Very worried now.

[Gooner1947]

Saw the Haematologist today. It's definitely Myeloma and is Malignant.

What now needs to he established is whether it's symptomatic or asymptomatic.

All getting a bit confusing for me now to fully understand.

The Haematologist was concerned about low calcium. More blood taken. Also another full skeletal CT scan is required.

I was hoping she had already communicated with Cardiac Surgeon doing the TAVI. Doesn't appear so.

However, I do have an appointment with him on 3rd March in Cardiff.

From what Haematologist told me the Surgeon will need to know whether symptomatic or not in terms of making a decision etc how to proceed.

I have been given a Myeloma Clinical Nurse Specialist that I can feel free to contact etc.

She gave me a booklet to read for information about Myeloma.

Anyway that the state of play. There was so much information to take in.

[Whiteghost]

Hi I'm so sorry to hear about your diagnosis. My husband has Multiple Myeloma, and I understand your frustration in that you want everything to start like yesterday. It does feel like a minefield, and of course on top of this you have other health problems. From experience you will get there, just hold in tight there, let the professionals sort it out, I'm sure they will. Just look after yourself. 🤗💝

[Gooner1947 in reply to Whiteghost]

Thank you. This has been ongoing for about 6 months plus. But I do take your point.Did your husband have a TAVI as well?

[Whiteghost in reply to Gooner1947]

No but he is under a cardiologist, he is having heart issues, going through tests at the moment. 🤗

[Gooner1947 in reply to Whiteghost]

I wish him well. All the very best.

[Whiteghost in reply to Gooner1947]

Thank you. You take care of yourself.🤗

[10gingercats]

Of course I do not know your exact medical details.However my brother was diagnosed 20 years ago in his early 70's with multiple myleoma and survived well for another 15 years .Then he died of Covid . He was prescribed thalidamide and chemo. for a while .I hope this may encourage you with your situation.

[Gooner1947 in reply to 10gingercats]

The worry for me is that both treatment fir Myeloma AND the TAVI now seem urgent. I'm getting very breathless and feel a though I need the new heart valve to help give me more strength to handle the treatment for Myeloma

[10gingercats in reply to Gooner1947]

My brothers multiple Myloma was extensive ....in chest,forehead hips and spine .The docs decided not to remove the spinal tumour .He even got through bladder cancer whith a 5 year 'promise ' of survival and he made it.....quite awful that the b.....Covid got him in the end. he was in pretty good nick otherwise at nearly 90 and not much got the better of him.

[LadyZ13 in reply to 10gingercats]

I came to this thread as I too am more familiar with myeloma than I would like to be - lost my mum to it 6 years ago. I remember your support as a fellow ASD person, and to find we have this other connection spurred me to comment.

This year, I'm supporting a direct report whose father is going through the same journey - it's been hard stirring up all the memories of mum's treatment but I'm glad I understand the disease better than most. I will share with her that your brother survived well for 15 years, that will give her a lot of hope.

As to the OP, my mother's treatment was mostly medical and non invasive and her quality of life was decent - she was at my wedding 6 months into treatment and no one knew she wasn't 100% well. The heart situation must be a worry but there's no reason to assume you couldn't pursue both treatments in close succession. Wishing you all the best.

[Gooner1947 in reply to LadyZ13]

Thank you. Appreciated

[SandraLlew]

Hi

This is a lot to deal with, lean on the Myeloma nurse, my cancer nurse was invaluable in giving me information as well as co-ordinating all the different departments to try to speed things up. On this forum there is a cancer advice site as well might be worth talking to them. I hope all goes well.

[Jaybbb]

Hope the best for you. I have MGUS and am tested regularly as it progresses. Hoping that Myeloma is not in the near future for me.

[Murderfan58]

The good news I can pass on to you is the treatment for malignant melanoma has come on since 2001 from when my husband had grade 4 malignant melanoma. If he had it today his life could have been extended and better quality of life . I am not saying this to frightened you any more than you already are but to try and give you hope .

When I read last year that treatment is available for grade 4 malignant melanoma I was happy may sound strange but I would hate anyone to go through what my husband did . But medical science has evolved so much in so many fields since my husband died in 2004 . In fact it will be 21 years on the 6th. But we where lucky we had the results within 2 weeks and the melanoma removed and skin graft don't 2 weeks after that . We where given 5 years for him to live he lived 3 . He was 47.

I know how frightening it is not just for you but all those that love you . But don't give up hope there is treatment and you don't know what grade it is yet . Until you know the grade then you don't know what treatment you will need after it's removed . Just make sure you wear factor 50 suncream even in the winter months and make sure the least amount of skin is exposed to the sun .

Please everyone check your bodies and make note of any moles or odd marks and do it monthly . Any skin changes get them checked out .

[aardvark68 in reply to Murderfan58]

Sorry to hear about your husband. And I agree that treatments for various cancers have improved significantly.

But to avoid any confusion, I wanted to point out that melanoma which your husband had is a skin cancer .

Myeloma, which my mother had, is a blood cancer.

Just so Gooner1947 doesn’t get more confused reading your post about skin grafts and sun cream- neither of which are relevant here.

[Gooner1947 in reply to aardvark68]

Thank you for that clarification

[Murderfan58 in reply to aardvark68]

Sorry didn't realise it was different just thought it was a different spelling. Thank you very much for telling me . I do hate getting things wrong. I didn't realise there where different types of blood cancers . But then again until my husband had chemo thought it was just one sort. Not different ones for different cancers and different grades .

Until something happens in your life we for one where ignorant about aspects of cancer and all it's associated problems .

My mom had breast cancer twice with a 13 year gap between the mastectomies and how much the treatment had changed .

[scentedgardener]

So sorry to learn of your diagnosis.Have you been in touch with Myeloma UK? They are very helpful, informative and can give you loads of information.

You can ring them on 0800 980 3332.

[cappachina]

I am so sorry to hear of this but they will find the best way forward to treat you Hopefully the heart surgeon will be more helpful with info .

[Gooner1947 in reply to cappachina]

I really hope so. My breathlessness is getting much worse. I just hope they can sort the new heart valve out first and then, hopefully, I will have more strength to handle whatever the Myeloma is going to throw at me.That's how I see it.

[SandraLlew in reply to Gooner1947]

That is what happened to me, the heart surgery was slated for 2 years time but then I got lung cancer and that precipitated early heart surgery followed by cancer treatment. There was not much of a gap in treatments, initially the heart was done on 21st August and they were going to do lung surgery 2 weeks later. I went for radiotherapy instead and that was done in October (gap was for calculating dose and teaching the machine the specific settings for my body.) I hope it goes well.

[Gooner1947 in reply to SandraLlew]

I have to have a full skeletal CTscan tomorrow. Finding out extent of Myeloma.I then have appointment with Haematologist on 28th February and then appointment with surgeon doing my TAVI on 3rd March.

I am hoping and praying they do the TAVI asap. I am finding it all very difficult with my breathlessness and it's affecting my wife too. She had a panic attack the other week and it really frightened me.

[SandraLlew in reply to Gooner1947]

From the outside of this situation it looks like the doctors are planning but perhaps not informing you as well as they could. Full body scan to determine the extent of the myeloma - this means they will have the full and up to date information on which to base decisions. These scans can take ages to be reviewed and information passed on. I have no doubt that the haematology team will be having a Multi Disciplinary meeting with the cardiac team to decide a way/s forward for you. The gap between Haematology appointment and Cardiac appointment is very small, those two appointments will likely be the ones when you get details of the planning for your treatment.

The waiting is the hardest part, lean on the nurses for support for you and your wife - it's their job, ask them for resources you can use - leaflets, links to websites, support organisations and so on.

I hope it all goes smoothly for you.

[Gooner1947 in reply to SandraLlew]

Thank you. I should have had bone marrow biopsy in November. Was cancelled twice.I had a full aorta scan back in September (I think). They wouldn't let me have another one till a certain amount of time had passed.

The myeloma clinical nurse is on leave till Thursday.

In the meantime I will prepare an email with questions.

I do doubt whether the multi discipline team have met. But they might surprise me.

Thank you for all your advice.

[SandraLlew in reply to Gooner1947]

I found that consultants secretaries were very helpful and useful - they can't give you clinical details but will know about MDT's and that sort of stuff.

[Thanksnhs]

Hi I am so sorry to hear of your cancer diagnosis, I no how scary that is, in December 23 I got diagnosed with bowel cancer and since I had a heart transplant in 2020 the consultant's and surgeons were extremely worried about a general anesthetic and the length of time the surgery would take. The operation took place nearly a year ago on the 4th of Feb my cardiac consultant was on standby, it took 6 hours the operation was successful they removed half the bowel and the tumor with it. The care I had was amazing and they all worked together to make sure I got through it ok, my surgeon just calls me miss complicated, in a nice way. I wish you all the best for your future treatment, let us know how everything goes, I will be thinking about you , take care char x

[Gooner1947 in reply to Thanksnhs]

Thank you.My problem is having two serious conditions on the go at same time and both need addressing sooner than later.

Two different departments in two different hospitals with two different consultants.

My breathlessness is now much worse.

I would just like to get my new heart valve implant asap to get more strength and then I can try and tackle the Myeloma.

That's how I see things

[Thanksnhs]

I really hope that you hear from your consultant soon. I live in Scotland and I also had two different hospitals a heart specialist one and the General for my cancer treatment, thankfully they both worked together to get everything organised and I really hope that your hospital/consultants can do the same. Char

[Gooner1947 in reply to Thanksnhs]

Yes I hope they do as I expect they will. I do have an appointment with Cardiac Surgeon on 3rd March.

At least I now have the Myeloma Clinical Nurse available to contact. Met her yesterday when we saw the Haematologist.

[Murderfan58]

I need to apologise to you I didn't realise you have a blood cancer . I just thought it was a different spelling . Please ignore what I said . Thankfully it's been pointed out to me my mistake . You must have thought I was round the bend .

Note to self read things properly and if I don't know the word look it up . 🤦

[SandraLlew in reply to Murderfan58]

You were trying to help someone in distress, everyone makes mistakes. x

[nilmonisikdar40]

Hi there , I know it is a serous condition and needs very specialised mangagemnt from the haematologoist. However treatment and prognosis/outcome has drastically improved and improving all the time. That should be reassuring as you may have received lots of information but the important thing is to choose and retain the correction information because your case is unique. The cardiac specialist and haematologist will have to work in tandem because certain chemotherapy may affect your heart. What is the present serum calcium level because that is associated with myeloma/bone marrow cancer and has it affected your kidney function. You are a courageous person but in the end you will be fully cured. I would like to hear from you in due course. Regards.

[Gooner1947 in reply to nilmonisikdar40]

Thanks for your encouragement. Much appreciated. It's just that I have received so much info at appointment with Haematologist yesterday that my mind is quite scrambled with so much information that's difficult to understand.

[SandraLlew in reply to Gooner1947]

This is what the nurse is for, to support you to explain it all, to point you to resources and support groups. Tae advantage of them all.

[cateblanchett]

Hello,

Don’t panic. You can take your time to digest what you’ve been told.

I was diagnosed with MM about 2 years ago. Since then I’ve been researching this complex disease. So far my haematologist has not thought that it was time to start treatment. This is why various tests must be taken every few months to determine the progression of the disease, to know when to treat. My haematologist is very positive about what is possible now to combat MM. The outlook is good.

One of my symptoms is anaemia. This can cause breathlessness with effort. I had a blood transfusion in the past which made a big difference to my energy levels and breathing. This shows what is possible in the interim.

I am interested in your progress and send you all my best wishes.

[Gooner1947 in reply to cateblanchett]

Thank you. It's just that it seems to depend on what both the Haematologist AND Cardiac Surgeon doing TAVI decide on how to proceed.I seem to be back into the unknown again.

I just hope they see the urgency in all this. My breathlessness is much much worse now. A month now seems an age to me now.

[cateblanchett in reply to Gooner1947]

I don’t now if it will make you feel calmer but perhaps you can concentrate on what you want to ask the cardiologist. I find this makes me feel more in control. Consider it advocating for yourself. You will be prepared for your meeting and hopefully able to get your questions answered.

[cateblanchett in reply to cateblanchett]

Forgot to say if you are concerned with your worsening breathing maybe you can contact your nurse or emergency services. At least you will know if it is serious and needs to be treated. Cheers!

[Gooner1947 in reply to cateblanchett]

If I was seeing him in a few days yes. But it's another month.When I saw the main cardiologist 3 weeks ago he told me that he needs to Haematologist AND cardiac surgeon doing the TAVI to get together to discuss way forward.

When I saw Haematologist last Friday it was obvious it hasn't happened.

I should've had the bone marrow biopsy last late November but was cancelled TWICE.

[Old_bee]

I’m sorry to hear this. I just want to wish you all the best going forward under the care of the experts

[Gooner1947 in reply to Old_bee]

Thank you

[PinkKizzie]

Hi Gooner1947, really sorry to read your post on your recent diagnosis. Wishing you well going forward. Take care.

[Gooner1947 in reply to PinkKizzie]

Thank you