Thank you for taking the time to respond . I had my consult online yesterday with lead nurse . Because I have started to react to the steroids after nearly a year, they are reviewing my treatment . I have been taking 20 dextramethasone 1 x monthly with the carfilzomib treatment since January this year but my fingers started to lock after taking the steroids noticeably over the last two months . My light chains have gone up again slightly 150 from about 50 all through the last few months (they were 10,000 when I was first unwellā¦. so not as active but rising again) so it would seem my body has acclimatised to the current treatment (?). They are looking at other options @Erica . I was a bit tearful yesterday (unlike me) and woke up in the night praying and crying again .i think like @Shaka more frustrated and fed up . Itās 3:30 am and Iām awake . Sorry if Iām repeating information Iāve already shared . The good news is the spots on my upper shoulder/back (3 or four )are not myeloma, but a reaction to one of the drugs - they are looking for advice from dermatologist to treat topically . Each one of us responds differently to treatment, so donāt let my own personal treatment experience scare or put anyone off. I have some physical challenges (hip and spine) but been reasonably active, happy and back at work since June (working from home behind a computer ) but this is a blip period I think .
I am due 2 x MRI next week (thorax and thigh) to see firstly how the radiotherapy has worked on my thigh. I get quite tired - more fatigue but trying to take one day at a time . I think the stem cell transplant is a long way off .
Good morning Mayo,
Sorry to hear about your fingers ,is this neuropathy ? Im starting to get the pins and needles again since i started dvdt on friday.Dont we all love the DEX
I try to put a light hearted spin on it but sometimes like you in the early hours it gets the better of meā¦ Guess its all part of the journey we face but i find it does help talking to people in the same position.All the best mayo and hope your not feeling too down.
Hi @Mayo57 yes, as the Mama and Papaās sang 'the darkest hour is just before dawn, hence your late or early post, however you look at it.
Perhaps you just needed to be a bit tearful yesterday and when you woke up.
I think I just get so worked up and anxious about anything around my condition and symptoms and I can get so tearful too and sometimes I am confused why.
I have been like it since my diagnosis, before diagnosis I was never tearful.
Please let us know how you get on and keep posting at any time.
We are here for whatever you want, blips and all, that is definitely what I need our forum for.
Be kind to yourself
Hello all, just wanted to let you know that weāve created new information about myeloma, online and in print, with a group of people affected by myeloma, some of whom use this forum! Order copies of the booklet for you, your family and friends for free from Myeloma booklet and download | Blood Cancer UK Shop or go to our website: Myeloma | Blood Cancer UK
Hi all, just been having a quick look through this thread, Iām posting on behalf of a family member who has smoldering Myeloma. Has anyone any experience with this? Sheās being seen every few weeks at the moment and is getting several symptoms which may or may not be related, sheās finding it difficult to know? One recent one is that she went on a walk and after her ankle really swelled up? Obviously everything worries her so wondering if anyone else has a similar experience? Thanks
Hi @AnnaMam great to hear from you, yes, isnāt it difficult to know if the new symptoms we seem to get so frequently are down to our conditions or something completely different.
My non medical philosophy is if the new symptom is concerning me then it is worth getting it checked out by my GP, specialist nurse or consultant.
I also find I sometimes have to remind medical people of my whole medical history.
I will copy your post to the Blood Cancer UK nurse advisors for you in case they can add anything @BloodCancerUK_Nurses
I hope others can help with their experiences.
Look after yourselves and please keep posting xx
Thank you for sharing, and I do hope youāre doing okay? As Erica has said it can be difficult to ascertain whatās causing new symptoms, and itās so normal to worry about them. Iām sure others can share their experiences, too, but weād certainly encourage your relative to share any symptoms theyāre concerned about with a medical professional involved in their care. In case itās helpful at all, Myeloma UK have an infosheet about smouldering myeloma, which may be useful for reference.
If you, or indeed your relative, would like to talk anything through, please donāt hesitate to reach out to our Support Team on 0808 2080 888 or support@bloodcancer.org.uk.
Thanks Erica, I have already urged her to speak to her team and they donāt seem bothered but she is so Iām just seeing if I can help by doing a bit more digging, and we do know that sometimes we have to advocate for ourselves.
Many thanks for forwarding this to the nurses and as always your support it very much appreciated, I hope you are doing ok yourself x
Thanks Tanya, Iām a long-term Ambassador so am aware of all the resources etc which sheās already has and in fact she said āIāve had more support from BCUK then from my GP or consultantā which was nice to hear from the charityās perspective but not really from the medical perspective. She has already shared her symptoms and didnāt feel happy with their response hence why she came to me and why I posted in here. I wanted to see if anyone else had experienced swelling. As an Acute Myeloid Leukaemia patient myself I am well used to having to push for better responses from clinicians, especially in our area which is Lincolnshire. Thanks again
Sorry to hear your family member is going through this. Iāll ask the @BloodCancerUK_Nurses to have a look at your post. She could always look into getting a second opinion too if she felt like that might be useful at all. Let us know how we can support at all.
Thanks so much for reaching out on behalf of your family member. It sounds like she is certainly struggling somewhat. Iām sorry to hear there wasnāt much reassurance from her team.
Does she have a clinical nurse contact at all?
It can be tricky to identify causes of intermittent symptoms in SM as you will be aware it is often documented that symptoms are unlikely. However we know that everyone is affected individually & any unusual/new joint pain should be raised to the team overseeing the care.
If the pain recurs or persists it might also be an idea to seek advice from her GP who can be a support in communicating with her haematology team but also offering short term relief.
Itās so important she feel support in her team & listened too. If this is something she feels she is lacking Aliceās suggestion of a second opinion is a really valid one. Also if she is open to the idea, she is also very welcome to call our support line or we can arrange a scheduled call to talk things through with her. Please do just let us know.
I have myeloma. I canāt say that I experience any swelling apart from going through treatment in my ankles
Thatās not to say it doesnāt happen
Does you mum have other medical history that could cause the swelling
What other symptoms and how are her bloods doing
Thatās good that she is being monitored every few weeks and raising concern about issues that arise and any change in her bloods I hope they will be on top of.
I raise any issue such as recently a pain in my foot and couldnāt bend it as I walked and concerned though rare for myeloma in the foot
My consultant pressed around ankle and foot but couldnāt feel anything and it didnāt hurt when he pulled and pushed and bent my foot
He ruled out myeloma as the bone would have been painful to touch let alone prod.
He said to keep an eye and rub ibruphen gel into it
But itās noted
I was browsing through the chat and read more of your medical history.
I have monoclonal gammopathy of unknown significance (MGUS).
How is your foot pain? Did you have any tests done.
I have an ongoing pain in my ribs area and since the end of summer in my foot. Has your pain improved?
How are you doing?
My foot seemed to rectify itself after a few weeks thankfully
Rib pain is a common symptom for myeloma they become very painful to touch if there are lesions.
I have just had a PET scan to have a look at mine to see if they are active as I have some painful areas.
With my myeloma I have boney disease I had a lot of bone lesions when I was diagnosed in 2017
Are you monitored with your monoclonal gammopathy of unknown significance (MGUS)?
Thank you for your reply.
Yes, I am monitored for monoclonal gammopathy of unknown significance (MGUS) but the hematologist sent me only for a chest x-ray for the rib pain.
I did privately a chest MRI in Poland ( this is where I come from).
But I live here and I would like to be examined somewhere here.
The hematologist here thinks that monoclonal gammopathy of unknown significance (MGUS) is stable but my blood results are getting worse. Although he said that with my monoclonal gammopathy of unknown significance (MGUS) they will be worse every time I do the tests.
I have IgA paraprotein detected.
On my hospital app there is a chart which looks worse and worse. And light chains increased by a lot. Between July and October they raised a much as they did over 2 years.
For the last 2 years I only had telephone consultations.
The hematologists sends me to my GP.
But they are not much help either for my foot pain no one even examined me ( again had only telephone consultation).
The gp recommended to use insoles and sent me for physio, which I will probably have to wait for months. Refused to sent me for any foot scans. Currently I am unable to walk without shoes.
Getting any help from the GP is a pain really.
And my back / rib pain is driving me crazy.
My husband is a radiographer and he thinks that CT would be the best test probably. I feel lost and tired of those pains.
I have booked myself for a spinal MRI in a week time, as perhaps pain starts from there?
Have a lovely Christmas!
Take care
A.
@Anna82 oh bless you
Itās good to read that your being monitored and your having regular blood tests and your protein and light chains
Iām going to link you the gp guide to myeloma
I had a fractured T9 and it was agony I couldnāt lie down and once I managed too I couldnāt get back up I was crying in pain. That pain radiated into my ribs. The fractured was diagnosed by CT scan
I was 7 weeks into my first lot of chemo but it wasnāt getting my myeloma under control.
My protein was 45 light chains 1200 on diagnosis in 2017
I have IGG kappa light chain myeloma with boney disease
When I was relapsing in 2021 my protein and light chains were monitored for around 6 months
I was getting more pain in my lower back as well.
Is your rib/back pain causing you to walk differently?
To add to my last reply
A close dear friend was diagnosed with myeloma about 7 months ago after struggling to walk and lie down
They only had an x ray where they found a few rib fractures and thinning bone near base of spine with that and blood tests Protein and light chains found and myeloma diagnosed
6months of chemo and they are doing well
Pain under control and bloods near to normal.
Waiting for next steps as they dint want a stem cell transplant
. Sorry if Iām repeating information Iāve already shared . The good news is the spots on my upper shoulder/back (3 or four )are not myeloma, but a reaction to one of the drugs - they are looking for advice from dermatologist to treat topically . Each one of us responds differently to treatment, so donāt let my own personal treatment experience scare or put anyone off. I have some physical challenges (hip and spine) but been reasonably active, happy and back at work since June (working from home behind a computer ) but this is a blip period I think .