New here? Feel free to introduce yourself in this thread 👋

[Spangleystar]

It’s interesting as I guess I’d had Monoclonal gammopathy of undetermined significance ('MGUS') for many years as it was often shown in bloods since my late 30’s that I was ‘a touch anaemic’ and prescribed iron without any further investigation- because my Nan was anaemic it didn’t occur to me that it could be anything more. I’d never heard of myeloma until I was told I had it!

Bortezomib/Velcade is absolutely fine, a quick injection bit of a sore tummy but nothing to worry about. Dexamethasone is a wild beast though! Make sure you take it as early in the day as possible, I would take it at 5am and still have problems sleeping for a couple of nights. As much as I hate the Dex it is excellent at its job. Because I was in a lot of pain and had very high light chains - they gave me a dex spike ahead of induction, 4 days at 20mg a day, a week later my light chains had gone down from 1200 to 600, so it pays to stick with it, that said I am highly sensitive to Dex and my induction dose was halved to 20mg a week, so if you do struggle on it you can ask them about reducing it slightly.

Good luck with everything- there’s a few of us with myeloma regularly on here, so do reach out whenever xx

[Duncan]

Hello there @Angelic13, welcome to the forum at this worrying time. Apologies for the belated greeting but you have found just the right place. I’m really sorry to read of your son’s diagnosis and need for hospital treatment.

First I’ll share the great Blood Cancer UK information about Acute myeloid leukaemia ('AML') for your reference: Acute myeloid leukaemia (AML) - what it is, symptoms, tests, treatment, prognosis and support. | Blood Cancer UK and from Macmillan too: Acute myeloid leukaemia (AML) | Macmillan Cancer Support

Thinking of support for you, I wonder if you have a Maggie’s nearby? I’ve heard lots of great things about their centres, including that you can simply drop in: https://www.maggies.org

You are always welcome to call the lovely Blood Cancer UK nurses for support, ideas about further resources, and to talk through any medical aspects of caring for your son. Their free number is 0808 2080 888.

Here’s a forum thread with a parent of someone diagnosed with Acute myeloid leukaemia ('AML') which may be of interest: Daughter recently diagnosed with AML

If you’d like to look further around the forum for specific topics then just use the search box at the top. If you’d like to reach out to other forum members add an @ before their username in a post and they’ll get a notification.

Hope that helps a little @Angelic13, do please keep us posted about how you and your son get on.

[Duncan]

Hello there @LouiseB, welcome to the forum. Apologies for the belated greeting. I’m so sorry to read that you’ve been living with a smouldering myeloma diagnosis, and especially sorry that it’s progressing. I’m glad you found us here.

I’ll share the Blood Cancer UK information about myeloma for your reference: Myeloma | Blood Cancer UK and from Macmillan: What is myeloma? (Multiple myeloma) | Macmillan Cancer Support

I see you’ve already been greeted by dear @DuncanB and @Spangleystar and would urge you, when you’ve got the bandwidth, to read Spangleystar and @Byrnebaby’s incredible thread about their stem cell treatments: Cyclophosamide priming

Here’s some Blood Cancer UK information about stem cell transplants: Blood cancer treatment types | Blood Cancer UK and from Macmillan: Stem cell and bone marrow transplants | Macmillan Cancer Support

I live with a different type of blood cancer called Polycythaemia vera ('PV') which can also progress to different types, so I can appreciate how this recent change might feel for you now. Personally I find therapy invaluable for figuring out the sort of rolling grief that often comes with changing diagnoses like these. Don’t hesitate to ask if you’d like some tips for finding a counsellor/therapist, aside from via your GP.

If you’d like to talk about the medical side of things with the lovely specialist nurses at Blood Cancer UK their free number is 0808 2080 888.

Keep us posted about how you get on please @LouiseB.

[Spangleystar]

Oh bless @Duncan it’s a fantastic example of the support this community offers @LouiseB but I heavily caveat it with 1. It’s over 1k messages long 2. It is a tough read at times and finally 3. These are our personal experiences and may not be the same for everyone, so if you do go to read it maybe leave it until closer to the time xx

[Spangleystar]

Ps @Duncan that was a British ‘oh bless’ not an American ‘bless your heart’ I know you know xx

[Duncan]

Oh no need to explain, I do miss a good secular British “bless you” so thank you for that @Spangleystar!

Thanks too for welcoming @LouiseB in such a lovely way, I’m sure your shared wisdom will be very helpful.

[Angelic13]

Hi, thank you for your kind reply. Where do I start as trying to find others who have been or/are going through what we are.
Ben age 24 had a jaw ache on Wednesday and we sent him to the dentist. On Saturday night he had partial hearing loss and asked to go to A&E so I took him and all they could see was a partial protracted eardrum and put him on prednisone. The following Wednesday he was in excruciating pain in his spine and took him again to A&E on 26th August and he was admitted to Lincoln County and we are now in Nottingham City. He had radiation therapy and Chop chemo as a holding measure as they did not know what he had and after lots of scans and tests he has Acute myeloid leukaemia ('AML'). He is on day 20 of his cycle of flag Ida and ventoclax. He cannot walk or move his legs as the nodes are pressing on spinal nerves. I am self employed and work with his dad so we have closed our business and someone stays with him 24 hours a day. He has two siblings and one isn’t coping too well and we are trying to sort with anxiety but it’s hard.

Helen

[Duncan]

Hello there @Angelic13, I’d say starting here on the forum is a really great place to find others.

I see that dear @DuncanB reached out and would say his posts about coming out the other side of treatment for Acute myeloid leukaemia ('AML') are full of invaluable tips, but it’s worth bearing mind that we all have such unique health histories that no 2 of us will have the same experiences or treatments.

Hope you don’t mind me checking but as you mentioned your son being in hospital in Nottingham I note there’s a Maggie’s there, should you want to pop in to check out their resources: https://www.maggies.org/our-centres/maggies-nottingham/

There’s some great information here about working with blood cancer which has plenty of links to further information: Working with blood cancer | Blood Cancer UK

Here’s some information that your son may appreciate reading about being a young person with blood cancer: Blood cancer and young adults | Blood Cancer UK

I really would encourage you to call the Blood Cancer UK nurses on 0808 2080 888 as they are experts and can direct you to more specific information. They are also lovely and will offer you a keen ear at this horrible time for your family.

If you’d like to look into counselling for anyone in your family at this stressful time then you can ask for a referral to CBT (cognitive behavioural therapy) via your GP but the wait is likely to be long, unfortunately. Family therapy might be an idea as your son’s diagnosis and treatments obviously affect you all, something to consider.

You’ve likely heard of Mind who offer counselling, and you can also seek a therapist/counsellor through UKCP and BACP as well. Maggie’s offer counselling and so do Leukaemia Care: Leukaemia Counselling Service | Free Counselling Grants - Leukaemia Care

Perhaps continue looking around the forum as I personally find reading how others are getting on with a similar diagnosis to myself often helps reduce my anxiety about tolerating all this. Would your son want to join us here?

Do please keep us posted @Angelic13, and don’t forget the Blood Cancer UK nurses are right there for any queries you might have.

[PinkScot]

Hello everyone,

I’m Lotty and was diagnosed in April of this year with Polycythemia Vera (Polycythaemia vera ('PV')). I was tested as JAK2 positive. I initially went to the GP with pains in my feet so they tested me for gout but also did a full blood count. She told me I was very anaemic so I started on iron and tablets for gout. I was surprised as I eat healthily and am not overweight, but not surprised about the anaemia as I was so fatigued.

I had a range of other symptoms I had put down to menopause (at 55 years old), such as itching and brain fog / memory problems / night sweats.

I was then later referred to a haematologist but told there was a 16 week wait in Scotland so I went private as I am lucky enough to have cover with Bupa. I was instantly diagnosed with Polycythaemia vera ('PV') and the doctor sent me for urgent venesection as I had very high numbers. He said I was surprised I had walked into the clinic which was slightly disconcerting!

After nine venesections of 500ml each week I got my numbers down at which time my iron has dropped down to virtually non-existent and the rate of red blood cell production has slowed down. The problem is now I feel utterly exhausted - utterly totally exhausted. I have had more venesections since then every 3,4, weeks or so and my numbers are ok.

Luckily I am retired but have high demand children (young adults) who need a lot of support for their mental health, and an elderly mum who I look after nearby. Its been tough.

My consultant has now referred me to the NHS for chemo - probably hydrocarbamide - which he says will make me feel a lot better. I’m not sure as most people say it causes fatigue.

I feel a little bit down after 6 months of this rollercoaster ride I am starting to realise this is a marathon not a sprint, and I need to slow down a bit thanks for reading and the forums have been a great support just reading everyones stories x

[DuncanB]

Hi Lotty @PinkScot and welcome to the forum. You’ll find that it’s a really supportive group here on the forum.

I was sorry to read about your diagnosis and the challenges you are facing.

I’m also in Scotland and was really surprised to hear that you would have to wait 16 weeks to see a Haematologist.

When I had bloods taken when I went to see my GP who took one look at my side and said that looks like a mass on your side I was in the Haematology Clinic 2 working days later.

That was in October 2023 and perhaps demand has changed.

My diagnosis was another Myeloproliferative neoplasms ('MPN') called Myelofibrosis. I regularly needed Blood Transfusions as they tried to get me to a point where a Stem Cell Transplant was an option.

It took 16 months to get to Stem Cell Transplant and doing well 18 months on.

Another forum member @Duncan tends to be a bit of an oracle on Polycythaemia vera ('PV') and I’ve tagged him as I’m sure he will be able to offer words of wisdom.

Hope that helps and take care

[PinkScot]

Thanks for your reply. I wondered about the wait and my consultant who worked in the NHS also said once it had reached the specialist they would have expedited it, but of course I will never know now. My GP is lovely but two other GPs were very dismissive, they told me the 16 week wait and they told me that the results were not important and to focus on my gout tablets and iron tablets, which were of course making me worse as iron tablets were making my blood much thicker!
As it happened during taking the iron tablets I went on holiday and took some time to relax with Dr Google AI who diagnosed me quite clearly from my blood count! So I stopped the iron tablets and started taking baby aspirin and I also got up every hour on the flight home and stayed very hydrated. I genuinely think this could have saved my life or at the very least a blood clot occurring on the 9 hour flight.

My numbers are all under control now and my GP has apologised so I’m happy, I survived and took control, you know your own body best and must always advocate for yourself.

Next step is back to NHS so will see how long the wait is this time .

[DuncanB]

Glad to hear that your numbers are now under control @PinkScot

Hopefully be seen quickly by NHS Haematology Team and can plan the way forward.

If you feel up to it, do give us an update when you can. I know everyone learns from what others share.

Take care

[Duncan]

Hello there Lotty @PinkScot, welcome to the forum and may I just say I’m really sorry to read of this whole diagnosis saga and it leading to Polycythaemia vera ('PV'). I’m really glad you found us. Definitely take your time with all this, it’s a lot to take in.

Like dear @DuncanB says you’ll find a friendly bunch here, and you know strangely enough despite Polycythaemia vera ('PV') and other Myeloproliferative neoplasms ('MPN') being so rare there are many folks here living well with and beyond them.

I was also diagnosed with Polycythaemia vera ('PV'), in 2023, and much of what you’ve shared is very familiar, although I would never describe myself as an oracle, @DuncanB! Maybe more of a motivated survivor?!

Sounds like you’ve been dealing with many of the ‘classic’ Polycythaemia vera ('PV') symptoms @PinkScot, like the itching and brain fog, and aren’t they rubbish? Here’s some information about them and ways to manage, should they flare up (cooler showers seem to be a common way to help offset itchiness): Polycythaemia vera (PV) symptoms | Blood Cancer UK

For me after my diagnosis and starting treatment with hydroxyurea I got nasty fatigue which really got me down as I couldn’t be as active as I liked to be. Brain fog was terrible too, but that may have been mixed in with high emotions like grief.

Thankfully the fatigue and sense of loss faded over a few months and I got back to hiking and more typical energy levels. From what my haematologist tells me the fatigue can be a mix of the Polycythaemia vera ('PV') causing our bones to overproduce blood cells, plus treatments affecting our energy levels. Stress is obviously pretty tiring too isn’t it?!

I found doing slow forms of movement like yoga really helped give me a boost, and on my most fatigued days I could do some stretching at least. As my blood cell numbers stabilised, and I suppose my blood got thinner, I noticed my energy improved and I felt more clearheaded.

Also, I get the impression that our haematologists try us with different dosages over time, whichever of the medicines we’re prescribed, until they find a good balance for us individually so we can maintain our energy while limiting the potential side effects of, for example, hydroxyurea. It took about 2 years for my treatments to stabilise my blood cell numbers, but my energy returned far sooner like I said.

I’m sure you’ve had a good read already since your diagnosis but I’ll share the great Blood Cancer UK information about Polycythaemia vera ('PV') for your reference, I still go back to it a lot: Polycythaemia vera (PV) | Blood Cancer UK and from Macmillan: Polycythaemia vera (PV) | Macmillan Cancer Support

So I’d say with empathy that it’s no wonder you feel down. All this testing and then Polycythaemia vera ('PV') itself is so much to take on, even with a smooth diagnosis process, but it sounds like you really had to dig for this information and juggle it with other health and family challenges.

Would it help to give the lovely Blood Cancer UK nurses a call to talk this through? They can suggest further resources and ways to give yourself a break right now. Their free number is 0808 2080 888 and they can be emailed at support@bloodcancer.org.uk.

It’s great that you were able to be tested faster than the quoted 16 weeks! Shows real self-care and knowing yourself, and perhaps another way to care for you now is to give yourself a break when you can. Perhaps your adult kids appreciate that their mum could do with support now and help out a little more in their own ways?

I found after my diagnosis that I had to practice not doing so much around the home, pausing some responsibilities, and relying more on my loved ones so my minimal energy could go further than, for example, doing the dishes. I prioritised movement and eating well and rest.

Is there a Maggie’s near you? I’ve heard really good things about them and could be place to gain further ideas about resources, or simply a place to go for a chat over a cup of tea: https://www.maggies.org

One last thing but I’d say from my non-medical perspective that we need to always pass any change in medication and supplements past our haematologists, like starting iron or aspirin. I’d really suggest against using Dr Google or AI no matter how specific your prompts, they can only give generalised results at best, and in my case totally inaccurate information which could have held me back from my successful treatment. Similarly to you I was taking an iron supplement but thankfully mentioned it to my haematologist who was like no!!! Aspirin I believe is often prescribed to us to thin our blood, and I’ve been taking it daily without issue since a heart attack many years ago. I just have to remember not to mix aspirin with other NSAIDs as painkillers, using paracetamol for that.

Right well I’ve gone on a bit and I hope at least some of it is useful at this worrying tome for you Lotty. If there’s anything specific you’d like to find out about please don’t hesitate to ask. If you’d like to read more from other forum members living with Polycythaemia vera ('PV') there are many in this lovely long thread—full disclosure, this was my first post after diagnosis: Now part of the polycythaemia vera posse

Really glad you found the forum Lotty and do please keep us posted about how you get on.

[Tee70]

Hi @Angelic13 I’m in a similar position to yourself.
My daughter has Acute myeloid leukaemia ('AML').
Happy to chat.
We have been on this journey since May.

i have just signed up to this forum and read your post

[Angelic13]

Hello, thank you for replying and would love to chat. It’s late and I have left the hospital,

Got home, quick shower and need to go bed but will be back tomorrow so hopefully If free we can chat tomorrow night as I’m so scared.

Night H x

[Heidi_BloodCancerUK]

Hello @Angelic13
I’m sorry to hear you’re going through what sounds like an anxious and stressful time. I hope you managed to get some sleep.
Please know we’re only a phone call (0808 2080 888 option 1) or an email away (support@bloodcacner.org.uk) if ever you want to talk things through, or if there’s anything we can do to support you, now and going forwards.

Absolutely no pressure or rush to look into these, but I thought at some point you may find it useful to read through our webpage here - Looking after yourself when someone you love has blood cancer | Blood Cancer UK. It talks about looking after our mental health and ways of accessing emotional and psychological support. There’s also information around supporting someone going through treatment - How to support someone through blood cancer treatment | Blood Cancer UK.

Take care, Heidi.

[Heidi_BloodCancerUK]

Hello @Tee70
Welcome to the Forum. Thank you for posting and replying to Angelic13.
I am sorry to read about your daughter. May I ask how you are both doing?
Please know you would be welcome to call or email us too. We appreciate you may well have lots of support and information from the haematology team, but we are also here for you; should you ever need or want to talk to us.

Another Forum member @SarahMum has written a few threads which you may want to look up, as her daughter also had leukaemia. She is very open, honest and approachable, you may find her posts helpful.
Do get in touch if there is anything we can do to support or help you.
Take care, Heidi.

[SarahMum]

Hi @Tee70

I am sorry to hear the news about your daughter. As @Heidi_BloodCancerUK has mentioned I have quite a lengthy thread on here following my daughter’s Acute myeloid leukaemia ('AML') diagnosis.

Happy to chat/support in any way I can.

Sarah

[SarahMum]

Hi @Angelic13

I am sorry to learn of your son’s diagnosis. I have a rather lengthy thread on here since I started posting when my daughter was diagnosed with Acute myeloid leukaemia ('AML') at the age of 20 years old.

This forum/community is soooooo supportive. If I can help/support in anyway please shout. I would also recommend booking a telephone appointment with the @BloodCancerUK_NurseandSupportTeam . It can sometimes be helpful to have input from an independent expert and all the team here are fantastic.

Make sure you look after you too. Sending a big hug and positive thoughts

Sarah

[Angelic13]

Thank you. I will have a read later when Ben goes to sleeep. Xxx