[teds31Participant]

I have been smoldering for over 10 years and today I went for my check up and the Doc said they were thinking of giving me an injection of hemoglobin to help with my immune system as I have serious chest infections.Has any one else had this treatment and if so does it work, as it seems that I will have to go to the hospital once a month,to have it done which will seem a lot but if its worth it OK. Ted.

[jmsmythParticipant]

Hi Ted

I don’t know about adults but one of my sons, when a baby, had one chest infection after another. Things where really bad – they test d him for cystic fibrosis (thank God – negative). They suggested hemaglobin injections. He had them and it was great for him. My hubby is 3 year remission and recently he has had quite a few chest infections. At last meeting with registrar this as brought up and registrar said that blood results didn’t warrant the injections.

Hope you get sorted Ted
Jean

[teds31Participant]

Thanks Jean, I will have to wait quite a while for results as they dont intend to start until later in the year as I dont get as many infections in summer and it would be difficult to tell if it was doing any good (a good point) so they intend to start about August I think.Hope it works ,but we have to try anything as you know. Will try and let you know how it goes. Ted

[jmsmythParticipant]

Hope it does work for you Ted. Keep us informed

Jean x

[teds31Participant]

will do. Ted

[jellytotParticipant]

Hi Ted and Jean, I am on treatment –  rev, cyclo and steroids – but it has been interrupted so often with severe infections that I am getting Iv ig (intravenous immunoglobulin ) every three weeks. It is ridiculously expensive – over 1000 blood donations produce enough plasma to produce a tiny bottle of ig. The first thing I noticed was my energy levels were improving but they wear off as you get closer to the next Iv. You should feel much better very soon!    Jane

[iangParticipant]

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

[jellytotParticipant]

hi Ian, 

no sct yet, I have  very stubborn pps and light chains! My pps were 34 in sept and 28 last test. As soon as I get a run at treatment I need to stop with yet another hospital admission. My igg, iga and igm are all depressed and my neutrophils can be stupidly low. However, my bones are great! Myeloma is clearly a very individual disease.

best wishes

Jane

 

[teds31Participant]

Hi Ian and Jane, Having read Ians message I now realise that I have got it wrong,not difficult when you are in with a consultant and under stress, she must have said “Immunoglobulin” because she did mention that it was taken from blood donors after the plasma as been removed,and of course it refers to white blood cells not red cells. Thank you both for helping me out with that.I have found some info on the NHS site which is helpful but as I said they dont intend to start until later in the year and I shall have the opportunity to ask questions at the next 3 month appointment armed of course with your info. Thanks again for putting me right and I will let you know the results. Ted.

[HarmonyParticipant]

Hi Ted,

Hope things work out for you. when I read that you’ve been smouldering for over 10 years I felt much more positive about my own smouldering state. Just wondering, do you follow a special diet or take any supplements which may have helped you to remain in a smouldering condition? I have been smouldering for nearly 3 years and I’m trying all manner of things.

[teds31Participant]

Hi Chrissie, I realise how lucky I am and believe me its shear luck ,I was diagnosed with MM over 10 years ago now and have had no treatment of any sort since,I go along every 3months and have the tests and go home.I do have a problems with infections mostly the chest as I also have a lung disease,and thats why they are going to give me the transfusions.
You ask if I take any thing no I dont ,I dont have a special diet or take suppliments, though I can see they may help people who are suffering from other health problems as MM can have effect on other parts of the body.
It can be a strain when the hospital visit gets near but when you read some notes from other people on here you realise how lucky we are, so keep smiling and long may you smoulder. Ted

[HarmonyParticipant]

Hi Ted,

You’re right- we are incredibly lucky so far and long may we continue to be so. I have to admit that I was hoping that you could give me a long list of things to do and take to keep smouldering – I guess we all hope for some kind of miracle. Knowing my luck, I’ll end up poisoning myself with all of the concoctions that I take! At least, I’d die feeling in control! Sorry to hear about your problems with infections – I take selenium with added vitamins a,c and e. It’s meant to boost the immune system. Perhaps this could help you? Holland and Barrett sell it. I spend a lot of time in Holland and Barrett nowadays.

[teds31Participant]

Hi Chrissie,
It would be nice to think that we could take some supplement and all would be well, but over the 10 years or so I have found that for me its best to try and ignore the thing and wait for the next appointment,I have so many other health problems (Iam 84) that MM takes a back seat except just before my next 3monthly appointment.Take care and all the best. Ted

[peteParticipant]

Hi guys iam a year into this smouldering  iam 56 years old and been disabled 16years I gave up smokeing last February and 2mths later I have cancer iam not doing to well dealing with this I keep getting infections all the time and now keep getting nose bleeds so something else to tell them next week I have to go evry eight weeks

[HarmonyParticipant]

So sorry for what you are going through. Sounds like you are having a difficult time. This is a cruel disease which randomly strikes – I have never smoked, am not an excessive drinker, have never taken drugs, have always tried to eat healthily and exercise and I’m 43 years old. I have been smouldering for 2.5 years. I guess we all have to take one day at a time and try our best to keep our chins up. At least they are monitoring you closely.

[Author]

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