My husband has just been diagnosed with WM. the consultant was most unhelpful in telling us anything about it. What it is, what to expect, how to help my husband etc. He is so very very tired all the time. He can do anything at all without going for a sleep after. Is there anything I can do to help him would you know?
Thanks for reading.
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Hi @Vitaspin, a very warm welcome to our forum. It seems as if you have found the right place to post. It must be so difficult for you feeling so helpless to help your husband.
It might sound unhelpful to say that perhaps your husband really needs to speak to one of his medical team, has he got a CNS (clinical nurse specialist) or his GP? I say this because they know him medically and not just as a diagnosis.
I have found it really worth writing a list of questions I would like to ask so I do not forget anything and even cover my fears and if there is anything that might help him.
You will find a lot on this forum and the Blood Cancer UK website about fatigue, which is different to just tiredness. I find my fatigue can come on if I overdo it mentally, physically or practically. I also do not deal with what personally stresses me and that can bring on my fatigue.
The main thing I think is that you both look after yourselves, eat a fairly sensible diet, although I do have the odd treats, get a bit of fresh air and appropriate exercise and spoil yourselves.
Please keep posting how you both are.
A warm welcome to the forum @Vitaspin, I am so sorry to hear that you and your husband felt that the consultant could have been more helpful. May I ask how you’re both doing at the moment?
In case it’s helpful at all we have a factsheet on WM which you can find here https://media.bloodcancer.org.uk/documents/Waldenstrom_macroglobulinaemia_WM.pdf
Also, our Living Well pages on our website has some information around managing fatigue, which you and your husband might find helpful - https://bloodcancer.org.uk/support-for-you/living-well/.
You might also find some tips on this conversation re fatigue - Fatigue - what has helped you manage? (Facebook post)
I wonder if anyone on here as any tips around talking to their consultants and what they found has worked for them to ensure they get the most out of their appointments and conversations?
As Erica said above, I’d encourage you and your husband to find out who his clinical nurse specialist/key worker is, if you haven’t already, as they are really good points of contacts to have and they’re available to contact in between appointments to talk things through.
Really glad you found this forum and I hope you find it a welcoming and supportive place @Vitaspin. Remember our support line is only a phone call away too on 0808 2080 888 if you ever want to talk things through with us. It’s free and confidential.
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Thank you for you reply. We have managed to change to a new consultant. One who has been highly recommended by the WM world. Appointment is on the 15 September, which was her first available appointment. One comment about this lady was “she walks on water!” Amazing recommendation.
We look forward to actually meeting a consultant rather than over a phone. Have a “barrage” of tests, as they stated. To find out exactly what is going on.
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This is really good to hear @Vitaspin, I really hope that you and your husband find his new consultant more helpful in answering your questions and helping you to understand what’s going on. How are you both doing at the moment?
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Hi Everyone, thankyou for allowing me to join the forum, I have recently been diagnosed with Waldenström’s Macroglobulinemia following having MGUS and I am currently assigned to the WM wait and watch list with a 3 monthly follow up with my consultant at Wrexham Maelor Hospital, Shooting Star unit. I have for a while been experiencing the following symptoms: balance / light headed feeling, bone pains in both legs, Fatigue, confusion and short term memory loss which seems to be getting worse over a period of time. Are these common symptoms of the blood disease and is there any advice from others, who may experience similar symptoms that may point me in the right direction, most frustrating for me is not being able to finish sentences when I am talking to someone, I know what I want to say, but just can’t find the words, although when writing or working on a computer, I don’t seem to have this issue. Thankyou.
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Hi @Keithpp I am really glad you have found us especially as you have been diagnosed at a really difficult time with Covid, a real double whammy.
I cannot help medically, but perhaps a chat with someone in your medical team might help you. I find symptoms really scary as I always think the worst and a chat might help you.
There is a lot of information on the Blood Cancer UK website, which I have also found very helpful. I have to write everything down before a consultation like symptoms, questions, thoughts, feelings, fears, medical history and practicalities and I now ensure I have taken notes, really understood and I am happy with the way forward.
We are all here to support you, whatever our blood cancer, and if you would like to chat to someone you can contact our Support Services Team on 0808 2080 888 (10am-7pm Monday-Friday, and 10am-1pm Saturday and Sunday) or via email at support@bloodcancer.org.uk.
Please keep posting to let us know how you are doing.
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Hi Erica, thanks for your reply and useful information, I will print out a document with my symptoms and take it to my next appointment in January and read more on the blood cancer website. I am a 70 year old veteran and most people say to me we all forget things at our age, but I feel that there is a bit more to the memory loss and confusion and think it may be down to whats happening in my blood, hopefully someone else on the forum may have had similar experiences and whether they were directed to medication that helped. Thanks.
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Hello @Keithpp. As Erica has said, a big welcome to this forum. I trust you will find it a supportive place. We have different blood cancers but we often find we share the same concerns and symptoms. I have a different blood cancer to you, but I do experience what I call bone pain particularly in my legs. Also, when my haemoglobin (Hb) level is particularly low I find I get ‘brain fog’ and can’t think straight. A doctor once told me that if my Hb is low there will be less oxygen getting to my brain and this can explain some of my problems. Nearly all blood cancer patients suffer fatigue and that also doesn’t help with memory issues. Hope this is helpful and that when you next have contact with your medical team they will be able to help you. Warm wishes. Willow
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Hi Willow, thank you for your kind words and useful information. I know there are a lot of people in the forum who have all suffered similar symptoms and many more have probably experienced worse symptoms, it is very encouraging to know there are people who are willing to offer support to each other. Thanks Keith
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Hi @Keithpp. Welcome to the forum. I don’t have any knowledge of your specific condition but it must be a very anxious time for you having to deal with this and the Covid situation. I hope that your medical team come through for you. You have come to the right place though to unburden yourself when you need to. Keep in touch and let us know how you get on.
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Hi Franco, thank you for taking time to reply, yes these are certainly tough times, but we must all stay positive, onwards and upwards.
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Welcome to the forum @Keithpp! Hope you don’t mind I’ve merged your topic with an existing WM one so that you can see other people’s experiences. Sorry to hear you’re experiencing all of these symptoms, it sounds tough. How are you coping? Do you have much support around?
Keith, as the others have said, I’d really encourage you to talk to a member of your healthcare team such as your clinical nurse specialist or consultant about everything you’re experiencing, as they should be able to offer guidance and advice in the context of your individual circumstances. Have you for the phone number or email address of your clinical nurse specialist? They’re often available to contact in between appointments.
We’ve got an info-sheet on WM in case it’s helpful for you, which you can find here - (https://media.bloodcancer.org.uk/documents/Waldenstrom_macroglobulinaemia_WM.pdf) We’ve also got some information around watch and wait - https://bloodcancer.org.uk/understanding-blood-cancer/watch-wait/
In case it’s helpful at all, we’ve got some info on fatigue within our living well with blood cancer pages, here - https://bloodcancer.org.uk/support-for-you/living-well/
Really glad you found this forum @Keithpp!
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Hi Keithpp my husband has recently been diagnosed with WM and we where pushed around by our local doctors. We then saw a WM expert who rushed my husband for treatment as his igm and viscosity where very high. After our local doctor said he could go on the watch and wait and didn’t need seeing for 4 months! So my advice would be is see a WM expect. Have a look at the website IWMF.com it is full of amazing information. If you are on facebook there is an amazing support group there. If I can help in anyway please ask away.
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Thanks @Vitaspin for all that information and your experiences you have really proved the worth and support of our forum. How are you doing now and how are you coping with lockdown?
@Vitaspin Hi Vitaspin,
We do hope you and your husband are doing okay since his diagnosis of WM, it does sound like you went through so much before his diagnosis was confirmed.
It’s also really good hear about other peoples’ experiences within our forum community, for anyone concerned about WM and has further questions, we would always really encourage you to get in touch with our Support Services Team: https://bloodcancer.org.uk/support-for-you/talk-blood-cancer/
And of course to echo Alice, and some of our forum members – your healthcare team overseeing your care is always your best point of call. You may also find information from the organisation WMUK helpful too: https://www.wmuk.org.uk/about-wm/what-is-waldenstroms-macroglobulinaemia-wm
And there is also the option, if anyone is feeling worried or concerned about the information they’ve been by their GP or their healthcare team, to seek a second opinion. Macmillan Cancer Support has some further information about this here: https://www.macmillan.org.uk/cancer-information-and-support/treatment/your-treatment-options/getting-a-second-opinion
Su
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Hi Keithpp
I was diagnosed with WM 3 years ago, after having been initially told it was marginal zone lymphoma, something I was never comfortable with.
I’ve haven’t suffered with the same symptoms as you but I know that others have.
WM affects everybody differently, it’s very individual and because it affects haemoglobin levels and blood viscosity it can have a range of effects.
No symptom you have should be discounted and you must not be put off by your medical team. The time for treatment isn’t only assessed by the numbers but by how the symptoms are affecting you, so it’s important you tell them.
They should be keeping a close eye on your blood levels and your Igm paraprotein.
In discussions with others I have found that notably aches and pains are discounted as being related to WM which I find strange as so many seem to suffer with this symptom.
You have already been given some very good advice and links to help.
WMUK also have a Facebook page, lots of support there from fellow WMers.
If you can’t find a WM expert near you I do know that others have linked their consultants up with Dr Shirley D’sa at UCLH in London.
You will find her details on the WMUK site.
It’s hard I know to push our own case, but this the time to be bold.
Others with WM will tell you, you have to be your own ambassador.
Get yourself armed with the knowledge and don’t give up.
I’ve been very lucky in the consultant I ended up with when it came to treatment. She agreed for me to be re diagnosed and is always willing to have a discussion with me. This was invaluable when it came to actually having treatment as she tailored it to me.
I wish you all the very best.
Oh by the way I completed treatment 2 yrs 6mths ago, my IgM went from 40 to 6. something. It has continued to drop over the last 2 yrs and has currently levelled out at 4.4.
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Hi @AnnD, how are you coping in this lockdown?
Fine thanks Erica. Much easier this time around.
Looking forward to see what these vaccines bring.
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Hi Keithpp
I too was diagnosed with WM in Aug 2016. I experienced very similar symptoms as yourself such as dizziness, bone pain, bleeding gums and breathlessness. Also experiencing brain fog but put it down to age (48 at the time of diagnosis). This seemed to ease after I was sent to have a plasma transfer as my lgm and viscosity was so high which was 52. Once this was done I felt totally different! I had so much more energy. I then started chemotherapy a short while later. It has been 4 yrs 3 months since diagnosis and 2 yrs 8 months since treatment finished. I am doing really good with now 6 monthly checks at UCLH London with Dr D’Sa’s clinic. She is amazing and is a true expert on WM. My lgm level is down from 52 to 6 and feeling great!
My advice is to list every symptom that you feel is unusual no matter how small you may think it is. Everyone is different so is also good advice for the consultants to list also. Wishing you all the very best.
Sara x
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