This topic contains 19 replies, has 9 voices, and was last updated by 
adamsp41 12 years, 10 months ago.
Hello everyone, this is my first message on the site. My name is Glenn and I am 54 years of age. I was diagnosed with Multiple Myeloma on the 22nd November 2011 and was also informed I had a tumour attached to my spine, lytic lesions on several areas of my skeletal frame and that the Myeloma was 100% in my bone marrow, creating holes in my bones, and therefore my bones were weak and could fracture easily. At the time I could not understand, I thought I had just pulled a muscle as I was cycling 30 miles a day a couple of times a week and suddenly after taking a blood sample I had a cancer with no cure.
The confusion turned to fear as I had no knowledge of this illness.
Then the cavalry arrived and explained the road ahead and the battles we were to face.
I was immediately sent to Clatterbridge for radiation treatment on the tumour and began CTD chemotherapy for the myeloma. Unfortunately, I had a bad skin reaction to the Thalidomide drug, and now I am on PAD chemotherapy.
It has only been a few weeks since the diagnosis, but with amazing support of the people who have been taking care of me at Warrington, Clatter bridge and now Halton hospital along with fantastic family and friends, I have now become a lot more optimistic and positive about the possibilities going forward. I am still experiencing lower back pain problems and find it difficult walking short distances unaided, but the spasms have gone and hopefully when I get the results later this month the tumour will have gone.
I am sorry this has been a bit long, but I was trying to show anybody who has just been diagnosed with the right support and knowledge the mental battle can be overcome.
Good luck to anybody experiencing similar problems.
Hi Glen
My name is Eve I know Clatterbridge ,good hospital for Cancer,going back years live in the south now.
It is a bit of a shock to the system,CTD is the first chemo ,never heard of PAD but there again my husband is on Myeloma X1 trials so next chemo was Velcade,but it is a bit of a post code lottery.My hubby is still trying to get Remission,did have 80% Myeloma in Bone marrow plus tumour on spine and lesions on skull and should blades ,has reduced BM to 10% with Velcade.
Nice to see you sound so positive,its a long journey,we have been travelling over a year,hubby has had a few blips along the way,good luck on your journey Eve
Hi Glen
Welcome to the site that we all say we'd rather not belong to!!! What an upbeat post in view of all you have gone through in the last couple on months. I think we'd all say that a positive attitude really helps. although we'd all admit to down times with this dreaded desease that most of us had never heard of.
Do hoped the radiotherepy on the spine is successful. I had to have an operation to remove a plasmacytoma from my spine as it had wrapped itself around one of my vetebrae and was squeezing the spinal cord so that, finally I couldn't walk. Fortunately it was a success and I am now able to walk, but still with two crutches. In my case I had put the increasing pain and disability down to arthritis. I think that it is the trouble, no one thinks of myeloma as first diagnosis.
It is good that the chemo is bringing the numbers down. I do hope you get into a full remission.
All very best wishes.
Mavis
Hi Glen
As someone of similar age and presentation (tumour on spine caused spinal cord compression, and could hardly walk) abou 18 months ago, I thought you might like to know that I am now 6 months post SCT and felling much better. Walking several miles easily and without pain or sticks. Radiotherapy helped no end. Was on ctd for some time, and altho it was no picnic, it did the trick. Hope you continue to improve and, like you say, stay positive(altho not always easy!:-) Look after yourself!
Heather
Hi Glen
I wish you well in this journey I was told in jan 09 I had MM went on 5 courses of CDT (done ok ish with it) and had to pack in work due to being tired and weak had SCT in December 09 went back to work on light dutie's and all the treatment i am having now is Zometa infusions every four weeks 😀 and when that stops (soon I hope) then I will be treatment and drug free 😎
Good Luck on the Journey its well worth it
Tom "Onwards and Upwards" 😎
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.
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 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.
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 Glenn
As for pain? well I have a bit of pain but am sure it isn't down to the myeloma :-S might be just old age as all my bloods (well thats what the tell me) are Ok, only effects I had with the Zometa was a flu like symptom for a few days after getting it infused :-/
I also have a very supportive Family three grown up sons and soon to be born (april time) our 6th grandchild 😀 one of our sons Craig (phase three) took my fishing gear to his home saying if you want to go ring me and i will take you and carry your stuff for you, other one Lee (phase one) took my hedge trimers and said if you want them cutting I will do them I am taking these so you dont try and do it yourself, Jamie (phase two) has took down a lot of the hedges and replaced them with a large fence, so as you can see they are making sure I dont or wont need to do them again 😛
The the Wife (young bride) Elaine is my rock and she knows when I am tired and weary and she drags me home from the pub before I fall asleep lol.
You may Joint the "Onwards and Upwards" mob am sure you are ready for it 😎
Tom "Onwards and Upwards"
Hi Glenn
Altho all our situations are different, we all face similar problems. I find it hard to believe the difference a year has made to my level of walking and pain. Someone who I met recently didn't recognise me without my stick! Being fit previously will help a lot, as I wish I had been fitter, and am trying to increase my fitness now. I did haveZometa prior to my SCT but they have not re-started it again. Am going to question why not at next appt with consultant, as it seems that the recommendation is for at least two years of it. I must admit I felt ok on it. Also had Velcade prior to ctd, which also seemed to suit me, but the effects on my levels diminished so went back on Ctd. Interestingly, despite ( or perhaps because) of my background, I don't want to know too much about my levels etc. Just enough to know what's happening. We are all different, thank goodness!
My husband has been wonderful. It is so hard for loved ones because I have always been the capable one, and suddenly I felt useless. It is frustrating and can make you quite grumpy at times! I had to reassure him that its me and the illness that I am grumpy with, not always him! We have held together as a team and are closer than ever now. I am back to being capable( or is that bossy?!) again!
. Keep on battling. Let people look after you, and rest when your body tells you! It's a roller coaster ride, but well worth the journey.
hello Glenn
I dont think we ever really get over the shock ''why me '' I am a bit older than you I retired early one day ok next day in hospital with renal failure double pnuemonia and MYELOMA that was three years ago I managed with the thalidmide and have been in remmission for nearly three years I didnt have an SCT( my choice )as my kidneys were so bad. I was in clinic the other day talking to a man who was diagnosed in 1997 he had an SCT which lasted for nearly five years since then he has been on medication only and none except zometa at the moment so that cheered me up no end
Good luck with the treatment
Love Jo
Hi Glenn
I originally am a scoucer,so I know that Clatterbridge from the start has all ways been a designated Cancer hospital,so you are in good hands.
Slims on the Velcade with Dex and Cyclophosphanide. VDC for short,as you progress with Zometa you will find you can do more things,iam all ways nagging Slim about doing to much,his answer is I have to try to do it.so do not worry about your partner its only because she cares because you have cancer does not mean,the usual disagreements do not happen,in fact I think you will find,it gets worst because as a carer you get so scared,you want to protect your partner.
Do not forget the Dex causes all sought of mood swings,I had to keep reminding Him,he was having a dextatude moment plus the Velcade made him very anxious ,he could not explain why so you do have to take all this into account.:-0
Without sounding awful,I feel my life has been snatched away too,and I do occasionally feel sorry for myself,I consider that very normal,but it does also make me feel guilty,so there is a lot of feelings you do have to come to terms with:-(
At my worst I found myself very angry or tearful so went to my doctors,and yes I pop a pill mainly to get my emotions under control,you cannot keep shouting or crying when things are bad and things are going wrong.
So just remember all these things are normal,I now go out,every day on my own,walk the dog,coffee,or lunch,chat with a friend,I also meet up with Jenny on this site who,s husband has Myeloma and that has been a bonus,there are not many people in Deal my home town with Myeloma and the nearest support group is 60 miles away.
If you have a support group near you my advice would be for both of you to go,even if you do not think you could join something like this.It does help your wife might find someone to help with her burden.Love Eve
Hi Glenn
I turned 40 this year,when I got brought into hospital last year i had compression on my spine which could of stopped me using my legs.(I had just been mountain biking and walking in north west Scotland)Had radiotherapy and now on RCD pathway (Myeloma 11 trial).Upper back still aches but Thats about it and went into remission in December 11.You are right about the medical team to have confidence in them and to tell them anything which changes or is on your mind.
Its as you say about being positive and listening to your body some days you can achieve more some days you rest more.
I am on the Zometa and go once a month to help the bones,take care and keep active.
cheers Paul
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.
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