susantr

  • susantr replied to the topic London Marathon in the forum General 3 years, 4 months ago

    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

  • 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.

  • 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…[Read more]

  • susantr replied to the topic Curcumin in the forum Treatment 3 years, 8 months ago

    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

  • susantr replied to the topic Curcumin in the forum Treatment 3 years, 8 months ago

    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

  • 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…[Read more]

  • 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

  • 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…[Read more]

  • Hi everyone

    Well after much deliberation I decided to take Revlimid maintenance. Now 2 weeks after taking it I was reviewed yesterday for bloods etc. Today I received a call from the hospital and I have been asked to stop taking it as my ALT has risen to 146. Has anyone else experienced this and how did you proceed? Does this mean that when I do…[Read more]

  • Hi Avril

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

    Sue

  • 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…[Read more]

  • 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…[Read more]

  • susantr replied to the topic Revlimid dilemma in the forum General 4 years, 3 months ago

    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…[Read more]

  • susantr replied to the topic Revlimid dilemma in the forum General 4 years, 3 months ago

    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

  • susantr started the topic Revlimid dilemma in the forum General 4 years, 3 months ago

    Hi

    I wonder if anyone can help. I have been randomised to commence Revlimid maintenance as part of the Myeloma XI trial. I am 10 months post SCT achieving MRD-ve status on BM and PET/CT. I know Revlimid increases PFS but also comes with a host of side effects including secondary cancers. I have enjoyed 10 lovely months being drug free. My dilemma…[Read more]

  • susantr replied to the topic Zometa in the forum General 4 years, 3 months ago

    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

  • Hello Dawn

    I was diagnosed in February 2016 with collapse of L3/4/5 and acute kidney injury. I was admitted as an emergency and commenced on aggressive hydration to flush my kidneys. My lambda light chains were 6900. I commenced on CTD. I had vertibroplasty a week after admission. I had 4 cycles of CTD. I slept really well, think it was the…[Read more]

  • susantr replied to the topic Light chain myeloma in the forum General 4 years, 4 months ago

    Dear Morganchick

    There are two types of light chain myeloma – kappa and lambda. Ask your consultant which one you have. Also, take note of the kappa/lambda ratio (this is important) as when this goes outside of the normal range this signifies active myeloma. Sometimes both light chains can be elevated, but the ratio remains normal, this can be…[Read more]

  • susantr replied to the topic Hello from the states in the forum Newcomers 4 years, 4 months ago

    Dear dbrr

    NICE is the institute in the UK which gives approval for drugs to be used on the NHS, equally they also refuse drugs (usually due to cost). The only way in the UK to get drugs which have not been approved for NHS treatment is to go on a clinical trial. The USA and Europe seem to have slightly more ammunition to fight mm than the UK at…[Read more]

  • susantr replied to the topic Seven Weeks Later in the forum Newcomers 4 years, 4 months ago

    Hi Sabs

    I have read of patients getting myeloma in their 20’s in an American forum. It would appear that patients are being diagnosed younger and younger as 15-20 years ago this was considered an older patients disease (65-75) , and I suspect that that is the reason for OS at that time being so poor.  Of course today there are the novel agents…[Read more]

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