[worrieddaughterParticipant]

Hi there,

I had a call today to say my day (79) has been diagnosed with Myeloma, I’ve been in bits all day but decided to get my research done on what we are now dealing with and found you! My Dad has his biopsy next Tuesday, they’ve talked about steroids, he also has been diagnosed as anaemic and will need an operation in his lower back as all this started with a fractured vertebra 8 months ago! (don’t get me started on the poor doctors response).

At this early stage does anyone have any advice, words or wisdom or things we should be pushing for. Thank you in advance x

 

[debbiegParticipant]

Thank you for posting on the discussion forum. I’m sorry no one has yet replied to your post – I’m sure they will in due course; meanwhile I thought it would be useful for me to reply – my name is Debbie and I am one of the Myeloma Information Specialists here at Myeloma UK.

As you found this discussion forum I am hoping that you have also seen on our website that we have a number of resources here at Myeloma UK to endeavour to provide information and support to you and your dad. In addition to a number of downloadable publications on the website we are also very happy to send you out hardcopy publications if that would be helpful – we appreciate that publications such as our Infopack for newly diagnosed myeloma patients can be quite bulky to read online, and are also useful to have to refer back to. You can find a list of our publications here:

Myeloma UK Publications list

In addition to written publications we also have a number of videos and animations that you and dad may find helpful. The link to these is here:

Myeloma TV

From your description it sounds as if your dad is still having the necessary tests to confirm and provide additional information on his diagnosis. Unfortunately myeloma is a complex cancer and can be difficult to diagnose. It is not uncommon for patients and families to describe delays in getting diagnosed, and I am sorry to read that this has been your experience.

If you would like to talk through your dad’s situation please do consider giving us a call on the Infoline service that we offer. The Infoline operates from 9am-5pm Monday to Friday, and Ellen, Jude or myself will be happy to talk things through with you if you feel that would be helpful. The number is 0800 980 3332.

With best wishes

Debbie Gardiner

[greeners12Participant]

Hi

i know exactly how you feel at this news on your dad, my husband was diagnosed two years ago, he had 5 fractures to his vertebrae he did have some procedure to help this but still gets pain from these, all I can say is be guided by his medical team, my husband had 10 months of chemotherapy. Followed by a stem cell transplant, he has monthly bone infusions and has been in remission for the last 6 months.

all you can do is ask questions when you meet with the medical team, there are always nurse

specialists who work within the hospital as well.

it takes a while to get your head around it all but take each day at a time.

initially it is very scary but once you have more information from the doctors I am  sure they

 

will decide on the best treatment options for him

 

 

 

 

 

[christaylorParticipant]

Hello, I didn’t reply at first because being a little under the weather due to Chemo, but I would just like to say a little late, yes it must very daunting when someone you love is given this type of news so I do really feel for you and your family. Just a little about me first, I was diagnosed with MM in 2014 having severe bone damage, so much so was reduce to a wheelchair and in a complete mess. I had my spine fixed pretty well with keyhole surgery, and my right femur have had a metal rod inserted. I had a stem cell transplant and was remission for about 18 months. It’s now active again hence why I am back on chemo.

For you and you Dad, MM is treatable there are quite a few different types of drugs that do well in knocking it back. Yes to be frank some of which give not so nice side effects, but they do reduce the bone damage pain. It is a very difficult subject especially with all the complicated names, but try to do your research on this web site or Myeloma Beacon in the USA. They both give excellent info, I would expect your Dads consultant with decide the best way forward, and once it’s knocked back maybe he can have like me the keyhole surgery on his spine. I wish you and your Dad all the best. CT.

[jollyjoshParticipant]

Hello, i am writing on behalf of my wife who was diagnosed in sep last year. She had four breaks in her back, pelvis and sternum breaks also.

What i would advise is take the information in slowly or you may feel bombarded, if you are able to attend clinic appointments with your dad then do so. In our experience the whole set up of the medical team are very receptive to any questions you may have.

Being very organised is key, add all info and appointments onto a calendar then nothing is missed. be prepared with all your questions in a book and take notes on the answers given. The specialist nurses are excellent for all your concerns/questions.

Another good piece of advice is be careful of GOOGLE, some of the information is not that positive, use sites like this one and macmillan for clear concise information.

On a positive note my wife is now on cycle four of her chemo and doing well, she has one injection per week of velcade with little or no side effects. The next step is stem cell treatment for her, a little worrying but a means to an end.

The info and downloads from this site are excellent, also the macmillan booklets are really good reading.

Hope this helps you and your family, take care and good luck.

[worrieddaughterParticipant]

Hi all,

 

I would like to thank you for your responses, we have been dealing with the diagnosis as a family and I have found real comfort in your comments and all the information on this site. Without it there is no way I would have done the level of self containing I have done and to remain strong for my Dad and family. I feel although nobody wants to hear the words ‘your dad has cancer’ it is what it is and my dad is receiving a course of combined treatment of steroids, valcade and can’t remember the other. He has had a full body scan and is on a waiting list for the 2 vertebrae to be repaired. We remain hopeful and as positive as we can be. I have no doubts I will be back on the forum for support as we continue on this journey, but once again thank you for sharing and providing me and my family with the strength to fight!

[pippylongstockingParticipant]

Hello

I don’t have any advice to offer as this is all quite new to me. I’ve just found the forum and I just wanted to say hello. My dad is also 79 and has recently been diagnosed with Myeloma, he also has 2 damaged vertebrae. He is 4 weeks into his chemo and seems generally much better than he was 4 weeks ago. Sadly he still has a lot of back and hip pain though. I have found the replies on this post very helpful. I too think that I will become a regular visitor to the forum during our journey.

Much love to everyone.

 

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