Hi. I was diagnosed with Smouldering Myeloma in 2014, one year after I had retired at the age of 61. Together with my wife, we did lots of research on how to keep the cancer stable for as long as possible. I have never smoked, avoided alcohol, and meat for at least 20 years. I do however, eat lots of fish so am really a pescataria rather than vegetarian. I excercised – albeit quite lightly regularly and took several vitamins and which included Curcumin. My Paraprotein levels at this time were stable at around 20-25.
This lasted until mid 2017 where I became very anaemic and my Paraprotein levels increased to around 35 so in July of 2017, it was suggested that I look at having a stem cell transplant which I did in January of 2018.
It was to say the least quite brutal, but looking back on reflection it was the best this for me, as I now feel literally as there is nothing wrong with me and pretty much apart from my continued diet and vitamin regimen, take nothing else except for Zometa (Zolendronic Acid) and Duloxetine to control pain and discomfort in my feet which is a side effect of the chemotherapy I underwent. It has however, taken me around 18 to get to where I am.
Anyway, you may be interested in the attached link as I found it quite useful:
Good luck and best wishes on your journey.
Regards,
Robert
Hello Carole,
I had several infusions of VTD as a prerequisite to my stem cell transplant just over 12 months ago. A known direct side affect from the Velcsde is peripheral neuropathy which I experienced in both my lower arms and lower legs. The pain and numb feeling in my arms/hands has fortunately gone however, I am still really struggling with my feet. It’s an odd feeling – or lack of feeling as in my case, which is very difficult to describe.
I have tried several things in order to try and improve the issue that I have but nothing seems to work however, I do take Doloxetine which helps with the pain but not the jelly like feeling so am always looking for something better.
I have read quite a bit about CBD oil but there are so many variants of this I would not know what to take. I am seeing my consultant soon so will raise this as a discussion item.
Kind regards,
Robert
Hello June,
I seem to be one year behind you as it was in December 2018 when I had my Autologous STC and since then, I have received around six zometa infusions which again I have every month. I too am 66 and am currently feeling really well. So well that I now only see my consultant every 3 months instead of every 2 months. This is mainly because my Paraprotein level has dropped to zero, which I am over the moon about.
As we will no doubt both agree, the whole process is pretty brutal but for me at the moment it has been all worth while.
I too feel tired at times but not fatigued. A quick sit down and some times a nap puts me back on track. I have not noticed any serious issue with forgettng things or not rememebering words, but know that this has happend at times where I put it down to the age I am. My wife tells me that I forget what she has told me but I have done this for the last 45 years and assume it is somewhat a male thing….
I would not say that I now lead a very physically active life but do keep mentally busy. I enjoy reading, finance issues, computing with some programming, so my grey cells are certainly very active. My previous background prior to retirement was aeronautical engineering, so I spend time in my garage pottering on projects which I have set myself.
I personally think that you are doing the right thing in keeping as you say, your brain active as much as possible which has to help. Try not to worry and just go with the flow. I wish as I do everyone else with Myeloma, all the very best.
Kind regards,
Robert
Hi Vince. I would not be surprised to hear that there is a link to the industry you have been working in for many years. As for myself, I was in aircraft/engine manufacturing and maintenance industry, where I was exposed to cutting fluids, coolants, hydraulic fluids, and engine fuels etc. I was diagnosed with smouldering myeloma in June of 2014 and at that time I read somewhere there was a connection to the line of business that I had been in.
In January of this year I had a stem cell transplant where I can only describe this as pretty brutal however, looking back it was indeed the best thing I did as I am now just about back to normal enjoying life to the full but just being careful in what I do. Long may is last.
Good luck and best wishes to you for the future.
Kind regards,
Robert Gale
From when she enters the isolation ward and obviously how she copes, it takes a minimum of around 15 days to complete the treatment before she is allowed to go home. It’s then that her recovery will start and where she will need people around her to help out.
Hi Again. She will be allowed visitors into her room but should obviously avoid them if they have any coughs or colds, as her immune system will be pretty much shot. Saying this, she will most probably not want that that many visitors as she will be tired and just want to sleep for most of the time, as I did.
During the stem cell extraction, she can have someone with her as my wife stayed me for all of the time. We both chatted and read a book as I was hooked up to the machine for around 4 hours for three consecutive days, in order for them to collect the amount of stem cells required.
I had a Hickman Line fitted before the procedure in the Royal Derby Hospital where I am now being treated for after care, as this makes it far easier during treatment to take blood samples out and pump in all the stuff that they need to. A little discomfort when it is fitted, but nothing too bad. The removal of the line after treatment is painless.
Hope all this helps.
Regards,
Robert
David et al. Thanks for your feedback. My son is not running for the Myeloma charity as he ran the marathon before and because he did it in under 3 hours, gained an automatic entry for this year. As I tell everyone, if they are looking to offer a little from their hard earned money, then please do this to any charity of their choice as this would be James’ wish.
The fatigue I was initially feeling (I am 66 by the way) completely went away after around 6 weeks following my SCT however, as David as mentioned the tiredness does take a little longer. I am now sleeping pretty much as normal for around 10 hours though the night and waking up feeling like I want to take the world on. Never let a day pass that you don’t do something which is the way I manage my Myeloma.
Nottingham City Hospital is really a great place and as mentioned before, have nothing but praise for them. Only issue is the food when in the isolation ward, as it was terrible so a good job I did not have any appetite! Anyone who is unfortunate enough to have Myeloma, will have no one better than Professor Russell and his team to look after them. Your sister could not be in better hands.
When your sister has her stem cells removed, she will be under “Angie” who is the senior nurse in the stem cell extraction area. A really wonderful person who is so passionate about what she does and who she cares for. A credit to the NHS who have looked after me so well. I only have praise and respect for them.
Regards everyone.
Robert
Hi. I have just celebrated 12 weeks since my stem cell transplant in Nottingham City Hospital where all the staff, were just amazing. I am diagnosed now as being in a “very good partial remission” which is what the majority of patients achieve. It is indeed as rocky ride at times so tell your dear sister to stay strong as it’s a positive attitude that can really help. She will indeed lose her hair as we all do however, I do appreciate that it is much harder for a woman than a man, but again like me, after a few weeks it will start to grow again. Drinking plenty of fluids (and I mean plenty) and eating nutritious foods, will help with her recovery as she will also lose weight. It will all add to her having the longest remission and quality of life. My very best wishes to her for the future.
By the way, my youngest son James is running in the London Marathon today with “Myeloma” splashed all over his running vest, in order to raise awareness. His bib number is 32371, so if anyone is down there and manages to see him, please give him a shout and together we can in time beat this disease.
Kind regards, Robert Gale
Hi there,
I’m sorry to hear that you are suffering from PN as I am also suffering from the same issue. I had 2 cycles of VTD but suffered from servere stomach pain where I ended up in A&E, so they took me off the thalidomide all together.
Even after one cycle I started to feel issues with my thighs, calves and feet where they were feeling numb and tingling. After 2 cycles I had to give up on the Velcade and they put me on Revlimid which I coped with far better. I ended up having a total of 5 cycles before I had my stem cell mobilisation and then stem cell harvesting.
It was definitely the Velcade which caused me to have PN and although my thighs and calves are now back to normal, my feet are still pretty bad and as such, I struggle to walk any distance. I did some research on Velcade and PN from this is a known side effect.
Originally, I tried all sorts of treatments from massage, hot water bottles, and ice packs but nothing seemed to work. I raised this with the hospital where they prescribed me with Gabapentin, where I take 900mg per day (1 x 300mg tablets morning, afternoon and night) and also, Duloxetine where I take 120mg per day (1 x 60mg tablets morning and nigh). They have helped a little where I can now sleep through the night, but my feet are always cold as though there is limited blood circulating. I was hoping for far better results as the PN has now been going on for 6 months.
I am told that it can take some time for any normality to return and in some cases, it never does. I guess I now try to block out the pain as much as I can, but it’s always there.
In 10 days time I have my stem cell transplant where afterwards, there is quite a long recovery time. If the pain is still there following this, I will look to see if I can find anyone out there in the medical profession who can help, even if it means paying for it.
I wish you well and the drugs which I take that I have mentioned above, may help you to manage your issue far better. Good luck anyway.
Regards,
Robert
Hi Jan,
Just thought I would update you on where I am now as you were kind enough to offer me some advice on my issues with PN.
My wife and I yesterday, paid our first visit to Nottingham City Hospital where my stem cell transplant is now tentatively planned for around the beginning of January 2018. Not looking forward to it but what else can we do? Prior to this, I need to have a Hickman line fitted and then, my stem cells harvested and frozen for use later on.
I’m still having awful issues with PN and my feet, where the pain and discomfort seems to be getting far worse which is now affecting my ability to walk any distance. I thought that coming off the Velcade and starting Revlimid may have helped but I cannot see that it has. I have increased my dose of Gabapentin from 900mg per day to 1800mg per day, but this also has not helped. I do have a meeting on Tuesday at my local hospital where I intend to raise this with them and will mention Fentanyl patches and also, Tramadol just to see what they have to say.
Anyway, thanks for listening to me and as always and I hope you are managing well and living life to the fullness of your ability.
Kind regards,
Robert
Good Morning Jan,
You timed your post perfectly as this morning I have an appointment at the hospital to see where my Paraprotein levels are, as I have just finished my first round of chemotherapy treatment over the last 4 months which I must admit, has been a very rocky ride to say the least. Still, I have to see it as a means to an end and in an odd way, look forward to my stem cell transplant in Nottingham where hopefully then for a couple of years, I can get my life back.
The change from Velcade to Revlimid certainly made a big difference and together with the pain management drug Gagapentin which they gave me, it pretty much removed the PN in my upper and lower legs however, similar to yourself, I too am still suffering from PN in my feet, ankles and calves perhaps to a worse extent than ever before and exactly the same as you describe. I am only taking a 900mg dose which I see is very low, so this morning will ask the doctor if I should increase this to a higher dose as I see that others take up to 2700mg on a daily basis.
I also have tried heat pads on my feet, electric blankets, hot baths together with hot water bottles but nothing seems to make any significant difference, so again, I will raise this with the doctor later today.
I have a shot of B12 at my local surgery every 3 months and am due for another one soon, but will also look at B6 too. All will be revealed today from my blood test from last week where I had checks to see if I was also suffering from any vitamin deficiency.
If I may, I will keep you posted but in the meantime, thank you again for your post and may I wish you good look going forward in the management of your issues.
Kind regards,
Robert
Hi Alice,
Thank you for your feedback. To start off with I was on a VTD regimen but suffered so may side effects from the thalidomide they took me off this pretty much straight away and have replaced it with Cyclosphosphamide which I seem to be far more tolerant to. Then came the side effects from the Velcade where I read somewhere that there was a high percentage chance of suffering from PD by taking this. As I was really struggling from the PD where I can only describe this as a feeling where someone is sticking needles in the back of my thighs, calves and my feel like they belong to someone else, they have now put me on Revlimid where again, I seem to be far more tolerant to – apart from really bad constipation that is! The PD has certainly reduced to a far more manageable level, but I am still hoping for a further reduction now that the hospital have changed my regimen. You may find the article regarding PD in the below link of interest:
http://www.oncotherapynetwork.com/hematologic-cancer-targets/managing-bortezomib-induced-neuropathy
I too suffer from fluid retention and at the beginning of certain weeks where I take 40mg of Dexamethasone in one dose, I can quite easily put on around 8-10 pounds during the week however, the following week when I am not taking it, I can lose it just as quickly. My face also blooms and I honestly feel like the “Michelin Man”…
I’ll definitely take a look at the Biofreeze that you mention in the hope that it helps however, now that I am no longer taking Velcade, I am hoping it will reduce further naturally.
Once again, many thanks for your comments and may I wish you well for the future.
Kind regards,
Robert Gale
Hi,
Sorry for the late input but I have not been on the site for a while.
I was diagnosed with smouldering Myeloma around 21 months ago and after reading “Margaret’s Blog”, decided to try a supplement regime which includes both Curcumin and Theracurmin. I read somewhere that it’s not about the dose, but more of what you can absorb. Evidently, neither of the above absorb too well, so I take both krill oil and flaxseed which adds to the absorbtion rate and I also take this on an empty stomach. My last set of blood tests which I have taken every two months at my local hospital, were the best I had seen and my Paraprotein level was stable at 28g/L which, in reality, I don’t know if my so called regime is doing any good, but psychologically it certainly helps me so I will be keeping this up. By the way, I buy all my supplements from Swanson Health Products in the States, where even after paying UK VAT at 20% and an £8.00 management/handling charge, they are still much cheaper than any UK outlet that I know of. Their Customers Services are also excellent.
Kind regards to all you “smoulderers” out there.
Robert
Hi Debbie,
Sorry to hear of the dilemma which you and your husband are facing.
Do take a look at the Spring 2016 copy of the Myeloma Matters magazine where on page 10 and 11, there is an article on the role of the welfare rights advisor, who I suggest you speak to. You should be able to find one at your Macmillan centre where again they should have an office at your local hospital.
They should be able to advise and offer independant support on all of your concerns especially about early retirement and any benefits which you may be able to claim. Anyway, hope this kelps and good luck to you both.
Regards,
Robert
Hello Paul. I was diagnosed with smouldering myeloma around 18 months ago which was found after I had continuous back pain. I have no lesions so far and consider myself “lucky” to have been diagnosed early and the hospital have me on a watch and wait programme which is basically do nothing. Being the person that I am, I had to try something myself, so together with various supplements that I take, I also stick to a very strict diet which consists of no meat or alcohol, and because I have slightly raised calcium levels, I restrict my dairy intake by avoiding cheese and drinking only skimmed milk. I have never smoked, so an added bonus here. Kidney issues are a concern to all of us, so I try and drink at least 2 litres a day of fluid a day (which is difficult) and is made up of water and various teas, but especially green tea as it is full of antioxidants. The hospital has advised me to flush out my kidneys as much as possible however, being 63, the rule is never be too far away from a loo…
Kind regards,
Robert