Hi Richard
I also had a SCT that didn’t work. That was in Sept 2014. My pp was 18 g/L 6 weeks before the SCT, and 24 g/L 9 weeks after. It rose steadily to 34 g/L in April 2015 with no treatment. I was then put on Rev/Dex (25mg/20mg), which halted the increasing pp. The Revlimid dose was reduced to 15mg after two cycles because of blood counts (neutropenia). This continued to work for a further 24 cycles, my pp was roughly stable around 30 g/L. Then my pp started rising again (to 38 g/L), so Cyclophosphomide was added to the mix. This halted the rise for 4 cycles at around 35 g/L. So you might want to suggest adding Cyclophosphomide to your treatment before moving on to something else. I had a total of 32 cycles on Rev/Dex, so Revlimid kept my pp under control for well over two years. The next treatment options suggested to me were Panobinostat or Pom/Dex or an Isatuximab trial. I am off treatment at the moment while I am assessed to see if I can be accepted for the trial.
Good luck with whatever you choose.
Best wishes, Ian
Cooked fruit and veg should be ok. Wash salads and raw fruit thoroughly. Avoid pre packed salads. The Myeloma UK Infosheet ‘Diet and Nutrition in Myeloma’ lists some foods to avoid while you are still neutropenic. Hospitals also issue lists of foods to avoid, you can find some of them by searching online. The list in the Christie document ‘Going home and the future…’ Is quite long. I must admit that later on (well past the 3 weeks you’re at) I didn’t stick to the rules completely, I do like Stilton and Stilton-like cheeses. I also had the occasional panini with a Brie filling.
Take care, Ian
I guess the question is do you have two unrelated conditions, i.e. MGUS and something else that’s causing your symptoms, or just MGUS. Presumably your GP is assuming initially that you have two conditions, and he is giving you pain killers to treat the pain. Antidepressants can be used to treat chronic pain by the way, they don’t necessarily indicate he thinks you’re depressed. Did your GP tell you to come back if there’s no improvement? The standard management of patients with MGUS is that they are monitored, and that will be what the follow up blood test is for.
I was never diagnosed with MGUS so I don’t have the first hand experience that Cygnet has.
> Cygnet. Were you referred to a hospital consultant about your MGUS, or is it/was it managed by your GP?
Best wishes to both of you, Ian
There is an informative Myeloma UK Infosheet about MGUS:
Monoclonal Gammopathy of Undetermined Significance (MGUS) Infosheet
Or
https://www.myeloma.org.uk/wp-content/uploads/2014/05/Myeloma-UK-MGUS-Infosheet.pdf
(I’ve given 2 links in case one of them changes.)
The diagnosis of MGUS is described on pages 2 and 3. As it says, MGUS is usually discovered when blood tests are carried out for another reason. It will need monitoring in case it develops into myeloma, but this only happens to a relatively small proportion of MGUS patients.
Good luck, Ian
Patents give drug developers 20 years protection with the possibility of another 5 years in some countries if a developer meets certain requirements.
NICE try to balance cost against benefit but I’m not convinced they’ve got it right in the case of pomalidomide. It is very expensive but there seem to be plenty of examples of people being treated successfully for very long periods (and it’s available in Scotland). NICE are still reviewing it, so let’s hope they decide next year to reverse their decision to ‘not recommend’ it.
Myeloma can affect your eyes (and your brain), but only at high serum paraprotein levels (>50g/L if IgG, >40g/L if IgA). The increased concentration of protein can increase blood viscosity (thickness). Hyperviscosity can affect blood flow in the small arteries feeding your eyes, causing blurred vision, and in small arteries feeding your brain, causing headache and confusion. The effects are reversible if the paraprotein level is reduced. If you are MGUS then your paraprotein is by definition no more than 30g/L, so you should not be affected. If you needed treatment with thalidomide + dex to reduce your pp level then it suggests you moved from MGUS to MM. As Rebecca says, it’s worth asking for copies of your blood test results. They usually indicate any figures that are outside the normal or reference range (with an ‘H’ or ‘L’ for example). Keep the copies in a file so you can monitor the trends of the figures that are significant in your case, and to build a back history of figures that you may not yet realise are significant.
Long term use of steroids, including dexamethasone, increases the risk of developing cataracts and/or glaucoma.
Take care, Ian
She tried at our local Boots without success then tried the pharmacy that’s attached to our GP’s surgery and they ordered one for her. Googling Limbo Elbow Protector shows they seem to be much more readily available online now, including from Amazon.
This is the LimbO UK website:
https://limboproducts.co.uk/
You can see a photo of the Limbo M75 by selecting Elbow / PICC on the home page, then selecting 11 to 17 stone. I think they’ve actually used the same photo for the M65 and M75.
My PICC line entry point was about half way between my elbow joint and my armpit so I had to wear the Limbo higher up than is shown in the picture. Note that the forearm hole is smaller than the upper arm hole.
I’ve got quite modest arm muscles but the large (M75) version was quite tight (but it worked well for me). If you select the over 17 stone or large arm circumference option here:
https://limboproducts.co.uk/configurator?selected=elbow
they will make one to your dimensions at no extra cost.
Yes, Caphosol mouthwash is supplied, it comes in quite large packs. You can also get Difflam if you think you need it. The purpose of Caphosol is to prevent or reduce mucositis, Difflam is for pain relief but may also reduce mucositis.
http://www.londoncancer.org/media/79390/Mouth-Care-Guidelines-Barts-Health.pdf
I’m still being treated at Barts, by the way. I was referred there by my local hospital for my SCT and I haven’t gone back. One of the Barts consultants gave me the choice of going back or continuing with them, but pretty much steered me towards staying with them, and I’m happy with that. My local hospital only had a locum myeloma consultant at the time.
Good luck, Ian
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I don’t believe it, to coin a phrase. I think it was because I was still in visual mode.
Try again in text mode…
iang.
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What a mess. I tried to include a photo of the M75 and it seemed to work but it created a mess when I submitted it. I’ve deleted most of it, loads of code like the little bit I’ve left above.
Try again, without the photo…
Hi Jan
It wasn’t very recent but I had my SCT at Barts two years ago. I was admitted to Bodley Scott ward, which was in the East Wing then, but it has since been moved into the extensively redeveloped KGV building. The staff were excellent, the food wasn’t brilliant but I managed to eat it. The main difficulty was boredom and counting the days.
The nurses were very relaxed about visiting. Strictly speaking you weren’t supposed to visit during mealtimes, but it wasn’t enforced.
I described my experience, when it was still reasonably fresh in my memory, in the 15th post in this thread:
I’ve linked to this before, so I hope it doesn’t look like I’m blowing my own trumpet. It’s a lot easier than attempting to describe it all again.
There’s a lot of expertise at Barts. I hope your husband’s SCT goes well.
Best wishes, Ian
Hi Steve
I had my stem cell transplant in September 2014. Like Richard, mine didn’t work, my pp was higher afterwards and kept on rising until I was put on Lenalidomide (Revlimid).
I posted a long description of my experience when it was still fresh in my memory. I’m not sure if you can create a link to a single post on here, but this this should get you near to it:
(EDIT: Maybe not, it worked when I used the link in a browser but the forum has converted it into what you see below. It’s the 15th post in the thread.)
Despite the transplant not working in my case, if I hadn’t done it I would have always wondered whether i should have.
Good luck, Ian
Hello Twitchy
My reply just got wiped by Safari reloading the web page. Sigh. Briefly, many people with myeloma have Bence Jones protein in their urine, but a lack of it does not indicate you have not got myeloma. The test can be done on a small sample, which you can provide straight away at your GP’s surgery or at the hospital, or on a 24 hour sample where you collect all your urine over a 24 hour period, typically about 2.5 litres if you’re drinking enough fluids. The nurse can provide you with a collection bottle. You may need two if you drink a lot of water (or tea or coffee). The bottle gets quite heavy as it fills so I used to pee into a plastic jug (reserved for the purpose) then empty the jug into the collection bottle. My BJ tests are done on small samples these days, which are much easier.
I’m not sure I can comment much on the other issues you have, apart from having to put trust in your doctor / registrar / consultant. They will be trying to understand what might be causing your symptoms.
An abnormal ESR can be an indication of myeloma but it can also be an indication of many other conditions, including arthritis.
Good luck, Ian
Hi Ted
Are you sure your doctor said haemoglobin injections?
Haemoglobin is in your red blood cells, it carries oxygen from your lungs to the rest of your body. Low haemoglobin is anaemia, which can make you feel tired or breathless. If you have anaemia that needs treating you will probably be given a blood transfusion in the first instance, and the hospital might want to investigate the cause of the anaemia (that’s how my myeloma was diagnosed). Alternatively you can be given EPO (erythropoietin) injections to stimulate the production of red blood cells. You can inject EPO yourself.
It’s your white blood cells that fight infections. Your immunity to infections is reduced if you have a low white blood cell count, in particular a low neutrophil count (neutropenia). Both myeloma and chemotherapy can lower your neutrophils. If you are neutropenic, G-CSF (granulocyte-colony stimulating factor) injections can be given to stimulate your bone marrow into producing more white blood cells. (It also stimulates the production of stem cells.) You can inject G-CSF yourself, there’s no need to go to hospital.
Good luck, Ian
Hi Jane
Sorry to hear you’re on intravenous immunoglobulin. It’s not something I’ve come across before. Reading about it, it seems to be mainly used to treat immunodeficiency diseases. Was your immune system damaged by a SCT?
I’m on Rev + Dex too (cycle 13) but without the Cyclophosphamide.
Take care, Ian
Hi Angela
High ESR can be caused by a number of conditions. The test is cheap and non-specific, i.e. it doesn’t indicate a particular condition. If your GP rules out more likely or obvious conditions she might suspect Myeloma in which case she will refer you to the haematology / oncology department at a hospital for more tests, including those suggested by Karen. If blood and urine tests indicate Myeloma they can also do bone X-Rays, one or more scans (MRI, CT, PET), and a bone marrow biopsy (BNB). Diagnosis is usually confirmed by finding Myeloma cells in the bone marrow.
See for example:
http://www.cancerresearchuk.org/about-cancer/type/myeloma/diagnosis/tests-for-myeloma
But this is getting way ahead of where you are now. Myeloma is a rare cancer and I should think there is a good chance that your abnormal ESR is being caused by another condition.
Good luck, Ian
Hi magicmoments (lovely username by the way)
I’m sorry to hear about your husband’s diagnosis and spine problems.
There’s lots of information about myeloma in Myeloma UK’s publications
http://www.myeloma.org.uk/information/myeloma-uk-publications-list/
It might be best to cross the cytogenetics bridge if/when you get to it. But if you want to read about it now here’s a recent article that contains lots of info:
http://www.nature.com/bcj/journal/v5/n10/full/bcj201592a.html
Mayo Clinic’s mSMART has 3 risk categories based on cytogenetics: standard risk, intermediate risk and high risk. Here’s their latest guidelines for newly diagnosed myeloma:
http://nebula.wsimg.com/4249c5fe4882f3bc9682df0076015f51?AccessKeyId=A0994494BBBCBE4A0363&disposition=0&alloworigin=1
(a note for anyone reading this in the future – this link may not work eventually because Mayo update their guidelines fairly frequently)
Your husband’s consultant will probably concentrate on the paraprotein level in the clinic, plus possibly the FLC results. The consultant, and other staff treating your husband, may also comment on Hg, WBC, platelets, neutrophils and creatinine, or may just say things like he is anaemic or his kidney function is ok. With your nursing background I’m sure you’ll be able play that by ear.
I guess the weight loss might be due to the myeloma, or loss of appetite, or muscle wastage due to lack of exercise. I weigh myself daily just after getting up in the morning, i.e. before getting dressed and before eating or drinking anything. My weight fluctuates through the week within a range of roughly 1.5kg, to a certain extent in time with the medication I’m on. If my weight starts drifting up or down I try to adjust how much I’m eating.
These NHS underweight food suggestions might help:
http://www.nhs.uk/Livewell/over60s/pages/underweightover60.aspx
http://www.nhs.uk/Livewell/Goodfood/Pages/Underweightadults.aspx
Good luck
Ian
