May 2009 Update, it’s now active Multiple Myeloma

Hi all,

I went for my follow up appointment yesterday to get the results of my bone marrow biopsy and other tests. My case had been put to a panel of cancer specialists and it has now been decided that my new diagnosis is full blown active Multiple Myeloma. I start chemotherapy on June 25th 2009, I have been allowed to go on holiday for a month before I start the treatment, so I am off to Ibiza (Spanish Balearic Islands).

My diagnosis has been based on my free light chain ratio which has been doubling ever month since November 2008, my bone marrow plasma cells which are now 60% (normal is 5% or less). I also have Bence Jones Protein in my urine which I have not had before and my haemaglobin is borderline and so is my albumin.

The chemotherapy will last about six months and the protocol they are using is called CTD, it is all taken in tablet form. The CTD stands for the three drugs they will use which are Cyclophosphamide (chemotherapy) Thalidomide (immunomodulatory) and Dexamethazone (stong steroids). After the six months chemotherapy I will be given a stem cell transplant using my own stem cells, followed by a second stem cell transplant using related donor stem cells which will come from my Mother or Father because unfortunately I do not have Brothers or Sisters which would be the preferred choice for the transplant.

I am in really good spirits and carrying on with life as normal and still doing my degree course and my hobbies. What’s the point in worrying it will change nothing. I am a happy cheerful person with a zest for life and my illness will not take that away from me !!!

I will update again with more info very soon, best wishes to you all xxxxxxxxx

February 2009 Update

Hi all,

I went for my normal monthly treatment at the Milton Keynes Macmillan Cancer Unit on February 12th 2009. For a change my IV drip went in first time, they don’t worry me at all now, I am so used to them. The good news is that the Sandoglobulin Infusion is working, basically it’s Human Immunoglobulin, taken from a pool of 20,000 blood donors and made into a clear liquid and infused into me over 6 hours once a month. The infusion is given to me because I have very low immunity and it is working to keep my repeated infections away.

After sitting having my infusion for a while I am called into the examination room to see my specialist, this time I saw her registrar. I got my blood results from my last visit and my levels have unfortunately gone up, which is not good because it means that my disease is progressing to a more active state. Some people reading this will understand the levels and some won’t but here are a few results I have received.

Kappa Light Chain up from November it was 126 and is now 157.
Lambda Light Chain is down from November it was 2.4 and is now 1.0.
The Kappa Lambda Ratio has gone up since November from 52.50 to 111.
My paraprotein is 29.2.
I didn’t get my IGg level
I still have Hyperviscosity (Thickened blood)

The worst part of my results was my MRI scan which I had done 3 weeks ago. I have been getting pain in my spine at the top, middle and bottom so I reported it to my specialist and she sent me for an MRI scan. I was due to have one in March anyway but she brought it forward due to the pain. The results shocked me !!! I knew that the pain was probably due to herniated (slipped disks) and sure enough I was proved right. I have 2 bulging disks in my cervical spine (top/neck) I have one slightly torn disk in the Thorasic spine (middle) and I still have a disc burning out in my Lumbar (lower) spine, which I knew about from my last MRI scan. My scan also showed that the Myeloma (plasma cell cancer) has infiltrated the bone marrow in my spine from top to bottom. The registrar has said that chemo will probably begin in two or three months :-(

I was too shocked to really understand what was said and there were many questions I should have asked but didn’t!!! I have had to do my research to find out what this means. Basically an MRI shows a detailed view of bones, soft tissues and marrow, the scan image looks fairly dark in shades of greys in a normal MRI scan, when myeloma infiltrates the marrow of the spine a more intense signal is recieved by the MRI scanner and it shows up as a brighter, whiter area on the image. MRI scans are used to check for this infiltration and all my previous scans have been negative for myeloma. I now have to have a skeletal survey (full body x-rays) to check for lesions (punched out holes) in the bones as these do not show up on MRI scans. I was due to have this done in March but it has been brought forward because of the MRI results. I will be having a bone marrow biopsy in March to check the levels of myeloma in the marrow. Normal marrow contains less than 5% plasma cells, my last biopsy over a year ago showed 26% plasma, which is all bad plasma (myeloma cells).

My specialist cannot yet tell whether I still have smouldering myeloma or whether I now have full blown myeloma. From the results and the research I have done I know that I now have full blown myeloma, as myeloma bone marrow is not seen in the MRI scans of normal people or those with just a monoclonal protein in their blood. There has to be a lot of myeloma in the marrow to show up on MRI especially when a contrast injection is not used before the scan. People with myeloma which shows on MRI, have a poorer prognosis (lifespan/outcome) than those that do not show infiltration on MRI.

So it looks like I am at the crossover, not only are my results bad bt I am starting to get symptoms now, I have had 5 night sweats (wake up soaked through) in the last 6 weeks, my back is permanently aching like I have bad toothace or a red hot tennis ball in my lower spine, and I am getting very tired and spaced out and my appetite isn’t quite as good as it was.

So folks it looks like the rot may have set in, and I now have a hell of a fight on my hands. Mutiple Myeloma is not curable, but it is treatable to relieve symptoms and try and slow down the disease progression. Average survival is 5 years with treatment, it is 9 months without treatment !!! Some lucky people have for 10 even 20 years after diagnosis, so its not all doom and gloom and new treatments are popping up all the time. Death in myeloma usually occurs through the medication/treatment no longer having an effect and the usual cause of death is kidney failure, infection or other multiple organ failure. During treatment remission will hopefully be acheived many times and hopefully a long remission will be achieved after a stem cell transplant, which can also be repeated several times, as long as the treatments work the patients survive, so its not all bad news.

I am keeping mentally and physically strong and I am still keeping myself busy with my Interior Design Degree and my mad crazy circus of a family, bless them all and I absolutely refuse to be miserable, I have no time for that and it solves nothing, a strong stress free attitude will help me through and with my family by my side I have the strength of an army. I will update my blog when I get my next results through. Take care xxxxxx :-)

November 2008 update

Hi everyone,

Sorry its been so long, I have been busy with redecorating my new house and working on my Interior Design Degree. I am pleased to say I got A and B grades for my first assignments in my degree so I hope it continues as I would love to put my graduation picture on here in a few years time. I have also started to go to Spanish lessons  and I am learning how to paint and draw fairies so I am a busy woman at the moment :-) .

On the subject of my health, I have been feeling ok and my immunoglobulin treatment which I have monthly is keeping the infections under control. All my family have been getting chest infections and ear and throat infections and thankfully I have remained fit and well. Initially I was only supposed to be having six months treatment with the immunoglobulin infusions but it has been extended because it is working so well. Its such an expensive treatment and I am very lucky  and grateful that the National Health Service in this country is paying for it for me.

Today I am feeling low, even though I have plenty to keep me busy sometimes I can’t help but get a little down when I think of my future. Although I know I am lucky to be able to do all the things I do and I am in reasonable health and have a lovely family, I cant help being afraid and uncertain of my future.

My specialist said to me on my las monthly visit that she is re-staging me in March 2009, which basically means I am having a bone marrow biopsy, full skeletal survey (x-rays of whole body) an MRI scan an blood and urine tests. The test results will paint a picture of where I am at with this multiple myeloma, I will either be still indolent/smoldering i.e pre-myeloma or I will be full blown stage I, II or III, meaning I will need treatment i.e chemotherapy and maybe stem cell transplant. Hopefully I will still be smoldering and not need treatment.

I asked my specialist a question at my last visit and it has proved to me that you should never ask a question if you are not fully prepared for the answer!!!!! I asked how long on average does it take smoldering myeloma to turn into full blown myeloma requiring treatment?  The answer was, because of the trend and pattern of my monthly results, I will definitely require chemotherapy within 5 years. In other words I have less than 5 years before I have full blown multiple myeloma, plasma cell cancer, a blood cancer a form of leukemia any way you put it its the big C the CANCER word .

Today I feel like I am waiting for the inevitable, I have felt very tired and run down in general today and when I feel like this I get low and depressed and start to dwell on my illness. I have my monthly immunoglobulin treatment on Thursday 27th November so its round about this time of the month I begin to worry about my results from last month. I hate it when the specialist approaches me for my results, I am just waiting for those dreaded words, you need to start chemotherapy, you have progressed and now have full blown cancer.   I am not over reacting this is my life, every month I may hear those words, this is the cruelest  way  to develop  an incurable disease, you know its coming and your just waiting.  I  know there are many thousands of people worse off than me  and bless them all, but I have a right to feel a little sorry for myself every now and then because I am human.

Until next time, I will carry on with my studying and my hobbies, carry on enjoying family life, carry on looking forward to the warmth of the spring and the heat of the summer, and carry on praying for a cure for multiple myeloma. Bless you all xxxxx

Another update

My most recent immunoglobulin treatment went well, but my results weren’t so good.

I have now got hyperviscosity (thick blood) which explains the tiredeness I have been feeling.

My Igg is 42 and my paraprotein is 31, my Haematologist said that chemotherapy usually starts when the paraprotein level reaches 30, but she is still keeping me on a watch and wait because all my other results, like x-rays and kidneys etc. are all ok.

I learnt something at my appointment, that is never ever ask a question unless you are fully prepared for the answer. i asked if and when my smouldering myeloma would turn to full blown multiple myeloma, and my Haematologist said that by the trend of my results, I will definately need chemotherapy within 5 years, scary and not the best news inthe world.

I am being re-staged in March 2009, all my bloods, urine, bone marrow, x-rays and an MRI scan will be put together to stage me, hopefully I will still be smoldering and not any worse. I am keeping busy and upbeat and my haematologist told me to keep occupied, go on holidays and excercise to avoid stress, I took that to mean, do everything while you are well enough to do it. I enjoy my life and I have far too much to do to mope around feeling sorry for myself, my new house isn’t going to decorate itself, and I wont pass my degree sitting worrying, so life well and truly goes on for me. :-)

Its been a long time, sorry :-)

Hi all,

I am so sorry I have not updated my blog for ages.

I have been doing well on my immunoglobulin treatment, no side effects other than tiredness for a day and a major headache for a day each time. Theres not much to report where my blood test results are concerned, they are fairly stable but are creeping up very gradually. I took a course of preventetive medication to stop my shingles/herpes virus recurring, it worked for a time but this week I have ended up with another outbreak, so I am back on 800mg of Aciclovir 5 times a day. I am going to be taking Aciclovir for life now to prevent the Herpes virus recurring, I am going to be prescribed 200mg 3 times a day for life !!! I have been suffering rib pain for over a week now, my GP said my chest sounds clear but it could be slight pleurisy so he has prescribed me antibiotics just in case. The rib pain has not improved and I am now worried that my smoldering multiple myeloma may have progressed to full blown multiple myeloma. I have been having a lot of leg pain and lower pain lately too. I phoned the Macmillan unit, where I go each month for my treatment and told them about my rib pain and herpes outbreak and they want to see me next week on 24th Sep 2008 to run extra tests, I am due for my next immunoglobulin treatment on 1st Oct 2008. I think my Haematologist will order another bone marrow biopsy to see what is going on and probably a chest x-ray as well as the usual blood and urine tests. I will try and remember to update this blog with the results and outcome of my appointment.

I have written an e-mail to the Cancerbackup Nurses which have now joined forces with Macmillan Cancer Care, I have asked for some advice from them as they are brilliant at helping answer questions and giving support. I will update my blog if I get any info which is interesting.

Be in touch soon :-) xxxxx

2nd Immunoglobulin treatment and results

My Intravenous immunoglobulin treatment went fine today, I am left feeling tired once again but not as bad as last time at the moment.

The good news is my IGg level has dropped from 44.8 to 37. The bad news is my paraprotein ( myeloma burden ) is on the rise and since 2005 has risen from 13 to 29.5. When this level has risen to over 30 and it inevitably will, then my specialist will decide whether to start treatment (chemotherapy) but it will be based on how my general health is and whether there are any other factors to warrant starting treatment.

My MRI scan results show that I have 3 discs causing problems, one is torn and 2 are burning out and dehydrated, these discs are all in my lumbar spine, its not myeloma related and at least I now know why my back hurts.

The caravan renovations are going brilliantly and I am really enjoying keeping occupied and using my interior design skills, I cant wait to take off to spain in my caravan in June.

Whoops Ebay

I accidentally brought two caravans (holiday trailers) on Ebay whoops! I am now using my interior design skills to renovate one of them to put it back on Ebay, I wont make a profit on it, I am doing it purely for a challenge. The other caravan is going to be going on a road trip, we are taking it from Portsmouth in the UK onto a ferry to Biloba (33 hours) in Northern Spain, then we will travel right across to Southern Spain to Denia a (9 hours) and then from Denia to Ibiza in the Balearic Islands of Spain. Once in Ibiza we have found a campsite to leave our caravan on so that we can have family holidays there, it’s only a 2 hour flight from the UK.

I am not feeling too great today, I am a bit dizzy and my legs, hips and back are so painful that I can’t sleep. I have taken Paracetamol and codeine, Tramadol and Ibuprofen but nothing has worked so I am sitting here at 01:48 writing my blog. I have been sneezing as well today so I hope I am not coming down with a bug, I shouldn’t be because of my immune treatment.

I have been busying myself on Facebook as well playing games and talking to friends, Facebook can be quite fun in a goofy kind of way. Catch you all later xx

My new treatment

I had my first infusion of Sandoglobulin IV on 12th March 2008. It is basically immunoglobulins (infection fighting cells) taken from about 20,000 blood donations, its taken from the plasma part of the blood, its heat treated to remove viruses and then feeze dried. At the Macmillan cancer unit it is then mixed with a saline solution and then given to me by intravenous drip. The treatment went very well and the only side effect was fatigue for 2 days. I have to have the treatment each month for six months, my next one is on 9th April 2008. This treatment is a measure to attempt to keep my infections under control, it will not help my Smouldering Myeloma. It is not known whether this treatment will work for me so it is just a trial for 6 months, if it is not effective they will stop it.

I have had an MRI of my spine and I have had a skeletal survey of my whole sleleton by x-ray, I wont get the results until 9th April. These tests are done to monitor my bones as myeloma can cause them to lose density and can cause holes/lesions to form in the bones making them fragile.

My symptoms are still the same achy legs, hips and feet and hot sweats but no new ones have developed so that is good news. Mentally I am coping exremely well and I am doing just fine.

More results and treatment

I went for my follow up today after being told by my Haematologist last week, that she was 80% sure my MGUS had turned to myeloma and that I may need to start chemo. My Haemo had a video conference with a big UK cancer specialist hospital, with several myeloma specialists in attendance. STILL they are not sure whether I need chemo, some said I did and some disagreed, in the end they told my haemo it was back to her to decide the best course of action for me. I am such a difficult case that no one seems to know what is going on. I asked for a diagnosis and my Haemo says I now have smouldering myeloma.

My latest results are the same as the ones from a week ago

Bone Marrow Plasma 25%

IGg paraprotein 44.8 (UK) 4480 (US)

IGM is too low

IGA is too low

I have hypogammaglobulinaemia

All other bloods and urine are fine

B2 microglobulin is being tested

Blood viscosity is being tested

Blood and urine taken again today dont know when I will get the results.

I forgot to ask for the results of my MRI which was done on Tuesday4th March.

Due to my recurrent infections my Haemo suggested to the panel of specialists that I may benefit from Immunoglobulin transfusion, some of the panel said it could work and others disagreed, but my Haemo has said it wouldn’t hurt to try it. I have now been signed over to the care of the cancer unit (Macmillan Unit) at my hospital, rather than the Haemo department. I Have to attend on Wednesday 12th March at 09:00 for my first transfusion of SANDOGLOBULIN, it will take allday as if it is done too fast there is a risk of blood clots and/or allergic reaction. If my blood is already to thick/viscous then I wont be able to have the transfusion until my blood is thinned out. Sandoglobulin is basically a mixture of Immunoglobulins from a variety of blood donors, its heated and dried to help remove any viruses such as HIV and Hep C and then it is mixed with saline and hooked up to an IV drip. I have agreed to try the treatment but I am obviously worried, but its got to be better than starting chemo.

Results Day

Hi everyone,

Today I got the results of my bloods and bone marrow biopsy. Lets
just say the news was not good.

My IGG is 4480 (44.8 UK)
My bone marrow is 25% plasma cells and a small amount of myeloma
cells have been seen in the marrow
My Electrophoresis light chain M component is 25g/l
My albumin is 34
MY B2 microglobulin has not been measured but is being done today, I
dont know when I will get the results.

basically my haemo has scheduled an MRI scan for Tueday 4th March and
is having a video conference with another specialist cancer unit in
our area on Thursday morning 6th March and I have to go back to the
clinic at 4.10 British time on Thursday to find out if Chemo
treatment needs to be started. My Haemo is 80% sure that I need
treatment and said that if its not smoldering myeloma then its full
blown Multiple Myeloma, but until she has had the video conference
and discussed my case with the oter specialists, she can’t give me a
100% diagnosis. She has said that I definately no longer have MGUS
and that I have progressed. A full skeletal survey is being done
after the MRI as soon as my aemo can get an appointment for me at the
x-ray department.

I will keep up my healthy eating and my supplements and keep
positive, life dont stop because you get a bit of bad news, and I am
sure as he*! I am not going to be miserable. I dont yet think its
sunk in yet though as I feel numb, but oh well never mind.

Love to you all and I will update you all again on thursday
Best wishes
Love Jane x