[pb42Participant]

Recently diagnosed and trying to stay positive but now feeling not so as another hospital letter dropped on mat! Is it normal to have a xray after mri? I do not know results of mri yet and letter does not state what part of body I’d being xrayed. I was just at hospital on Wed to find out if I needed chemo after breast cancer diagnosis, I do so awaiting the hospital getting updates from another hospital and then set date to start chemo. I have no idea how one will impact on other and my head spins some days. Has anyone had to deal with two separate diagnosis? Also if anyone can suggest anything to read to me feeling a bit upbeat would be appreciated

[shaun3Participant]

Hi Pb42,

So sorry to hear of your diagnosis, Myeloma is a little known cancer and there’s an awful lot to get your head around at the start. I only have to deal with myeloma so can’t help with any advice on dealing with another cancer at the same time. What I can say is tht I was diagnosed in Mar 18 and have been on chemo induction treatment since. I’m due for stem cell transplant in the next few months. I found tht initially I read everything I could find about Myeloma and a lot of it wasn’t very helpful – or even true. So overtime I’ve found tht the Myeloma UK and MacMillan websites are the best source of information. I would also say tht as you get your head around myeloma you’ll realise tht there have been huge leaps forwards in treatment which mean tht there are lots of options open to manage the disease. It’s important though to find a consultant tht is used to dealing with Myeloma. I’m very optimistic about the future, I’ve Continued to work throughout and I intend to be around long enough for myeloma to become a chronic disease.

Finally, I just want to send positive vibes and best wishes your way.

Shaun

[ale2104pParticipant]

Pb42,

First thing I would say is try as best as you can to stay positive.Emotional, psychological, mental strength is what you need at this time. Take it one day at a time and try not to read too many thing as I am certain you will find supporting and at teh same time contradictory information. If you want to read – read from this site.

I was recently diagnosed and still going through induction treatment and although I love to do reasearch I now only read things on a needs be basis. So for example – I have not read all the side effects of the medical regime which I am on – but when something comes along, then I will read up on it. a simple thing like itching – I only read about it when after about three days I itched like hell.

Yes! It’s quite normal to have MRI, CTCSAN, PETSCAN and XRay, each take images of a slightly different nature. Don’t worry about them too much

[pb42Participant]

Shaun, Thank you for reply. Hope your treatment is going ok and your up and coming stem cell transplant too.

I know what you mean about reading and agree on both websites you mention being the best to stick with.

Your reply much appreciated

[pb42Participant]

Solly,

Thank you for reply. I find it’s easier said than done to stay positive. When I was diagnosed with breast cancer last October I said ‘ok’ when they told me. For some strange reason I didn’t have a meltdown and didn’t keep me awake at night, well awaiting mri results to see if spread was a bit worrying, but this myeloma did knock me sideways. I feel better about knowing xray quite normal so thanks again for replying and hope all goes well with your medical regime

[sueblackParticipant]

Hi I was diagnosed with multiple Myeloma July 2017 started chemo , end of august 2017 oral and injection until Dec. February 2018 I had a stem cell transplant (my own cells). I had my ups and downs and still do, but I speak to a councilor, because life changes. I went back to my full time job in September, but felt really tired so reduced my days from 5 to 4 but Im doing fine. Like all newly diagnosed patients I was terrified and googled the wrong places. I spoke to my consultant who informed that according to the internet you died yesterday which is very true. He directed in the right place and I came across this site. Its a very daunting time and I was only 45 when diagnosed after an eye test.
I also attended the Myeloma open day and was so scared of what I was about hear, but found it very informative and I was happy hear that Im not on my last legs. Myeloma has the fastest growing breakthroughs for treatment. and we have out amazing consultants and nurses. I had all the scans MRI.PET.CT the lot, but all part of the journey. I wish u all good luck on your journey. I hope this gives you some reassurance.

• This reply was modified 5 years, 4 months ago by  sueblack.

[pb42Participant]

Susan,

Thank you for reply. I have to say a part of it made me laugh! Yeh, when first diagnosed and you start reading up and initially not knowing much else the internet can make it sound depressing. It’s good to know breakthroughs are happening. Your reply much appreciated and good to hear you back at work after treatment.

[davidainsdaleParticipant]

Hi All

Some positive news in the Times newspaper business section yesterday – not normally know for it’s sensenational tabloid headlines but, it describes the myeloma drug Revlimd ( made by Celgene ) as a blockbuster' and one of the most successful cancer drugs of recent years’.

Hope for us all then in this New Year of 2019!

Hope this helps
David

[paulapurpleParticipant]

Hiya,

Yes I have had to deal with two separate diagnosis. I initially went to the GP back at the end of 2016 because my right eye seemed to have moved forward more than my left. My GP got me seen at the hospital the next day, scans and a biopsy followed and I was given a diagnosis of Non Hodgkin’s Lymphoma. More scans and a bone marrow biopsy followed and through this it was discovered I had Myeloma as well; two diagnosis within a month. As the NHL was only in that one place they decided to treat the NHL first with a course of radiotherapy and monitor my Myeloma levels during this time to see if they were rising. Unfortunately my light chains rose over this time so as soon as I had finished the radiotherapy I started on chemo for the Myeloma.

Myeloma is different in all of us but in me especially so. I had VTD, (this is the one you describe) CTD and DT PACE (three lines of treatment), none of which worked for me. After genetic testing and an expert pathology report they found that I still had NHL in my blood and an NHL protein had attached itself to my Myeoma cells, Apparently I am the only one this has happened to. The NHL protein was blocking the treatment so I have since had some Lymphoma chemo which has managed to get my levels down, not as low as they would have liked but better than anything else. I am now waiting for a stem cell transplant which should be this month.

Good luck with it all. This site gives you all the info you need. I have also found the UK Myeloma Support group on Facebook very helpful and supportive. If you join it you will find an awful lot of very knowledgeable people on there who will happily share their experiences and you get almost instant replies.

Regards

Paula

[pb42Participant]

Hi Paula, Thank you for reply. Sorry to hear about two diagnosis in space of a month. I’m sure we both know one is enough! I hope all goes well with stem cell treatment. I jut wished all tests were out of the way and things would settle down but think as I’m due to start chemo very shortly think ‘normality’ a while off yet.

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