… sorry cut myself off. She has been like this for 7.5 years. We were both Stage III disease, I am lambda light chain 6800 at diagnosis and she is IgG kappa. She has 1 year of Thalidomide as consolidation after sct. My last treatment was sct, no maintenance. We do what we believe helps us I suppose. I’m happy with my decisions. Sue
Hi Rich
Yes I still take these medications each day, along with supplements curcumin being in an 8g dose. Whatever supplement I take I have done a pubmed search + myeloma to get the latest publications. June will be my 7th year in remission after sct. Is the drugs and/or change in lifestyle that has kept me in remission, I don’t know or would I have remained in remission without changes in diet and the COC protocol and supplements, again I don’t know, but I believe they help and that’s the main. As we know solid tumours behave very differently to liquid tumours. I have read that COC have good success rates with solid tumours. A friend of mine never reached mad -ve, did not change her lifestyle and remains with low level disease not requiring treatment as yet. She has been this
Hi
I had my sct in 2016 and the first 2 years was cold after cold which always developed into a chest infection, always requiring antibiotics and sometimes requiring steroids as well. As we had to wear masks during Covid, I found I had no infections, however since removing masks (recently) I have had one infection after another. My Ig’s are normal. I think we just have to be careful. For me I had 50 years of immunity which was wiped out after sct, the only remaining immunity I had was strangely to tetanus. It takes time to build back up again, I believe. Sue
Hi
A bit to late to respond, but I had 4 BMATs within 10 months and for each and every one I was sedated. I told the dr no way, no how are you doing this procedure without sedation. I used to work in Haematology as a secretary and would often hear the patients screaming in clinic when they had their BMAT. To this day I would refuse unless they gave me sedation. Sue
Hi Derek
Didn’t type statistic correct but clearly you understood. I was given 3-5 years. Just FYI I was 51 at diagnosis, although there were no statics at that time for a 51 year old, they began at 60! Being positive will serve you well. We cannot change what tomorrow may bring but we can choose how to deal with it. Enjoy 1 day at a time. Going through STC is harsh (at least it was for me, it was 50/50 whether I would survive). However some people breeze through it, as I say your biology is unique to you. I would ask that you take a look at Margaret’s Corner MM blog she has so much information backed up by British journal publications. It’s educated me. Good luck in your journey. Sue
Dear Derek
I was diagnosed with Lambda light chain myeloma in 2016 after suffering severe backache, spasms, rib pain, nausea, extreme thirst and confusion to some extent. I had collapse of L3, (L4/5 were crumbling). I had a creatinine of 245 and kidneys were barely functioning. Upon admission I had aggressive hydration for 5 days, which eventually recovered my kidney function. Lambda light chain disease has a bad prognosis as it blocks the filtration in the kidneys. They are bigger than kappa light chains, which seem to find their filter through the kidneys. I had 90% blasts in my bone marrow. I had vertibroplasty to L3/4/5 and was started on the Myeloma XI trial, I had CDT then SCT. I consider myself extremely fortunate to have gained MRD -be after STC. Eventually after several months my platelets were at a level whereby I could be randomised for Revlimid maintenance. I started Revlimid, but unfortunately my liver did not tolerate the drug and it was stopped. That was 6 years ago and I have been off treatment (barring 2 weeks) since July 2016. I remain in complete remission with 90% kidney function. I changed my diet, omitting sugar, perused a plant based diet and take 8g of curcumin every day. I also consulted with Care Oncology in Harley Street and commenced Metformin, Mebendazole and Doxycycline (pulsed). We have all got to do what we believe is best for us, this is me trying to take back some control. What I would say is do a google search on any of the above drugs and supplements and see the pubmed articles eg curcumin + myeloma + pubmed etc. Curcumin blocks a lot of myeloma’s pathways, along with many others. This is just what I believe has helped me remain in remission. Everyone’s journey is their own we all have individual biochemistry unique to us, so please do not get bogged down with stastics. You are a static of 1.
Sue
Hi Mark
I was diagnosed February 2016 aged 51 after been ill on and off with back pain for 2 years or so. At diagnosis I was unable to walk, had stage 2 acute kidney injury, collapsed L5 with L3/4 collapsing and rib fractures. I felt bad then, but felt much worse once on therapy CTD. After 4 cycles I had SCT that was July 2016 and that was my last treatment to date (touch wood). I have resumed a normal life. Good luck in your journey.
Sue
Hello Dave
Everyone feels lost and alone when they are diagnosed, everything changes overnight and you normal as you knew it will change for a new normal. It’s a tough road, but is manageable. I was diagnosed stage 3, with a beta 2 microgloblin of 9.7, stage 2 kidney failure, collapse of L2/3/4 and 90% blast cells in my bone marrow. I have Lambda light chain disease. No paraprotein. I had an autologous SCT 5 years ago, achieved MRD negative and touch wood am still ok. I was off work for a full year. My quality of life is excellent. I travelled a lot before Covid. The hardest battle is in your head. Remain positive. I remember someone telling me this was a blip and things would get better. I was 51 when I was diagnosed. Good luck.
Hello Sach
I have been taking many supplements since approximately 2 years post SCT. I wrote a comment about it back in 2018, gaining insight from Margaret’s Corner and the book How to Starve Cancer. I now follow the Myeloma metro map. I firmly believe they are helping me along with a diet of fruit, vegetables and salad, no processed foods, meat and only a little dairy. I take 8g of Curcumin a day, as well as Quercetin, ashwagandha, boswellia, MCP, R-Alpha linoeic Acid, Melatonin, several MRL mushroom extracts, Berberine, omega 2, D3, Vitamin K, astragalus, wormwood, inasol, IP6, black seed extract, cCoQ10, loratadine, liposomal vitamin C, as well as several cups of green tea a day. If you type in a google search the name of the supplement + Myeloma + pubmed you will see all the articles written about them and their anti Myeloma affects. I am also on the COC protocol of Metformin, Atorvastatin, Mebendazole and Doxycycline. I am 100% committed to this. Do the research. Good luck.
Hi
After my SCT (2016) I was not on any medication. Once discharged after 24 days I had daily platelet infusions for 3 weeks. I was sick several times a day and very weak it took at least 4 months for me to regain some strength. I had a rocky road, with complications whilst having SCT suffering a brain haemorrhage and subsequently losing the sight in my left eye. However, after 4 months I went from strength to strength and 4 years later I am doing ok, still in remission without maintenance (fingers crossed). My quality of life has been excellent and I am very thankful. SCT is harsh. Be kind to yourself. X PS I was on the Myeloma XI trial and was randomised for Revlamid. I took 2 weeks but had to cease because it affected my liver. For me it was meant to be, but I am glad to hear that you o longer have to be randomised after SCT.
Hello Clare
It’s a long time since your post, but I just wanted to add at diagnosis I had collapse of L3/4/5, was in excruciating pain, couldn’t stand, walk, or get up from a seated position, has stage 2 kidney acute kidney injury, a beta 2 microglobulin of 9.7 and Lambda free light chains of nearly 7000. I was diagnosed with stage III Myeloma. After 4 months of CTD I had an autologous SCT (June 2016) and have been in remission ever since without maintenance. I had vertebroplasty to my spine, the pain diminished after 3-4 months, my back felt strong again. My quality of life has been excellent and long may it continue. I do have my dark days, especially when I have my bloods done, but I thank God for every day he gives me. I hope the same for your husband. Everyone’s journey is unique. God bless.
Hi
I had my first (Pfizer) vaccine a week ago. I had a sore arm only for 2 days. I must confess I would rather have had the Oxford vaccine, but beggars can’t be choosers. I discussed with consultant prior to immunisation and was advised I must have it. Apparently there is research going on into how Myeloma patients react to the vaccine. I was advised that as I am over 4 years out after SCT without any treatment,my response should be ok, but this has yet to be confirmed. Hopefully, we all will have an immune response. Take care all and stay safe. Sue
Hi Linda
Take a look at Margaret’s Corner (living with Myeloma). She has a wealth of knowledge you can tap into. I take 8g a day Drs Best C3 complex with bioprine. Hope this helps.
Hi Clairelou
I can totally understand the way you are feeling. I was diagnosed at 51 and admitted as an emergency with stage 2 kidney failure, anaemia, hypercalcaemia and collapse of L3/4/5. The doctors took no notice when I complained of worsening back pain and they just prescribed a stronger painkiller. The doctors also failed to act on a creatinine of 230. I paid privately for an mri scan, which confirmed Myeloma. I had 80% plasma cells in my bone marrow. I had 4 months of CTD (Myeloma XI trial) followed by stem cell transplant at month 5. For me it was a rough ride, but for many it’s doable. For certain with a diagnosis of Myeloma you will develop a new normal, but you will adapt because you have to. I used to mark off every treatment or test which got me nearer to the goal of remission. I was lucky I achieved MRD negative status. If I were to offer any advice do as much research as you can, arm yourself with information and get yourself a Myeloma specialist. It’s all scary, it never really goes away, but you will get better at controlling your feelings and thoughts. I cried when I wanted and sometimes screamed – it’s a kind of grieving process for the life as you know it. Since my transplant I have not been on treatment and have travelled to Australia, Singapore, Italy several times a year. I work full time from home for a consultant and take time to relax. Look after yourself. Treat yourself well. Face it head on. You have your family supporting you. Good luck. Sue
Dear RebeccaR
I had to contact my GP because I had not received the shielding letter. You have a diagnosis of Myeloma, therefore you should be shielded. NHS England are quite firm on that. I received the letter 3-4 days after contacting my GP and today I was contacted by NHS England to ensure I had adequate support whilst being shielded. Hope this helps.
