[pandaParticipant]

Dear lovely people,

I have just been diagnosed with stage 1 Myeloma and have yet to have the full picture – 4 days in. Still waiting for the genetic bloods to come back and now need follow ups on an MRI with CT scans on my spine and sternum where they have found lesions. The nurse didn’t want to say much to me and said I need to talk to the consultant about all my questions but I wondered if anyone on here had some useful information please?

I am a reasonably fit 61 yr old woman who lives alone. Son, wife and granddaughter toddler live nearby. I look after the granddaughter one day a week.

1.
The nurse told me I need to be very careful with seeing my GD as she attends nursery and therefore is a high risk germ vector as toddlers usually are. I have been double jabbed and so have my family but I now find out that it’s uncertain the vaccine is protecting those with Myeloma. I read on FB about people having antibody tests done to see if the vaccine has worked, the nurse told me they don’t recommend doing that. Does anyone have any experience of this and if so where would you get it done? I am now super scared of looking after GD – only 20 months old. We have a close bond and to stop being with her would just be really horrible. She is my life!

2.
I have two bone lesions that they are checking out. If it’s the Myeloma how do they treat them? Radiotherapy, bone strengthening meds, chemo?

It appears that this has gone undetected by my GP for the last 2 years as the consultant checked my bloods from then and found abnormal proteins from them. My stage 1 may become more than that I guess if the lesions are Myleoma? Not sure how the staging works.

My biggest worry at the moment is the Covid risk. I am very careful anyway but does this mean definitely avoid shops? I only go to places when not busy but of course more and more people are not wearing masks which freaks me out.

If I go to a cafe or eat out ( rarely) it’s only outside and away from others.

Should I stop seeing my GD for now?

Luckily I work remotely but am currently between jobs but at least not in close contact with people at work. My own business was wiped out by Covid and therefore money is also a concern.

Any advice , information gratefully appreciated. It’s day 4 of knowing I have this and still trying to process it and stay positive.

Thank you in advance.

• This topic was modified 3 years, 2 months ago by  panda.

[rosaryParticipant]

Dear Panda

Sorry to hear you have joined this group. The good news is that there are some excellent treatments for myeloma now and many more in the pipeline so every reason to approach the future with confidence and to live a very full and normal life including time with your GD

Everyone will tell you that Myeloma is a very individual disease and it can be very confusing to piece it all together especially at the start

A good consultant who is a myeloma specialist will be the key to getting you started on the right path. You have said you are reasonably fit and that’s very helpful and you will find lots of helpful tips on nutrition and keeping as fit as possible as you embark on your treatment

Let me try and help with your questions

1. The nurse is correctly saying because your immunity may be compromised then you should take extra precautions including with your GD. Hopefully others with GD can give you more specific advice. You should ask your consultant about being tested for the antiboides ( i was tested and the consultant confirmed i had the antibodies so it can be done and I’m not clear why your nurse said they don’t recommend that )

2. Bone lesions are very common with Myeloma ( I have 5). Treatment will depend upon their size and might include Radiotherapy. You should ask your consultant about your treatment plan and this normally includes some chemo and yes bone strengthener ( I personally had all 3, Radiotherapy, chemo and Zometa ( bone strengthener)

Staging is fairly complex and its good news that you are Stage 1. If you would like to learn more about how staging is calculated I recommend Healthree University which can be found on http://www.healthtree.com as a very good and easy to follow ) resource in addition to this platform.

Its natural to feel worried about everything at the moment and Covid doesn’t help , I think a lot of us have learnt to live with it, take sensible precautions but not let it rule our lives , including seeing our loved ones.

Over the coming weeks it will get clearer and we are all here to help answer any questions you might have from a fellow patient perspective.

Good luck with everything

[pandaParticipant]

Dear Rosary,

Thanks so much for your reply. It is hugely appreciated.

Oh that’s interesting that you have had an antibody test. Maybe it depends where you are in the UK and what hospital? The nurse said “we have had a lot of enquiries about this lately. We don’t do it as it’s not in the government guidelines and if you have no antibodies there’s nothing we can do about it!! ” Not really a very friendly or helpful response. I would like to know either way so that I can evaluate my risk.

I don’t have the full picture yet they are still waiting for the genetic FISH results? Plus now need follow up CT scans to check out the lesions. Those two things will dictate next steps. It maybe wait and watch? Consultant has been away so it was the nurse who called to give me the diagnosis.

Good luck to you and once again thanks so much for your reply.

I hope that you are doing well and treatment has gone well.

I’m finding it a bit bewildering being alone and dealing with this.

• This reply was modified 3 years, 2 months ago by  panda.
• This reply was modified 3 years, 2 months ago by  panda.

[paulapurpleParticipant]

Dear Panda,

Welcome to the group we never expected, or wanted to be a member of! I’m also 61 but was diagnosed four years ago. As has already been said there are lots of effective treatments for Myeloma these days; yes it’s not curable but it is treatable and there are lots of people out there who have lived for many years. It is tough when you are dealing with this alone. You are entitled to some counselling. If you feel this would help ask your team. Macmillan can be helpful too in some areas. My advice is to read up as much as you can from the Myeloma UK info as it really helps you to have informed discussions with your consultant. Have a look at the Infopack for newly diagnosed patients and Myeloma – An Introduction. You can download them just look under Publications on the site.

It’s good that they are doing a FISH test to determine if there are any genetics that will impact on your Myeloma; some areas don’t pay for this routinely. You don’t say what your blood results were so without knowing the levels of paraprotein it’s difficult to guess whether you will be on watch and wait or whether they will start treatment.

As regards the anti body test, it appears that some areas are doing them on request but others are refusing, presumably due to funding. I have an appointment in a couple of weeks and I will be asking but I doubt my area will do it.

Myeloma causes our neutrophils to drop which lowers our immune system making us very vulnerable to infection and more difficult for us to fight it. For example, my husband brought a cold home about a month ago, he and my son had just a cold and sore throat but I had a temperature of 39 and ended up on antibiotics for a chest infection. (We had Covid tests to check first of course).

Most hospitals don’t ‘stage’ myeloma as it’s a very individual disease and manifests differently in all of us. The staging doesn’t really help or mean anything. It’s possible that they told you it is stage one just to inform you that it’s in its early stages.

If you start on treatment it’s likely to be 6 months of chemo (Usually VTD) followed by a stem cell transplant. The booklets I have suggested will give you all the details; you may have been given these by your CNS of course, I was.

You say money is of concern. Talk to Macmillan and they will tell you what you may be entitled to. As you have been working until recently, you may be entitled to contributions based Employment Support Allowance; get your GP or consultant to sign you off sick if they haven’t already done so. Later on you might be able to claim PIP; I did this just before I went in for stem cell transplant and was glad I did as I was very incapacitated afterwards for quite some time.

Good luck with it all and stay positive. You may like to join the UK Myeloma Support Group Facebook page. It’s a very friendly group and there’s a wealth of knowledge and experience on there. I find it very helpful and supportive.

Paula

[pandaParticipant]

Dear Paula,
Thanks so much for your response. It’s really helpful.

I don’t actually know my blood levels yet until I talk to the consultant. The nurse gave me the diagnosis last week as the consultant was away and I had said I would like to know as soon as the results come in. I have a job interview on Weds for a flexible job working remotely so I am hoping I will get it but of course I have no real idea of what treatment means in terms of how rubbish you might feel and unable to work a bit further down the line!

The nurse implied I would be on watch and wait to start with but I think that depends on what they find with the lesions on the CT scan which I am now waiting for. there is sadly a lot of cancer in my family but as far as I know none with this before, not close relatives anyway.

Yes, I understand about the low immunity, that’s what is worrying more than anything at the moment with regards to Covid. I recently picked up a viral infection from my granddaughter which morphed into a chest infection 3 weeks down the line. It feels like it’s eventually going without antibiotics. Dr told me to keep a close eye on it.
Yes, my hospital are not keen to do antibody testing. I am wondering if there is a trusted private option as my son has said he would pay.

Sorry what is CNS? No I haven’t been given a booklet as they said they had run out!

Thanks so much for all of your information and the link. That is so helpful. Yes, a volunteer at Macmillan has sent me the email to get the financial advice. I will look into that and also join the Facebook page. Thanks for the heads up about treatment paths. What is VTD? I have yet to learn all the terminology associated with Myeloma. there’s a lot to get your head around.

I am so glad that you recovered from your chest infection and that you are doing well 4 years on. It’s very encouraging to hear about the effective treatments and the amazing people out there who are going strong after several years.

Thanks again for your time and advice. Much appreciated.

Very best
Panda

[lilibParticipant]

Hello Panda.
Thank you so much for starting this discussion. I have been thinking about registering to join this forum for a couple of weeks, but your query has made me do it. You already seem very organised and clear-thinking about your diagnosis. My husband was diagnosed very unexpectedly 5 weeks ago (has had a bad back for years) and started treatment more or less immediately. I was in a complete whirl- and so was he, naturally. I realised that I needed to ‘get a grip’ to deal with the 10 types of medication, but I did a spreadsheet, and we are more OK about it now.

You will be given the contact details of a Specialist Nurse, and ours has been very helpful – any minor worries and she is there during the week, or I can send an email, which she responds to very quickly.

I hope that you will get answers to all your questions on your next appointment. It’s probably good if you can take someone along with you (our hospital allows this – actively encourages it) for the first appointment as they can take notes for you or possibly remember things to ask.

I don’t know the answer about grandchildren. We don’t have any, but we are being very careful not to go to places with lots of children or adults – not just for avoiding Covid (both double-jabbed), but any other type of infection can be a problem when you are taking medication that suppresses the immune system. Even our adult children do not come and stay overnight unless they have previously taken a test and have avoided socialising.

Good wishes to you for keeping well and active.

[pandaParticipant]

Dear Lilib,

I am glad that my post has encouraged you to join this forum and I am really sorry to hear about your husband. I really hope his treatment goes well and his journey is a good one.

I’m not sure how organised I am ha,ha, my kids generally think of me as quite disorganised but I have decided to take the bull by the horns and face it full on. Gosh 10 types of medication, that’s a lot. I have just had a rough read through the online hand book for newly diagnosed people on here, have you seen that? It’s incredibly helpful but also I have just found it slightly terrifying with the prospect of facing any treatments alone and feeling like rubbish! I hope your husband is not having too many side effects.

It’s been a tricky time as my daughter only in her early twenties has just been diagnosed with Crohn’s after 5 months and a nightmare journey. I have no idea how to tell her about my Myeloma. My son is older and he knows and I have tried to reassure him that all will be well and there are great treatments out there.

How did you tell your kids?

My daughter is already immunocompromised ( double Jabbed as are all my family fortunately ) but terrified of Covid so now I am in a similar situation to her. I have been taking regular Covid tests due t my granddaughter.

Yes my son, his partner and daughter are my greatest risk! Questions to ask my consultant tomorrow about should I avoid being with them for the moment which will make me incredibly sad indeed. They cannot keep GD out of nursery as they both work full time. That’s the worst thing for me right now the prospect of not being able to spend time with them.

I wish your husband and your family a good journey.

Thanks so much for responding.

[mulberryParticipant]

Hi Panda

I agree with the good advice given by Rosary and Paula.

CNS is clinical nurse specialist, the person who you have already seen.

Myeloma UK has lots of award winning booklets and information that you can either read from this website or ring to ask them to send copies to you. The organisation really is very helpful for us patients.

I too have been refused antibody testing. My consultant is usually very obliging when it comes to testing, but says that almost all myeloma patients do have some antibodies. Almost none of us have as many as normal low levels. The problem is that the evidence isn’t available yet about what absolute level confers protection, knowing the level of antibodies at this stage is therefore likely to be meaningless and could make us over confident. His view is that the only safe thing to do is to act with extreme caution until current research is published.

It is common, but not inevitable, that myeloma patients have frequent infections. Given that you have had one recently it may be better to err on the side of caution with your GD if your dear little GD spends time in a nursery or similar environment.

If you have been diagnosed at a small, local hospital it is worth considering asking for a second opinion from a larger regional hospital. This is because myeloma is a rare disease and is complex (hence ‘multiple’). It is a fast moving field (fortunately for us) and patients can benefit from seeing drs or consultants who see a lot of us! Second opinions can be obtained to a hospital of your choice, or even a consultant of your choice, on NHS, just ask your GP. I have been very thankful that I did this.

The standard guidelines for starting treatment are if any one of the following are present, 60% or more bone marrow infiltration, high calcium in the blood, kidney damage, anaemia or bone lesions. As you have bone lesions this would suggest treatment is likely to be advised. It is always better to be diagnosed at stage 1 rather than later as less damage has been done to organs, bone marrow and of course bones.
Some people manage to continue to work through their induction treatment, others find it pretty gruelling and may need sick leave (or even early retirement) But as Paula has said, many of us eventually get back to a level of health we really hadn’t hoped would be possible.

Good luck with your job interviee & best wishes

[lilibParticipant]

Telling the kids – and telling friends in general – yes, that’s a good question. Someone should write a book on it.
My older son is training in the medical profession, and has been absolutely wonderful in supporting me, and finding this website for me. I knew he would be fine and positive about the whole thing. My younger child, though, is tending towards the ostrich approach. I can understand that. I’ve offered to answer any questions, but got a straight ‘no’.

Then there are the relatives who want to make it all about them… So for the past 5 weeks I have been very selective about to whom and what I say. It is a minefield all of its own.

It has taken me about 4 weeks to process it myself, and be more comfortable talking about things with others. So I would say don’t rush yourself. I doubt if anyone will mind if you haven’t told them straight away. And if they do – well that’s their problem, not yours.

[pandaParticipant]

Dear Lilib,
Thanks for your reply.

Yes it’s quite hard telling people plus it’s only just starting to sink in with me. Had a bit of a low point yesterday.

Take very good care.
Very best
Panda

[pandaParticipant]

Dear Mulberry,
Thanks for your message, that was really helpful.

I am with a city hospital and the consultant has been working with Myeloma for some time so that’s reassuring. Never hurts to get a second opinion though I guess. I have faith in him but not in the hospital which doesn’t have a great reputation and I recently had some bad experiences there with a family member.

I wonder where the most experienced consultants are?

Thanks for all your advice.

Best wishes
Panda

[mulberryParticipant]

Lilib and Panda
All of us patients and spouses & offspring absolutely know how the diagnosis shakes to the core, and is totally preoccupying for some time. However it will not always be the first and last thing you think about and it will cease to be so fear inspiring. For the majority of us myeloma is more like a long steeplechase, bits of drama and difficulty followed by relatively good health,or sometimes really good health. When I was diagnosed I really thought that I was on a one way journey where I’d never feel as well as I did at the start. I was very wrong, 3 years in I feel absolutely fine 99% of the time, no one would realise anything is wrong.

If you feel that you have a rapport with your Dr, and he or she knows about myeloma, I would stay put! This disease is a long haul so relationships are much more significant with our drs so a potentially good one is valuable. Although long journeys to a specific hospital can work, they are difficult if you are feeling rough during treatment, even though the current video calls avoid us having long clinic waits & long days travelling during treatment.

[lilibParticipant]

Hi Panda,
Sorry to hear that you had a low point yesterday. I hope that you were able to give yourself a treat or something to make the time pass. It happens a lot, so I suppose that one needs to have a distracting strategy to get you through those worried times.

I hope that the interview goes well for you on Wednesday. My husband and I both retired early, but I still do some occasional work. I haven’t taken any on since his diagnosis because I wasn’t sure how well he would manage on his own for a day. I’ll do half-days to begin with. Sounds like the role you are applying for is pretty flexible, so that’s good.

Is your GD old enough to chat with you on Zoom? If you have to isolate from her, perhaps that will be a (poor) substitute for keeping in touch with her, and she may like speaking to her grandmother ‘on the television’. Some small children seem to take to it like the proverbial ducks.

All the best for a good and positive week!

Lili

[lilibParticipant]

Hi Mulberry,

Many thanks for your positive post, and for giving lots of hope to many people looking in on this forum. So good to hear that you are doing so well.

We are not having a good day here, but thanks to you I believe that this, too, will pass.

Lili

[sachbarnesParticipant]

Hi all, on the topic of Antibody Testing, I read on the Blood Cancer UK forum that the one that is usually given is the Roche one. It has all the approvals and gives you an exact reading instead of just negative/positive. You can get it privately from Lloyds Pharmacy online for £50, after filling out a few questions where a GP then reviews and approves. They can send a copy to your GP for your records as well. Link Here

I asked the Myeloma UK specialist team, and they said as some have mentioned, we don’t know what constitutes a good level, and also B and T cells form part of the protection and those are not measurable. But they said antibody testing can be useful, even if it only paints a partial picture. Also the various trial data that has been coming out shows range levels, and we know the level the NHS seeks for plasma donations, so we have some data as comparable.
I have pasted Dads results below which includes some info on what the number means. Thankfully his seems to be close to their median. Personally I would prefer to know he has some there anyway, even if we dont yet know what a good level is.

Your COVID-19 antibody blood result was Positive. This means that IgG and IgM antibodies to a specific protein of the SARS-CoV-2 virus were detected in your sample.
Your total antibody level was 155.0(U/mL).
At the moment we do not know what constitutes a high, low or average level of antibodies in the population. However, as a guide, NHS Blood and Transplant are targeting people who have antibody levels higher than 62 U/ml to donate plasma to help in the treatment of people who are ill with coronavirus. This doesn’t mean that if you have lower levels than this you won’t be protected against coronavirus. However we don’t know at what level of antibodies protection occurs. This test enables you to track your levels of antibodies over time, to see how quickly they decline after a positive coronavirus test or receiving the vaccine.
Among the 357 with detectable antibody after dose 2, median (IQR) antibody levels were 142.1 U/mL (9.44->250) (Roche)

• This reply was modified 3 years, 2 months ago by  sachbarnes.
• This reply was modified 3 years, 2 months ago by  sachbarnes.

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