Hi Susie
No one has mentioned that it could have anything to do with Ixazomib. I really don’t think they could make that judgement after just one cycle of treatment involving it.
Will keep you in touch. Should know more in a few more weeks.
Helen
Hi All
I have had one cycle of Lenalidomide and Dex followed by a second cycle of Len, Dex and Ixazomib. This was prescribed after failure of SCT earlier in the year. Unfortunately I have encountered a few problems over the last few weeks, probably nothing to do with the new drugs but more to do with bad luck! I had a UTI (July 22nd) ten days into second cycle followed a week later by a cold and high temps. My high temps continued to spike regularly reaching 38 plus, despite a course of antibiotics. . We were due to leave for a much needed holiday in cornwall on the 10thAugust. Due to yet another high temp I visited our helpline clinic on the day before we were due to leave. It was decided that although 24/48 hours of IV antibiotics would normally be given I should go and enjoy a break with oral antibiotics and delay my third cycle of treatment as Ixazomib should not be given within 14 days of receiving anti biotics. So we travelled to Cornwall on the Wednesday and by Thursday morning at9am I was admitted to the Royal Cornwall Hospital, Truro! After several days of a variety of broad spectrum antibiotics and a thorough range of tests, scans etc to identify source of infections none were found. In consultation with my home consultant it was decided I should try a course of Dex 10mg twice a day. My fevers stopped immediately and have been able to join my family for two days of holiday before we return home on Friday when I will arrange to see my consultant as we pass the hospital on the way home. Based on the 14day following antibiotics rule I can’t see me being able to start cycle 3 until end of August. I am then due to visit Dr Ramasamy in Oxford on Sept 9th to assess how things are going.
Susie, sorry for such a long story but haven’t had enough experience of Ixazomib to answer your question. I will though post again once I have managed to complete another one or two cycles of treatment.
Keeping positive and hope to look back on this experience as a blip!
Best wishes to you all
Helen
Hi Peter, Sorry to hear about your stomach problems. I hope they manage to help you with this.
Let’s hope your LC take their time before reaching the point at which you need further treatment.
Like 007 I would be very interested to hear from anyone who has been/is being treated with Ixazomib, Lenalidomide and Dex.
Best wishes
Helen
Hi, I had my SCT in Jan but unfortunately it did not work for me. My myeloma is measured by lambda light chains. By June they were up to 1310. It was decided that I needed further treatment and so I was referred to Dr Ramasamy in Oxford by my Gloucester team. I started Lenalidomide and Dex immediately while the paperwork to access Ixazomib was processed. After one cycle of Lenalidomide and Dex my light chains dropped from 1310 to 153; a fantastic result. I am now on my second cycle of treatment and Ixazomib has now been included. As yet, I have had very few side effects other than feeling quite emotional and the usual fatigue. I hope all goes well for you. Helen
Hi Peter and all other contributors,
I think I described in an earlier post that once I stopped my course of VTD my light chains began to increase. Consequently, my SCT has now been postponed until the new year and in the meantime I am having two cycles of ESHAP. I was admitted to hospital on Monday this week to have a Groshong Line fitted to make it easier to receive the treatment. I started on Tuesday having various drips, three at a time on occasions and two of them last twenty four hours! I will finish around midnight on Saturday so hope to be allowed home Sunday.
All this extra chemo will mean I will go into the SCT with the lowest readings possible hopefully resulting in the best outcome. Like you Peter, it is greatly encouraging to read of the lengthy plateau/remissions achieved nowadays. I was also pleased to read the fantastic response you have had to treatment bring your light chains down so low!
Best wishes to you all
Helen
Hi Toby
Thank you for your message. I still go into hospital on Monday as ESHAP is a five day inpatient treatment. I will have one week in hospital followed by two weeks at home x2. The transplant should now be in the new year.
I am glad your harvest went well and that you will be able to enjoy Christmas with your family before the transplant. Let’s hope your energy levels improve soon.
best wishes
Helen
Hi Peter
I totally agree with you and am very aware that visiting certain websites can be dangerous! MyelomaUK is the one site I trust, the rest I may read but always return to this site for honest and accurate representation of the facts. At the moment my mood changes daily. I swing between accepting my situation, having utmost confidence in those looking after me and believing that I will be the patient who defies all statistics to obsessively searching for unattainable answers to impossible questions. I am finding this period of time (following five months of VDT and Before HDT/SCT, due on 16th Nov) the most testing so far. I feel as if I am in limbo. I didn’t think I would ever say it but I miss the regular hospital appointments!
Jill, as Peter said, thank you for your detailed reply. My 3,500 light chains now feel small in comparison! It also shows that the number of light chains don’t necessarily dictate the percentage of myeloma cells as our ratios between the two are so different. Did your mum have follow up bone marrow biopsies or just the one at diagnosis? Your mum’s 8years has given me confidence that it will be possible to plateau for a period of time and that there are many drug combinations that can be used.
best wishes to you both
Helen
Hi Jill
Thank you for sharing your mums results. Hasn’t she done well!
It proves yet again that we are all different. My head spins when I try to work out what published data and fellow patient experiences can tell me about my own myeloma. I’m quickly reaching the stage where I feel I should stop looking for answers…… (That’s if I can resist the temptation to google and read just one more website, one more publication, one more blog, one more discussion forum!)
Sending both you and your mum my very best wishes
Helen
Hi Peter,
The slide that you refer to was used purely to demonstrate the improvement in survival rates over a number of years. This is very old data and I believe further improvements have been and continue to be made. Although it is really tempting to try to predict our future there are no statistics out there that refer to our individual circumstances. I am trying hard to take all statistics out there with a pinch of salt and concentrate on my individual readings/results and to trust in my consultants understanding of them.
Also, from my understanding, these statistics include all myeloma patients who have died, irregardless of cause of death. Therefore as the median age at diagnosis is around 70 years old they include a percentage of people who have died from non related myeloma conditions.
I just reread your first posting on this page. I think your appointment must be this week? I hope it all goes well for you.
best wishes
Helen
Hi Peter
Since my last post I have attended the MyelomaUK Info day at Birmingham. The consultants who spoke gave the message as described by Dave and Jill. If you are interested their PowerPoint presentations from that day can be accessed by selecting ‘how we can help’ > ‘patient and family info days’ > ‘past info days’ > then select West Mids Info day 17th Oct and then at the bottom of that page you will find the presentations available as a download. Most slides may not make much sense without the speaker! but there is a slide on definitions in the Initial Treatment presentation. It was an excellent day and I would thoroughly recommend attending.
Jill
I believe I am unlikely to achieve remission after my stem cell transplant but hope to plateau like your mum! Do you mind me asking what her percentage of myeloma cells she had in her bone marrow and the number of light chains (if this is relevant to your mum)? Please do not post this info if you don’t want to I am just interested to know how high these numbers can be and for it to be possible to plateau for a period of time.
Dave – great news on your results. Good luck with the transplant.
best wishes
Helen
Hi Peter
You’re right! I should be pleased my lambda light chains are down, it just seems such a long way off normal though!
In answer to your question. I had my first BMB in April when I was first diagnosed and the second one on September 6th at the end of my VTD treatment. I guess this was so they could measure my response to the induction treatment. Both biopsies were taken from the Iliac Crest (I had to google this to get the correct terminology!) the pelvis.
I have also heard the term plateauing. I think the courses of treatment will only achieve so much. We will all therefore have different numbers/ratios etc at the end of our treatments (depending on where we started) and plateau at different readings of light chains/paraproteins/abnormal plasma etc. so we shouldn’t compare. I have repeatedly been told that it is my individual response that is the most important statistic NOT the ‘numbers’ I achieve.
best wishes
Helen
Hi Peter
I was also diagnosed in April this year with lambda light chains myeloma. Your understanding of kappa/lambda light chains and the ratio is exactly right as I understand it. I also had velcade thalidomide and dex as my treatment for 4 months (I also had one month on just velcade and dex at the start and thalidomide was introduced when my kidneys had improved).
I was told that a reduction of 90% of the lambda light chains would be a very good response but the word remission was not used. I did achieve a reduction of over 90% going from 3,500 to 291 lambda light chains over the five months of treatment. Bone marrow biopsies showed my abnormal stem cells had dropped from 55% to 15%. A stem cell transplant is now planned to try and improve this further.
I had enough stem cells harvested for one stem cell transplant on Monday and Tuesday of this week. I am due to go into hospital on the 16th November for high dose chemo and transplant. From what I understand, a bone marrow biopsy will then be performed (100days after the transplant) and then I will be told what level of response I have achieved. If you look in the MyelomaUK publications list there is a booklet on HDT and Autologous SCT. On page 38 there is a chart that outlines different responses to treatment ‘how do I know if my treatment has worked?’
From what I understand remission is the period of time that follows treatment and provides a period of time where you are treatment free. I don’t believe it is possible to accurately predict how long each of us will be in remission.
I hope this answers your question. I know there are many far more experienced people who will read this and hopefully they will correct me if I have got anything wrong!
I wish you all the best
Helen
Dear Dusk
THANK YOU for your clear explanation. That all makes sense!
I am waiting for an appointment to come through to meet the doctor at the hospital where I will be having the transplant. I just want to get on with it now!
best wishes
Helen
Hi all
Thank you for your messages.
The more I read the more confused I become! I thought the blood results (showing number of lambda light chains in my case) were an indicator of the activity of the disease but the BMB provided a more accurate picture of the amount of cancer. I was told I had 55% abnormal plasma cells when diagnosed and they are hoping that my BMB last week should show it has reduced to below 10% as a result of the VTD induction treatment. It is then hoped that after the SCT it may reduce to 1 or 2%.
I’m not sure I will ever understand it all! I now have another list of questions to ask at my next consultant appointment!
best wishes to you all
Helen
Hi
Does anyone else find having a bone marrow biopsy traumatic? Or am I just a coward?! I asked for a sedative this time but felt no sedative effects at all! The doctor carrying out the procedure said that some people felt nothing at all – I can hardly believe that as I find it so painful!! It’s less about bone pain but I seem to get nerve pain.
Anyway I won’t be due another til next year!
Charlie – Hope you enjoyed your friends 40th birthday and that your preparations for harvest/transplant are going to plan.
Helen
