[HelenParticipant]

Hi Andy
I am back to work! 4 weeks now, gradual return and I’m tired but ok really. The shingles rash site is uncomfortable but getting less.
Love Helen

[HelenParticipant]

Hi David
Well this is how I understand it …. A normal immunoglobulin ( A,D,E,G or M ) is usually drawn as a Y shape, made from 2 heavy chains with 2 light chains bound to it on either side, kappa and lambda.
Light chains are not fixed very firmly so it’s not uncommon for the normal population to have low levels of flc in their blood as they can fall off and float free… Hence free light chains. As long as the ratio of kappa (normal range 3-19)to lambda (NR 5-26)stays correct roughly 1 kappa to 1.5 lambda, then there isn’t a problem. The problem starts when the levels begin to rise of 1 flc to the other. You can have high flc in other inflammatory conditions like arthritis etc, which is why we have bone marrow biopsies as well to double check the level of the disease. Some people can have low levels to upwards of 30-50,000
So using me as an example. my levels of flc before the Velcade in May were 7 kappa and 155 lambda with bone marrow involvement of around 20% showing that the disease had returned … last month they were ..undetectable kappa and 8 lambda… Still an abnormal ratio but at very low levels again.
So get your kappa and lambda numbers – work out the ratio and bobs your uncle.. Hope this makes sense
Love Helen

[HelenParticipant]

Hi Andy
Good results there, hope it continues to do the trick. Enjoy the beer, I still can’t drink alcohol, my taste buds must have been totally nuked!
Love Helen

[HelenParticipant]

Well done David! Hope it stays like that for a very long time
Love Helen

[HelenParticipant]

I’d expect to get a mud pack too
Love Helen

[HelenParticipant]

Dear Sal
I’ve had mm for 3 years now, 56 when diagnosed. Given induction chemo, had SCT, relapse and next course of chemo. I’ve taken a lot of sick leave and am now back at work. My husband hasn’t given up his work either. I don’t take him to the hospital,( he’s a bit squeamish) and I found having him clattering about the house after my SCT was not restful so sent him back to work after 3 days. Since then we try to live as normally as possible and I try not to make him worry. I’ve cooked most days since diagnosis and kept doing as much as possible. We have saved our holidays so that we can go away…. As much as we can.
I’d keep as many options open as possible, tell everyone who needs to know what is going on.
The main thing this disease does is to steal your ability to plan… So you have to live in the now.
Love Helen

[HelenParticipant]

Dear David
I do hope you are going to point this out to the consultant you saw? I was on aspirin all the time I was on Revlimid with the injections when in hospital or flying long haul as DVT is A KNOWN complication of Revlimid. I hope it settles down and is trouble free soon. But you will need the injections all the time as you are high risk for DVT now.
Love Helen

[HelenParticipant]

As Pete and Michelle have so eloquently put it, I can only agree with them. Where are you being so badly treated? Myeloma is treated with a very small armoury of drugs which are available, and show they work for some ..not all …for some time. I believe that the great majority of us get the best of what is available at this moment in time. Do remember that myeloma as yet is incurable and only treatable…. The treatments available now are proven to have some value but none of them are given willy nilly as they carry such awful side effects and we often develop early resistance.
Helen

[HelenParticipant]

Dear Mandy
Devastating news for you, I took a long time to get my head round relapse and found the next toxic round of treatment difficult. I’m now in remission again and feeling more positive at last. The anger and disappointment that we feel when this disease comes back is very hard to bear. You are probably right to seek a second opinion and I hope a new treatment plan works quickly.
Helen

[HelenParticipant]

Yep that’s 92.2 x…… I can’t work that out! It’s a big number! 450,000,000 or there abouts. I found the whole SCT experience quite fascinating in a funny way! I just wish I’d not been on the receiving end! It is an amazing procedure.. Terribly clever how the whole process works. I’ve not been asleep before 1 most nights since diagnosis… I think the steroids altered my body clock! Either that or else I just have to pack more in and not waste time sleeping.
Helen

[HelenParticipant]

Dear Carol
Hope it’s going well, and I don’t know if you realise the magnitude of your stem cell collection…..but that is 5 million per kilo of your body weight that they will give you back! So if you weigh 60 kilo you will get 300,000,000 stem cells back! Mind boggling eh! Good luck with it.
Helen

[HelenParticipant]

Dear San
I’m so sorry to read about your mums death today. I know you will miss her lots and lots. She sounded like a real lady! And I hope that Christmas and new year went peacefully for you all.
Much love
Helen

[HelenParticipant]

Dear David
It’s good to hear you are still getting out and about… Even if it’s only in the UK. I’m going to tackle the insurance company tomorrow to see how I’m fixed since relapse/remission……. I have my fingers firmly crossed and will not be a happy bunny if they say ‘no’
Love Helen

[HelenParticipant]

Hi again
I also can’t edit anything so I can’t inform you that it’s an iPad I’m using, in case you’d forgotten!;)
Helen

[HelenParticipant]

Hi Stuart
I’m still getting ‘participant’ ….. How can you delete the site when there is no ctrl or f5?
Helen

[Author]

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