[ksee86Participant]

So after 8months of tests & false diagnosis we’ve finally been told my husband (42) has Myeloma, this was the first original diagnosis before we were told it was solitary plasmacytoma then possibly lymphoma.

But im confused as I feel we are being ‘fobbed off’- it started with being told he had 3 spinal lesions, bloods were clear, bone marrow also clear, biopsy on tumour showed abnormalities-

i questioned the bloods having read up on myeloma and he then chose to tell us they showed a very slight m-spike but nothing to worry about. Nothing else.

I questioned bone marrow biopsy, it’s clear.

husband was sent for radiation only to be told they couldn’t treat him as he has more than 6 plasma tumours-   Went back to haematologist who said its because the hotspot in his lymph nodes had grown! We weren’t even told about hotspots in his lymph nodes?!

Had lymph nodes removed and outcome was its not usually the way myeloma progresses but it’s myeloma. Told to take leave from work and they will treat him with high dose of chemotherapy.

He refused to answer my question of how advanced it is or anything.

I know all myeloma patients are different but I assumed it was all down to bone marrow?

Where do we go from here, he’s been given no support, no information, no definite answers to our many questions- just a diagnosis, a treatment option and sent home.

what do we need to ask? Need to know?

[finnParticipant]

Hi

Sorry you have had so many problems with the diagnosis. Sometimes myeloma is so different from others and shows no other symptoms than bone lesions.  I have read about cases like your husband’s: non-secretary (no M-spike) and clear bone marrow biopsy, and the progression of the disease has to be followed by imaging only. Hope your consultant explains more about it on your next visit. If not, how about changing the consultant? Best of luck

[graham-cParticipant]

I would recommend that you make a Subject Access Request for all medical documents. reports, tests and scans produced by the hospital department in respect of your husband’s treatment. It’s a simple procedure and the hospital  website will detail how you go about it.

The maximum cost they can charge is £50 and they are legally obliged to fulfil your request. You will then know what they know. It may take a month or two and, if they should be foolish enough not to comply, I can let you know how to make them very sorry.

When I had kidney cancer the Consultant was nothing short of rude to me the first time I saw him and, immediately prior to him operating, he was rude to my face again. He also blocked me from seeing a cancer nurse. It’s not helpful to anyone for a Consultant/doctor to treat you in an offhand fashion as it affects your husband’s life and the wellbeing of your whole family.

I don’t think any doctor/Consultant would like you to make an SAR but, if they won’t give you the information to which you are entitled, there is no option. I make them quite regularly now as my hospital has been poor at providing details of tests.

The principle is that you are legally entitled to know whatever the doctor/Consultant knows about your illness but, if he won’t treat you like an adult, I don’t see any reason why he/she should be treated like an adult, that’s why I am happy to go behind his back.

It’s very strange that when a nurse takes your BP in hospital he/she will try to avoid the patient seeing but actually it is YOUR information, not hers.

Making a Subject Access Request also avoids you coming into direct conflict with the Consultant and having to harass him. Until I made my SAR I knew nothing about my cancer.

[georgieporgieParticipant]

Hi,

I complete relate to your story!

My father was taken to hospital with a shadow on his lung we were told the high chance was he had lung cancer 1 month later we were told it was myeloma he has no other symptoms apart from the a broken rib which is his only lesion with a pin prick on his hip.

I was so confused how they came to this diagnosis, we two felt rushed around and no one seemed to want to help so we went and got a second opinion this guy thought it could be plasmacytoma which makes it more complicated.

We are now told that the above is just a different type of myeloma and he is currently undergoing treatment which is due to change next week as it is not working. I think this is because the second guy was correct.

Myeloma and the diagnosis is so confusing and must be hard for them to make sure the get it exactly right.

If your uncomfortable you can ask for a second opinion most consultants encourage this anyway.

Alternatively we got in contact with our macmillian nurse and she was fantastic they make you feel a lot better and clearer about things.

I know how your feeling I felt the same but I have a much clearer mind now after picking up the phone and going to another consultant.

 

 

[greetjeParticipant]

Hello ksee86, I only find your message now as I was looking for more information about myeloma showing up in the lymph nodes!

I have a similar story. I have had smoldering MM for 14 years but recently, a lot of lymph nodes started to swell. Some lymph nodes were removed for biopsy and the result showed that there were a lot of myeloma plasma cells and amyloidosis in the lymph nodes. I am still waiting for furter tests before we decide on a treatment plan. My doctor also confirms it is extremely rare to see this presentation of MM!

How is your husband doing in the meantime? Has he been treated with chemotherapy? I would love to hear from you.

I wish your husband and yourself all the best!

Greetje

• This reply was modified 8 years, 9 months ago by  greetje.

[beetlejuice54321Participant]

Hi

I just want to say that I was diagnosed with myeloma in my lymph nodes almost 3 years ago, alongside a tiny amount in my bone marrow (less than 10%). I was treated (and am still treated) at the royal marsden in Sutton. When I met professor Morgan he said that the presentation of myeloma in lymph nodes is very rare. However, when combined with very little myeloma in the bone marrow it is curable (or at the very least, you will have a long remission if things go well). I was 33 at the time so hearing that cheered me up a lot.

 

i was treated as a conventional patient would be, so had two cycles of DT-PACE followed by high dose stem cell transplant. That took out 90% of the tumour (it was in about a dozen lymph nodes and formed quite a large mass over my chest). I then started weekly VDT (velcade dexamethosone thalidomide) treatment and have been on it ever since (now onto cycle 18). I got to remission after 18 months treatment and a bout of radiotherapy on all the affected lymph nodes that finaly pushed me into remission. I remain on velcade and Dex as maintenance and apart from some sleep deprivation caused by Dex and the associated fatigue a couple of days later I’m generally feeling fine and work full time (almost)!

I hope your treatment goes well for you and I wish you the very best of luck.

 

Take care

doug.

[georgieporgieParticipant]

Hi Doug,

Thank you for sharing your story.

My father 52 has just had 2 cycles of DT-Pace and is now ready for his stem cell transplant he is also being treat at the Marsden Sutton by Dr Boyd and Dr Kaiser. How long after your stem cell did you then have to start VDT?

Many Thanks.

 

[beetlejuice54321Participant]

Hi georgieporgie

 

i think i was started on the VTD treatment between 4 and 8 weeks after the stem cell transplant. I can’t remember exactly when the treatment started. It was probably closer to 8 weeks than 4 weeks in hindsight as I had to have a PET scan to see the effect of the melphalan on the lymph nodes prior to the treatment starting. I started on the VTD treatment back in November 2013 and have been on it ever since. But as I said, I’m feeling good, back at work, even got married (after I got to remission) and am starting to think long term about things. So be positive and I hope things go well for your dad.

Take care

doug.

 

 

 

 

 

 

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