[susantrParticipant]

Hello Boston99

The SEP will show if you have an elevated m-spike, paraprotein or monoclonal protein. A normal m-spike is zero. Anything over zero is abnormal, however this doesn’t necessarily mean that you have Myeloma. Some people have a very small paraprotein, which is totally benign and this is termed MGUS – monoclonal gammopathy of undetermined significance. People can have this for many many years without any problem and it may never progress. However, this can also progress to smouldering Myeloma, which can then progress to Myeloma. It may be that you have a very small paraprotein which needs monitoring 1-2 times a year. No treatment is required for MGUS. Hope this helps. Try not to worry.

[susantrParticipant]

Hi

I have just completed a 21 mile walk in Singapore for Myeloma UK. It took me 6.58 hours. My daughter joined me. We managed to raise £350, well every little helps 😊. I was diagnosed 2016 and was 51 at the time, stage III with acute kidney injury. I’m glad I have been able to help Myeloma UK.

Susan

[susantrParticipant]

Hi

My 100 Day bone marrow showed that I was MRD -be, so I couldn’t have asked for a better result. That was in October 2016, so I hope and pray it will continue for a very very very long time.

[susantrParticipant]

Hi

I had a particularly torrid time when I had my sct. I was still vomiting after discharge (24 days) up until 8 weeks after transplant. When I left hospital I was too weak to walk and was wheeled around for 2 weeks. Unfortunately for me whilst I was vomited I burst blood vessels in my eyes and had a brain haemorrhage. As a result I have lost vision in one of my eyes. It’s a difficult process to go through, but hopefully your mum achieves a good response to treatment.

[susantrParticipant]

Hi Susie

I have light chain myeloma (lambda) so never had a paraprotein other than after transplant when I developed oligoclonal banding. Regarding dosage rightly or wrongly I increased my dosage over several months and now take 2.4g a day. I also take apricot kernels. Time will tell. After transplant I was MRD negative so I’m praying I still am.

Sue

[susantrParticipant]

Hi

I take Turmeric and have done since 4 months post transplant. I don’t know if it helps or not, but there are some interesting articles stating it has some anti-Myeloma effects. From an anti-inflammatory point of view it really helped when I had frozen shoulders. I think anything is worth  try. Good luck.

Sue

[susantrParticipant]

Hi Ian

I have always been told it’s not about kappa/lambda values but the ratio. You can have normal kappa/lambda but if the ratio is abnormal it would signify disease activity. Also, you can have increased kappa/lambda but if the ratio is normal the increased values could be down to ckd or inflammation.  I have lambda light chain disease, so never had a paraprotein, however 5 months after sct I developed a paraprotein of 6.6, + increased kappa/lambda, but normal ratio and was told that I had relapsed.  5 weeks prior to that I had been told I was Mrd negative, so I was devastated to say the least.  To cut a long story short I challenged this, but all the time the paraprotein (several IgG kappa, IgM kappaand IgG lambda – if memory serves me correctly) increased, the highest level being 9.7. However further bm showed mrd negative and so did PET/CT and then I was told I had oligoclonal banding, which I have to this day. Sometimes it increases, sometimes decreases.

Also, I have read some people can live with fairly high paraproteins without bone damage, but others can have low paraproteins but with bone damage. So, indeed this is unfortunately an individual disease. I probably have not been very helpful, but keep positive and I hope all goes well for you.

Susan

[susantrParticipant]

Hi

I was on the Myeloma XI trial and was randomised to take Revlimid. However, after taking it for only 2 weeks my ALT raised to 146, therefore I was asked to stop taking it.

Sue

[susantrParticipant]

Hi Peter

Thank you for your response. You really went through it. So often I read that it’s not the myeloma that ultimately takes ones life, but it’s as consequence of the treatments we take to keep the myeloma at bay. We are all caught between a rock and a hard place. I was in a dilemma whether to take the Revlimid or not, but after my consultant advised it does prolong overall survival I chose to take it, but all the while being at odds with my own thoughts. Now I have been told I have to stop that’s a whole different curve ball. This means that not only has Revlimid been taken out of the cabinet, most likely so has Pomilidomide, I hadn’t really thought that I would have to stop the drugs because of their effects, only that I would stop them if it impacted on my quality of life. I am still early days (18 months) into the disease, so still uncertain how the myeloma is going to behave. Im glad your results improved, but it must have been a scary time.

Sue

[susantrParticipant]

Hi Avril

I wish you a very speedy recovery from your SCT and hope it’s as successful as the first one.

Sue

[susantrParticipant]

Hi Avril

Wow to chew ice cubes for 6 hours after Melphalan will take some doing! When I had my SCT I wasn’t offered any Paliferm, had I have known that medication existed to help alleviate the mucositis I would have asked for it. You live and learn. Do you mind me asking if you took maintenance therapy after your SCT or were you drug free for the 6 wonderful years? I wish you the very best for your upcoming SCT. I hope you get another long remission.

Sue

[susantrParticipant]

Hi Avril

I too had ice cubes commencing 30 minutes prior to the Melphalan, whilst receiving the Melphalan and 30 minutes afterwards. I didn’t have any mouth sores, but my oesophagus still suffered badly. I can’t stomach ice cubes to this day. I wish you well with your SCT and congratulations achieving 6 years remission from your 1st SCT. I hope I am as lucky as you.

Kind regards

Sue

[susantrParticipant]

Hi Helen,

Do you mind me asking after transplant were you in CR? I have thought about this long and hard and I am not going to take the Revlimid. My thought process is this. I was Mrd-ve in both October and December 2016 by BMAT. PET/CT confirmed no myelomatous activity in January. Stats (I believe I am a statistic of one) show a median PFS of 28 months on this result. So that would be a further 17 months which I would be taking a drug when not needed. The Revlimid increases PFS but not OS so I think I should take this when I relapse. I don’t want to take a drug out of the arsenal until it is needed plus who knows when I will get the chance to be drug free again? It we only had a crystal ball decisions would be so much easier. Who knows if I am making a wrong/right decision. Only time will tell. Thank you very much for reply. Very much appreciated.

ps I go away soon to Singapore for a whole month, so I agree we ought to do as much as we can when we feel up to it.

Sue x

[susantrParticipant]

Dear Annette and Susie

Thankyou for your informative responses. It’s always nice to hear other patients experiences. They have certainly given me plenty to think about. Thank you once again.

Sue

[susantrParticipant]

Hi Lynne

I have had around 12 zometa infusions and haven’t had any side effects ever.  I have been warned about oral health and the need for regular dental appointments, but never been told about mouth ulcers/toothache – thank you for the additional information.

Sue

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