I first went to my GP with rib pain back in September and the hospital totally missed the lesions shown on my cat scan in April , it would would be funny if it were not my life on the line ! . Also today I’m noticing it harder to breathe – i can only describe it a bit like having asthma, is this usual for Myeloma ?
Trying hard not to panic but feeling very scared .
Oh dear – I’m sorry you are having such a difficult time. It’s bad enough being where you are without lost bloods & yet more confusion.
Could you talk to your GP about feeling breathless while the hospital gets itself organised? I think most people get their first haematology appointment within 10 days or so of the initial findings – I imagine this set of blood tests are ahead of this?
The Myeloma Helpline nurses are wonderful – don’t hesitate to contact them for more advice or support. You can e-mail if you prefer.
When you have more details from your test results eg paraprotein levels you will probably find it easier to use the information on this website to help interpret where you are.
It is scary hun..and it is crazy… but slowly the fog will clear for you- hang in there.
Sending love & hugs,
C x
Hello again – just to say that your breathlessness could be due to the lesions you mention – if they are near your lungs, ie on the ribs, could be due to their pressure on the lung. That’s what happened to my husband but after initial sessions of radiotherapy the breathlessness went. I can understand the “Alice in Wonderland” feeling but remember there are people on this site who have not only been there, done it, but have worn the T–shirt out!!!
Hi Bijou ,
Sorry to hear you have to join our group, but you will find lots of help on here, like Carole D suggests, there are people on here who have been there and got the-shirt so to speak.
i was diagnosed in 2003 , and despite a long and hard road with lots of treatment, i am still around and kicking 😉 so don,t despair, lots of help, and treatments,and hopefully a long life for you yet.keep your chin up.
Regards.
Mike. xx
Sorry to be asking so many questions but I’m feeling so confused. Today the hospital told me they had’nt lost my blood sample after all but that it would take a week to be analysed. A week ??? – that seems a terribly long time to me I forget what the test was called but it was to determine if the cancer was in my bone marrow or not. Does this sound right to you ?
Hi Bijou.
Welcome to the club that no one wants to join. You’ll find us a friendly bunch – well I suppose that depends on our Dex cycle. No question is too trivial or daft. Anything your not sure of ask away – and I mean anything because sometimes things can seem a bit personal but we’ve all had some problems of that nature and needed some advice/tips on how to cope.
Oh and don’t be afraid to come on here to moan about things anything have a good old rant and rave as well scream at us if you feel like it we won’t be offended and hopefully we’ll be able to help you. And as the old saying goes it’s better out than in.
Late diagnosis in myeloma is common. Doctors on average only see one or two patients with myeloma in their careers. MyelomaUK are making doctors more aware of myeloma by arranging conferences and giving awareness packages to GPs throughout the country.
Normally blood tests come back the same day when on treatment. Two hours if on a quick turnaround. Well at our hospital they do. Your bloods may have been sent to another hospital to be analysed. Paraprotein(PP) test, the measure of the active protein, results usually take two days. If you do show PPs you will probably have a Bone Marrow Biopsy(BMB) as well.
After all the tests are in they will decide how to go about treating you. The normal first line treatment is Cyclophosphamide, Thalidomide and Dexamethasone (CDT) which will hopefully get you to an Auto(self) Stem Cell Transplant in 6 – 8 cycles. Your lesions may also be treated with radiotherapy.
Hmm I think that’s enough for now. It’s my Dex day so I don’t sleep much and I tend to ramble a lot! Don’t forget to to ask your questions whatever they are.
Every day is a gift.
Andy xx
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