[AmelieParticipant]

John is in remission now after his sct in the beginning of August. There is no traces of the disease in his bone marrow and his m component is down to 2,4. He is working half time expecting to be back full time in February.

My question is now how dangerrous is a cold to him now? And is he more likely to catch it than anybody else? Thanks in advance for your help!

[DaiCroParticipant]

Hi Amelie,

It is good to hear John's positive news. I think that we are more perceptible to infections in general because (I believe) infections and bone marrow are closely connected and our bone marrow is weakened by the disease.

There is a product here called Vick's 'First Defence'. It is a nasal spray used to fight infection at first signs of a cold. I tend to use it when someone near me has a cold and I often use the spray as a preventative when I go to crowed places (malls, cinema, social events etc.).

It may well be all in the mind but it has worked for me (so far) 🙂 so I swear by it.

Dai.

[AmelieParticipant]

Thanks for the reply! May I ask if you catch a cold despite the spray is it then more tough and more difficult to get rid of?

[PerkymiteParticipant]

Hi Amelie, Great news he is in remission, has John had the Swine flu Jab? The annual Flu jab works for me before I was 65 and could get it on the NHS I was always having colds, some would last months. Since I have been having the annual flu jab, touch wood, I have not had a cold I can think off (3 years now).

I go for my my first check since my SCT (15th December)on Tuesday 11th January, I will make a point of asking about it.

kindest regards

David

[TinaParticipant]

Hi Amelie,

Great news that John is in remission – enjoy every minute.
Patrick was admitted to hospital at 2am Christmas morning with a temp of 39 deg, preceding this he had be suffering with a hacking cough but no other symptoms.The hospital was amazed that he had not been given Tamiflu tablets, the "inoculation" for swine flu and they gave them to him there and then, Patrick was very poorly & on IV antibiotics for four days, once discharged his cough has continued but is improving. When visiting the consultant last Thursday it was confirmed that he had actually contracted swine flu!
In my humble opinion I would make sure John gets the Tamiflu meds and has the flu jab as well as yourself. I expect John's neutrophils have now risen to a "normal" level but I certainly would still take all the precautions available.

Regards

Tina

[roncantrillParticipant]

Hi Amelie, Great news about the remission and long may it last. Pauline had her SCT in January and got the same news in August so we are about 6 months ahead of you. I think it has to be accepted that the immunity is an ongoing problem and seasonal flu jabs are essential. I believe that, if the blood counts are good then the response to new infection should be pretty good but there may be an issue in that new infections are often modifications of old ones so, we who still have all our acquired immunity will fare better than those who have had an SCT. Pauline has had two 2 3 week severe cold and cough bouts recently both needing 2 rounds of antibiotics and leaving her pretty well washed out. Prior to this we both hardly ever had colds an virtually never had flu so I think this must relate to her Myeloma and SCT. I think the simple answer is that we all have to take much more care to avoid catching anything or passing it on. On the issue of preventative measures I heard an interesting comment recently. It appears that cold and flu viruses love moisture and it is the tendency for noses to run in cold weather that helps spread infection so the suggestion to use Vic or other nasal sprays may well be worth taking up. I think that the other important point is to avoid becoming blase about things and don't be afraid of getting medical attention early. Our experience is that GPs will not condemn you for being a bit over anxious. Colds and flu are caused by viruses and the best way to fight these is to develop a strong constitution and don't be afraid of getting him to bed with paracetamol and a hot water bottle, but bacterial infections often follow on from viruses and this is where you need to step in quickly with the antibiotics. Best wishes for the future. Ron.

[brochoParticipant]

Hi Amelie great news about Johns remission ,long may it last The only advice I can add regarding infections is to have the pneumonia vaccine which lasts ten years .I had this vaccine 2 years ago and although I did have pneumonia last year it is likely to have been more severe if I hadnt been vaccinated love Bridget x

[roncantrillParticipant]

Hi Bridget,
We asked about the pneumonia jab after Pauline's SCT and were surprised to be told that it could be dangerous to have it for a second time. Pauline had it about 3 months before her SCT and they were concerned that it may be partially still effective, even after the transplant. Nothing is straightforward with this damned disease is it?.
I am sorry that to read that you've been having a tough time over Christmas and I tried to back track to pick up the full story but I find that much more of a problem on this new site. I have to confess to preferring the old one. Also, I've had my hands a bit full with Pauline who seems to be on the road to recovery at last. Nevertheless, I hope that you are still improving after your antibiotics and that the other treatments start to produce better results. Best wishes, Ron.

[brochoParticipant]

Hi Ron thats really interesting and I wonder if others have been warned of possible risk , it was never mentioned to me.Sorry to hear Pauline has been having a hard time and I hope she continues to feel better so you can both get back to your golf when the weather improves . I feel better than I did but I must admit the pain in my back is unbearable now and I cant wait to have the radiotherapy . I am not sure if surgery on my spine is still an option , hopefully I will find out more at clinic on the 20th At some point I will be starting Revlimid , mind you having read how many people feel tired on it that should be interesting as I am the queen of power napping as it is !!Please give Pauline my best wishes and heres to a healthy happy new year for us all love Bridget x

[AmelieParticipant]

Thanks everyone for really great help and advice! Wouldn't know what to do without you!
Love
Amelie

[roncantrillParticipant]

Hi Bridget, I dropped onto a report somewhere recently that If Revlimid is supplemented with about 100mg Aspirin daily it can add as much as 25 – 50% to the benefit timespan. I just can't remember where! More to the point of Amelie's topic, I also found a report on the results of a test which showed that paracetamol can impede the body's response to infection by lowering temperature while the normal response is to increase temperature as an effective way of fighting infection. Personally, I have no faith at all in paracetamol and always go for aspirin. Unfortunately, Pauline was told to avoid aspirin when she was diagnosed with Myeloma but we don't know why. Do you or anyone else have any thoughts on this?
Ron.

[AmelieParticipant]

Hmm, I was too late – it seems that John has got the flu now. Hope it won't be too difficult 🙁

[EvaParticipant]

Ron,
You'd have to ask the original physician.

Aspirin has been in the news a lot. There are suggestions that it might lower the incidence of certain cancers. You could google that.

If you want a speculative comment about why someone might be told to avoid aspirin: well, it might be linked to the blood thinning properties of aspirin. This could matter in two ways. If someone is low on platelets or clotting capabilities in the blood then they might bruise easily or get blood noses. Too much aspirin might exacerbate that. Another reason could be that with some induction drugs, patients might be at risk of blood clots. When I was on Thal I was also on Warfarin, a blood thinning agent. I had to go to the docs every few days to test how thick or thin my blood was, to ensure I wouldn't get a clot. My warfarin dose was then adjusted carefully each time. This procedure requires as much stability as possible, so I guess if I'd been popping huge numbers of aspirin then the viscosity of my blood would have gone up and down a lot. In some rare cases, too much aspirin can cause bleeding internally.

Overall, for healthy people though, aspirin is being linked to all sorts of potentials including stroke prevention. It's now possible to buy aspirin in 'tiny' doses of 30g for those people who wish to take it daily. I think that anyone with myeloma shouldn't take ANY drug without checking with their physician because our blood chemistry is so complex and could change so fast as a result of treatment.
Best,
Eva

[roncantrillParticipant]

Hi Eva, Agreed on all points. I offered the bits and pieces as discussion points. As I said, we have always trusted aspirin and were aware of its problems with warfarin and clexaine etc. but wondered if there were any problems with using while having nothing more than the bone strengthening drugs. It is encouraging to find that aspirin is being recognised as useful in a wide range of ailments, even as an effective treatment for Migraine. Certainly, I have always found that 3 aspirin and an early night fixes most things whereas paracetamol concoctions merely prolong the suffering. Perhaps it's a lot to do with having faith. 🙂
Ron.

[roncantrillParticipant]

Time to start mothering….
Hope it's not too bad.
Ron.

[Author]

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