Thank you for your kind messages. Funeral Friday…life is difficult.
Jaqui
Iam not sure if I am posting this message in the right place, but just wanted to finalise Glenn's postings. I know that he has not been on here for some time to post messages but has certainly kept up to date with information and blogs. Sadly Glenns fight ended on Monday 21/1 at 5.15 p.m. We had been told that he had an aggressive form of myeloma and despite a succesfull SCT remission was short and Revlamid etc didn't work. He became more and more neutropenic and finally was overtaken by pneumonia.He was so brave and fought right to the end and I will miss him greatly. Jaqui (his fiancee)
Thanks Shirl and Tom.I am a little apprehensive but know that it is necessary and hope to get good results from it. I am also unbelievably tired at the moment and no amount of sleep refreshes me…no energy either, but suppose that is down to the chemo along with all of the other meds and morphine that I am taking. Can't wait for this bit to be over, then get the SCT out of the way and hopefully get back to some sort of normality…drug free, less pain etc. Just hope that I can get a good few years before its time to do it all again.
Hi Phil
Thank you for your positive thoughts, they are really welcome as I have only just completed my first cycle and Jaqui and I are still coming to terms with, not just the illness, but the changes it has made to our day to day living.
I am hoping to have SCT later this year, if the chemotherapy allows.
Would it be possible for you to tell me what you had to endure whilst having the treatment, and also what does stringent complete remission actually mean, as opposed to remission or complete remission?
Thank you again
Glenn
Hello Dai
So sorry to hear about your latest set back.
Sometimes it is difficult to find the right words to describe our own individual journey.
I have, however, found that heroes, such as you, with your strength of mind and positive attitude, help others, such as myself, dig deep inside to continue the fight in our own individual battles.
Good luck to you, Janet and the family.
Glenn
Hi Marie
Thank you for your wonderful message.
It has given Jaqui and I a lot on encouragement going forward.
It sounds like your journey has been a similar one, to which we are embarking on at the moment.
I, however, at present have been luckier than Stephen and have not suffered from a compressed spine.
I have though been told that my vertebrae is very fragile due to the mm and I am being given Zometa to help strengthen the bone, as the consultant has described the vertebrae as being like match boxes, very soft, instead of hard bone.
I have had a new wheelchair delivered this morning, one which is going to give me more independence, up to now, Jaqui has been parking me in a corner somewhere whilst she has a bit of retail therapy.
Just another small positive step on the journey ahead.
The news about Stephen's 90k cycle ride, again has given me a lift, as I and a few friends were riding the full length of France in the summer of next year, I was cycling approximately 30 miles a day in training just days before we found out about the mm.
Next week I have an appointment at Clatterbridge, concerning the latest news on the tumour on my spine, hopefully the radiotherapy will have helped to alleviate the current pain I am experiencing at the base of my spine.
Thanks again Marie for your positive story, I hope you and Stephen continue to enjoy a wonderful and normal life together.
Glenn xx
Hi Paul
Thank you for your supportive message.
I am also keeping a daily diary recording how I feel with each different type of medication I am on.
I find, for me this is one of the best ways forward, knowing what to expect in the days ahead.
For example, as you, when I am on the steroids, even though I feel physically stronger, my fiancee knows she can expect the odd mood swing, during the four days I am on the steroids.
As for when I am on the Velcade, we then have different expectations, as my body reacts in a less positive way, tiredness, chills, feeling weak.
So with the help of the diary we can plan positive days out, something we have never been able to do in the past as I used to have my own business and worked 6-7 days per week.
Now we are spending 24 hours a day together, another positive to come from this unwanted illness.
We are trying to treat the next 5 cycles of chemo and then possible stem cell treatment as a long holiday using the diary rather than focussing on the illness itself, for example off to Harrogate for a weekend in early February.
I think I have said it before on this site, but I believe our job is to concentrate on the mind and let the fantastic medical teams take care of the rest.
Good luck on the Myeloma 11 trial, I have not been offered this, as my medical team seem to believe that the chemo I am on (PAD) is currently working well and there is no reason to change things at present. Cycle 2 starts next Tuesday, one day at a time and think positive at all times.
One other thing I have done in the diary is to set targets of when I wish to achieve things, such as getting back on my bike. I am currently in a wheelchair as I can only walk approximately 20 yards without needing to 'listen to my body'.
I have booked with the medical team a physiotherapist, to see if I can advance my activities without affecting the medication I am on such as the Zometa.
Again good luck with your day to day challenges.
Hi Tom, nice to meet you.
I am also on Zometa as I have quite a lot of skeletal issues.
Can I ask are you experiencing any pain with the Zometa?
The reason I ask this, is I am getting a lot of pain in the lower back area.
The medical staff have said this could be a combination of the chemo I am recieving, which is PAD, as unfortunately when I was given CTD, I had a quite nasty rash appear, due to the Thalidomide drug. So they dropped CTD and moved me onto PAD.
PAD is a combination of Bortezomib (Velcade), Doxorubicin and Dexamethasone, I have just finished my first cycle. At the moment I am struggling with a couple of the drugs, tiredness, sickness, lack of energy.
But it is early days but I have a great support network of family, friends as well as a great medical team behind me, so I am extremely lucky and absolutely determined to beat this, as I want another 20 years, on this planet with the woman of my dreams, who I am due to marry this year.
Thank you for positive vibes and as you say onwards and upwards.
Hi Heather, thank you for your kind comments, they have given me more confidence, as there are times when I think, am I ever going to walk again? My partner and I had our first wheelchair day out the other day, I am sure we will get used to it, but I found it very uncomfortable mentally, as I have always been actively fit and full of energy.
Can I ask if you have received a drug called Zometa, I am receiving this as well as the chemo. I have been informed that my bones are very weak as the myeloma is 100% in my bone marrow. The Zometa drug apparently not only fills in all the holes created by myeloma but repairs any lytic lesions, which unfortunately I seem to have several in my vertebra and pelvis.
Once again thank you for your support.
Thank you for you support Mavis. I am back at Clatterbridge on the 18th to find out the results of the radiotherapy on the tumour. Last night was a bad night, I had a full dose of Velcade yesterday, when I came home I fell asleep and woke up shivering and feeling quite poorly. Apparently I was talking absolute jibberish (some might say, nothing unusual about that).
The back spasms also seem to have returned. The Macmillan nurses have suggested some sort of back patch or belt, they are coming in on Monday to give me more information. I am finding it difficult getting out of a chair and walking any kind of distance due to the pain the in lower back region, so I am very keen to see if the tumour has altered in any way, as the medical staff seem to think this was the main reason for the spasms, your comments about the treatment you received have helped, once again thank you for giving me hope.
Hi Eve
Sorry I have not replied for a couple of days, not been too good unfortunately, seem to be struggling with the Velcade at the moment.
Congratulations regarding yours and Slims remission news, gives me, and I am sure many others more incentive and confidence going forward.
In answer to your queston about PAD.
PAD is Bortezomib (Velcade), Doxorubicin, Dexamethasone, plus I am also on Zometa.
Last week my chemo was placed on hold as my previously clean liver suddenly produced AST and ALT levels of over 750 (safety levels 40). At first it was thought to be the Velcade, but after speaking to the manufacturers to check records the team at Halton tracked it down to the Doxorubicin. Gladly this week my levels started heading back in the right direction and on Tuesday I was placed back on the Velcade.
I am one of these people who wants to know the levels of every blood test I have and the brilliant team at Halton not only provide me with the scores but we sit and talk through the levels on everything from white cells to para proteins.
I know this might not be for everybody but I believe in more knowledge less fear.
If I have a dip in my white cells then I try to focus on the positive results in the para proteins. This way I leave with a cup half full instead of half empty.
I know I have a long and difficult journey ahead, but I am very lucky that I have found a brilliant medical team at Halton and I have an amazing partner and wonderful family and friends.
One of the things I did not realise, when I was in Warrington hospital, was that when you finally arrive home and become an out patient, there is another battle on your hands as well as the cancer and that is how the illness affects your relationship with your loved one.
Suddenly her world has been turned upside down and she is now caring, almost full time, for a man who was up until a few weeks ago, very independent. She has also lost her own independency and it is taking us some time adjusting to our different lifestyle.
Jaqui and I have been together for 17 years and as we have both worked full time, we have never spent 24 hours a day together.
Currently, due to the pain, we are in seperate beds.
Frustrations arise because neither of us know each day what condition my body is going to be in and how much I can offer the relationship, on that day.
How far do you push your body whilst on chemo or radiotherapy? We are told to help the drugs by regular movement, but how much damage am I doing to my weak bones? Listen to your body seems to be the only answer anybody can give.
We are both learning more and more each day, and I suppose that is all we can ask for at this stage.
I believe my job is to try and stay mentally positive and let the medical teams handle the rest.
Thank you for listening Eve.
