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
Hi Ceri,
I had my scan one day and then the following day, received a call from my GP as the results from the scan were through. It was then only a few days before I saw my encologist at the hospital for the first time.
As another member of the forum has indicated, this seems like fairly good news for your mother.
Regards,
Robert
Hi Jan,
Sadly, I too have been suffering from a flu type virus for the last couple of weeks although saying this, I am now fortunately starting to come out the other end.
I started with a really high temperature(39.2 degrees C) so call the local Myeloma help line who suggested that based on what I had to tell them, a visit to the hospital was needed. Must admit that I was treated pretty much immediately on the haematology ward where I had an examination, followed by blood tests and a chest X-Ray. I was given some antibiotics and pain killers and was discharged two hours later. A really superb service and I made my thoughts on this known to all on the ward who treated me.
As I say, I am now feeling much better but it will be also interesting for me to see where my light chain numbers are following my next blood tests scheduled for early June.
Just as a comparison, my last blood tests indicated a kappa light chain reading of 260, a haemoglobin count of 120, and a Neutrophils count of 1.27.
I was sorry to hear the news of you father. I wish him well going forward,
Regards,
Robert
Hi Jan,
Thanks for your comments as they are really appreciated.
I’ve not really asked about any future B12 injections but will do this in due course. The health professional who administered the injections, did suggest that I may need a continuing top up every 3 months, which would be fine by me. My wife also tells me that my skin tone has changed for the better as previously, I looked quite pale. Anyway, all for the good here.
I’ve also had a look on my local surgery’s website, where I can see an order for Vitamin B12 was placed on my behalf. The dose is 1mg/1ml solution for injection ampoules, so hope this helps on the dosage that you are asking about.
My kappa light chain count had also fell this time however, my lambda light chain had also fallen but by a far larger ration and therefore, my kappa/lambda ratio was really high at 210 whereas previously, my ratio was down to 63, but you can’t win them all, can you?
Anyway, sorry to hear that you have not been feeling well with the flu, so hope you start to feel a little better soon.
Regards,
Robert
Hi Jan,
As promised in my last post, I thought I would send you a further update.
This morning I had a scheduled meeting with my haematologist at my local hospital. All my previously recorded paraprotein levels had been around 26 or 27 however, this time they had fallen to their lowest with a score of 24, so I was really pleased. As I have mentioned before, I am taking several supplements where the jury is still out on this subject for nearly all the medical fraternity, but if I feel that there is a minute benefit whether physically or psychologically, then I will continue to take them.
My vitamin B12 level was previously 160 where I believe that the normal range is around 200 – 900 picograms per milliliter (pg/mL). Following my course of six injections over a period of three weeks, the recorded level this time is 1183 pg/mL so a massive increase. Evidently, if there is too much B12 in your system, then the body just discards it.
I also had a reduced immune system with both red and white blood cell counts being low however, this time both counts had increased so all in all, I was quite pleased with my overall numbers.
My next review is now in 3 months time, so at least for the next few weeks, I can attempt to live a “normal” life.
Finally, I trust all is as well as can be with yourself.
Regards,
Robert
Hi Jan,
May thanks for your response.
Since I was diagnosed in June of last year, I have had five appointments with my haematologist and on each occasion, I have obtained copies of my blood test results. As a side issue, I am under the Derby Royal Hospital who I have to say, are excellent. Anyway, I am plotting in excel around 18 different items from these blood results which do include both red blood cell count and haemoglobin count, where both have always been consistently low.
Only on my last blood test was vitamin B12 measured which I assume was an additional check due to my red blood cell count and haemoglobin levels being low.
My current B12 level is around 160 pmol/mL which is supposedly a slight concern as the minimum reading should be around 200 pmol/mL and hence, the need for vitamin B12 injections which I have now arranged with my local surgery.
I don’t feel tired or fatigued and have always managed to sleep pretty well however, I do take quite a combination of nutrients in order to boost whatever I can as part of my “self help” regime.
My next hospital appointment is on 17th March where I can see from the blood test request sheet that I already have, that Vitamin B12 is included as a test. It will therefore, be interesting to see if my current level of B12 increases accordingly and I will of course keep you posted.
Thank you once again for your post.
Kind regards,
Robert
Hello Maureen,
Don’t know if orangelily has responded however, I have found this in Amazon/Kindle which may be the book that is being referred to. Please see below for the link:
Warmest regards,
Robert
Hi Karen,
I can certainly relate to the increased anxiousness as you get closer to that 6 week/8 week blood test. Sleepless nights a week before the test in conjunction with being a bit of a grouch – so my wife tells me! I saw another consultant last Monday at my local hospital who asked me how I was? I responded that I had actually come to the hospital for her to tell me this! Anyway, she asked if I had had, my flu jab as my immune system was pretty low but went on to say that she could not speak too loud as she had a terrible cough and cold. Following this revelation, I moved a little further away from her… My good news was that I too was considered to be stable and over the last 5 months where I have had now 4 blood tests, my PP levels have been 27, 26, 27, and 26 so am as happy as I can be as a smoulderer.
I am doing whatever I can to remain at my current smouldering level by taking a regime of supplements which keep me a little happier than if I were to do nothing. I did mention this at my first meeting which was met by raised eyebrows so following this, I keep whatever it is that I am taking to myself, as I know that as not being on medication, they will do me no harm however, doing what I am helps me mentally and hopefully, will help me keep at the smouldering level.
Warmest regards,
Robert
Morning Tony,
Can you post a copy of the article?
Regards,
Robert
Hello Helen,
A warm welcome to the forum.
May I ask exactly what supplements you are taking or, thinking of taking?
Regards,
Robert
Hi Rhiannon,
I am 62 years old and was only diagnosed some 4 months ago. I had a MRI scan for a long standing back problem which by the way, was totally separate to the Myeloma which they actually found during the scan, so a real shock. As I have said, I do however, consider myself one of the lucky ones as I am still at the smouldering stage but saying this, I wake up every morning wondering if this is the day that I will start to feel any different.
We do indeed have a very strong family bond as for many years we lived and worked in the Middle East where although there are huge problems, we learnt that family is everything. I firmly believe that because of our exposure, we have the family bond that we do, which is indeed something very special.
When I read your plight, I felt an extra sense of empathy towards you, as you are exactly the same age as my wife was when she found out that her mother was suffering from cancer – and guess what, it was Myeloma. This was in 1970 and she lived for 10 years and sadly passed away in 1980. It’s over 40 years since she was diagnosed and although huge steps in treatment of the symptoms of the disease have taken place, there is still no cure.
Put an arm around your father as much as he will allow which is all you can do. Just be there for him and I know that in time, he will also know that the time is right to allow you to get a little closer.
Stay positive and both you and, your father are in my thoughts.
Regards,
Robert
Hi Mavis,
As promised, now that I am back in the UK I thought I would update you following my last post.
I have only been diagnosed with Myeloma for around 4 months which is currently at the smouldering stage and was found quite by chance, so I consider myself lucky in one way, but very unlucky in another…
I am trying very hard to stay at the smouldering stage as currently my “treatment” is just watch and wait. I am not the type of person who can just sit back and do nothing so have read quite a bit on the subject. I bought a very interesting book which was written by Dr. Abdulkalan M. Shamsuddin which I am attaching a link to on Amazon:
http://www.amazon.co.uk/gp/product/1575663570/ref=oh_aui_detailpage_o06_s00?ie=UTF8&psc=1
The book is quite revealing and is all about some extensive research that the author did over several years, where he looked at the benefits of a mixture of Inositol and Hexaphosphate, where I have attached a summary sheet. The supplement is manufactured by a company called Natural Factors. In addition to this, I also take some other supplements and hope that over the coming time, can have some physical benefit but at the moment, it is certainly giving me a psychological benefit.
Although I have currently only had three blood tests following my diagnosis, I have obtained copies of these and have started to plot my blood results together with trend lines in excel. It’s still very early days at the moment and I guess only time will tell if there is any physical benefit to be had, but if not, then it will not be for the want of trying
Hope this helps.
Kind Regards and my best wishes to you.
Robert
Hi Rhiannon,
After reading your comments, my heart goes out to you and at such a young age, you should not be facing the situation with your father and his illness. Myeloma like any other cancer, knows no boundaries.
I too am a MM sufferer but at the moment, I am still at the smouldering stage and trying to do what I can to stay there. I have two sons who also live away so there is some physical distance between us. It was difficult for me to tell both of them what I am suffering from especially as my eldest son lost his wife to secondary cancer at the age of 31, around 18 months ago, so he was pretty devastated to learn that his father also had another form of cancer.
We have always been a close family and talk on the telephone/FaceTime on a regular basis so am lucky in this respect even though I don’t see them face to face as often as I would like. It must be more difficult for yourself if you father does not want to discuss his issues with you, but if this is his wish then it’s something you have to try hard to understand and respect – but I can appreciate it is not easy.
All you can do is be there for him as much as he wants and just let him know this. Pick up the phone as often as you can and tell him the things that matter to you and perhaps he will at some point open up and tell you the things that matter to him.
My thoughts are with you.
Regards,
Robert
Hi Mavis,
I am out of the UK at the moment on holiday however, I will drop you a more detailed note when I return as I have some additional material which I will send to you as a reference.
By the way, the weather in Gran Canaria is fantastic and just what the doctor ordered…