[TerryMGParticipant]

Hi, I am Terry and this is my first post. Sorry if it is a bit long but I want to take you down the path I have been so that I can seek guidance from these who have been before me?

In June 2010, I was diagnosed with MM and during further tests I was put into an MRI scanner in a position that really hurt my back. When I came out of the scanner I could not walk and was admitted into hospital with MM and spinal cord compression. I had lesions the length of my spine plus 2 tumours one at the top of my neck and the other at the base of my spine. These were zapped with radiation over a course of 10 days but the first session took the major pain away from my back. I was put on a course of CDT but I could not walk. I became a man of 2 halves the Myeloma and the spinal cord Compression. Dexamethasone was good for me during the monthly cycle along with other medication. I could work out my good days would be Tue/Wed /Thursdays and tried to arrange life around the good days. By positive metal attitude I worked on my legs which has been hard going at times. My Igg was 69 when I was admitted into hospital but by the 3 rd cycle my Igg was 6. My local hospital in Sidcup referred me to Kings College Hospital in London and in October 2010, I saw Professor Schey who diagnosed that I had DVT so I had 6 months of injecting with Clexane. I had a change on medication and Thalidomide was stopped. A week later I felt like ?rubbish? I had a large lump appear on my lower back and my left side ribs felt like someone was trying to put their fingers in my rib cage. So I took my self to A&E and was admitted for 5 days. I had another MRI and saw a copy of the report which stated that the lesions down my spine had gone as had the tumour at the top of my neck. The tumour at the base of my spine was greatly reduced and had almost disappeared. I started monthly ?bone hardening treatment? with Zometa. All good news and very encouraging.

In December 2010 I again saw Professor Schey and I was recommended for a SCT and put back on Thalidomide. Between December and March I had various tests which were all good and I had been fit and active before MM was diagnosed. During this time I still had the lump in my back come and go and the LHS rib sensation ever present. In March had my stem cells return which I think I tolerated the procedure very well.

At the end of May 2011 the Hickman line was removed as I was in remission and my blood levels were good. However, soon after the Hickman line was removed I got 3 lumps appear. One in the neck on entry, one at the ?Cuff? site in the chest and one on the exit of the line. By June the cuff site was getting quite big and the other two sites the size of marbles. At King?s Clinic they said they would arrange a biopsy. But the cuff site was getting bigger by the day so on 3 occasions I took myself to the out patients to point out I had not an appointment for the biopsy and the cuff site was the size of an egg. To cut a long short I had an operation was more serious than they thought. All the indications was that the lump was this ?traumatic bruise" as there was not any indication that it was connecting with anything underneath the skin. However, it was not a hematoma but a Myeloma tumour.

The good news is that the lump at the base of my spine has gone hard and is reducing in size. This means I can bend more easily. I have gone from a wheel chair to Zimmer to using a stick and have basic use of my legs again.

The not so good news is that my ribs are getting worse and I have relapsed.

Kings have referred me back to Sidcup for Velcade.

Having read my diatribe (Sorry). What questions should I be asking about my treatment? Is Velcade the drug of last resort??? And so on??

[eveParticipant]

Hi Terry
First may i give you a welcome to this site,I am a carer to my husband but you will find lots of different people on here who can give you advice and boost you up when you need it.
I can only tell you about Velcade but others on here have been on a journey with similar problems,
may I say Velcade is not the last resort,My husband was put on it after CTD as his response was not as good as expected.Velcade is an injection which can vary in quantity my husband has 2.3ml plus cyclo and dex.based 2weeks on 1 week off.all though some people have lots of side effects my husband has minimum side effects.It is the second line of chemo.
He is doing well on this,but we will not know if its working until he has bone marrow taken as in his case it is the only way to measure if the MM has reduced in bone marrow.
If you go into the library on this site there is a leaflet on Velcade:-)

It is just like any other chemo,it works for some,if you read Dai,s progress on Velcade it might help also aPeter who has just joined the site had a course of Velcade and has been clear for 3 years so it does differ.
So keep strong there are other people on this journey with you,Eve

[gina45Participant]

Hi Terry, welcome to the group. My mum has myeloma and she has had it since 2009. You will get lots of support and advice from the lovely people on here. I know as i have had lots. Im sorry that you have relapsed. My mum at the moment is on Revlimid and Dex and this seems to be working for her.hopefully there will be lots of options for you to take and you will soon be back in remission.
You take care
Gina x

[BADGERParticipant]

Hi Terry

so sorry you have had to join this group I cannot help you with velcade as that will be the next drug i am put on when i need it I like you will be looking for advise I have been lucky so far no tumers but I have had chronic renal failure due to myeloma
Love Jo

[TerryMGParticipant]

Hi Joe,
Sorry to hear about your Kidney failure what a bummer. 😛 I was aware this could happen when I was first ill so I have been very conscious to drink gallons and gallons. As the lower back tumour made be semi paralysed from the waist down, learning walk again to go to the loo was one of my priorities!! 🙂 🙂 🙂
Hi Eve,
I tried to join the site some time ago when I was feeling better. However, for some reason I could not get it to work and I gave up. 🙁 Even though I have relapsed I am a lot better than this time last year.:-) It was reading Peters post that encouraged me to try again. What I do not understand is that I am given to understand you will know if Velcade works after 2 cycles and you are given 3 cycles up to a maximum of 8. But if Peter had been on it for 3 years how does this work?? I have read the info guides about Velcade and Rev what is the decision to have one over the other???
When on CDT I knew the T was working as within ½ an hour of taking it as the positions of the tuners etc. would throb which to me was a good sign! I had 5 cycles of CDT and except for one of the many components within the 40 plus one was 0.01 out of range. 🙂 I was not on any Chemo Stuff from the beginning of January. The Doc?s & everyone said how well I looked. 🙂 To me I thought I had the Myeloma cracked and the SCT was ?maintenance?. So my efforts we put in to learning to walk again. So for the myeloma to come back after such a short time was a disappointment. However, my motto is: Failure is not an Option (from Apollo 13)
Hi Gena,
Thank you for your post, do you know why your Mum was put on Rev and not Velcade??
So thanks everyone for letting me in on you journeys as well?.. TTFN xxx Terry

[tomParticipant]

Hi Terry

May I be one of many to welcome you to this great site:-D but sorry to see you here:-(

Reading your post am sure you will sail through it all and a lot of it as you know is S**t :-/

Me I had lots of CDT and a SCT (December 09) and am doing great only on Zometa now 😎

Good Luck Terry

Tom "Onwards and Upwards" x

[gina45Participant]

Hi Terry, My mum was on velcade but only had 2 lots of treatment but it affected her heart and kidneys so it was not right for her. But i have spoken to others and its done them really well, so it all does depend on the individual person
Gina x

[brochoParticipant]

Hi Terry crikey you have certainly been through the mill in the last few years yet you sound so positive and upbeat which I am sure has a lot to do with keeping well I was diagnosed 5 years ago after a year of agonising back pain which meant 3 vertebrae were eaten up Amazingly I did not have any problems walking much to my doctors astonishment . I did have a spinal reconstruction though and most of my spine now is metal plates and rods! At the moment I am on my 3rd relapse with a very large tumour from my spine up to my ribs This was so painful until a short course of radiotherapy sorted it out ! I will soon be going on Bendamustine to sort the myeloma out Velcade is used at first relapse and Revlimid is often the one used after that but as my doctors have told me there are ways and means in getting these drugs if you need them so that your needs are more important than govt protocols As far as side-effects Velcad was not too bad although constipation was a big problem for me , my advice is take laxatives from the start The other side-effect to watch pout for is peripheral neuropathy so tell them as soon as if you have any pain or tingling or even numbness in your hands , calves or feet They can often reduce the dose without it being less effective but if you dont tell them straight away the neuropathy may get worse I am not sure what questions you should ask really but be as open with your doctors as you can and let them know you would welcome the same from them , dont forget its often easier to talk to your specialist nurse about any worries between clinic appointments Good luck on your treatment and I hope you get the stregth back in your legs Who knows maybe we will be sponsoring you in a marathon next year!! best wishes Bridget

[eveParticipant]

Hi Terry
All the chemo differ in how you take it right across the country except if you are a part of a trial,Slim is on Myeloma M1 trials.So it is closely monited and you basically cannot divert treatment.so now on CVD.

Peter had a course of Velcade and then 3 years remission and still going strong.
Slim is doing full 8cycles as light chain readings show remission but Myeloma had gone up to 80% in bones only way to tell if Velcade is working is sample of bone marrow,!!
When Peter posted,it gave us a lift,as Peter is 3 years without any treatment,it is a big boost for us:-)

Hope this is helpful to you.Eve

[mhnevillParticipant]

Hi Terry

Have been away and just read your post. Like everyone else I am glad you have now found out how to post to this site. I know you will find lots to help you as well as adding to all our knowledge too.

I haven't any experience of Velcade, but can empathise with your efforts to regain your walking ability. I am currently on two crutches with great difficulty to stand up, but i am focussing on it like you did.

All very best wishes.

Mavis

[GillParticipant]

Hi Terry and Welcome

If you are attending Sidcup you cannot be very far away from us we live in Orpington. Stephen (husband with mm) was diagnosed in 2008 and has relapsed after his second SCT failed. He is under Prof Schey at Kings.

I am not very up on the success rate of all the different drugs, but I don't think velcade is a last resort. Stephen did have velcade but starts on revlimid soon. This used to be thought of as an "end of life treatment" and not sanctioned in a lot areas at one time. But Stephen's oncologist is saying that there are another couple that can be tried even though his prognosis is not too good at the moment.

Good luck Gill

PS I know very little about the drugs used but the reason I mentioned revlimid is that when Stephen's mm was first diagnosed there was a huge hoo ha going on regarding allowing the use of revlimid when needed. Typical NHS too expensive for the average extra time it can bring.

Good job things like penicillin and children's vaccinations got through wasn't it 🙂

[OutdoorsPaulParticipant]

Hi Terry
Well you are a seasoned professional compared to me as I have only just been diagnosed din August! with MM.I to have tumor upper back/lower neck which caused spinal compression.Taken straight in to Hospital with concerns about losing mobility and bed rest.Had radiotherapy and tumor area which seems to have removed most of the pain currently.Have lesions to left side of ribs.Now on Myeloma 11 trial and RCD pathway and Bisphosphate in injections once a month.Movement is good and continue to duo some daily exercise to maintain muscle definition in legs.Sounds like you are a positive person which as I am which Is half the battle.Sorry cant help with some of your questions but welcome to the site and everyone is very very helpful and you will get some good support.
always happy to help where i can
cheers Outdoors Paul
Positive stuff!!

[DebsParticipant]

Hi Terry,

Just to say that velcade definitely isn't a last resort. I was diagnosed in 2009 and started treatment in 2010. I started on revlimid but that stopped working quite quickly and I was put onto velcade.
It worked really well for me and brought my pp down from 28 to 4 at which point I had an SCT. The only thing I would say is please listen to what Bridget said about neuropathy. I had it and didn't think it was too bad…I kept going because I thought I should wait till it was bad enough to stop. I then stopped but it got worse, and 4 months on, I still have it. As Bridget says, they have options if you do get it so tell them and be honest with them.
I really hope the velcade works its wonders for you
Good luck
Debs x

[PerkymiteParticipant]

Welcome to the site Terry, reading your post I feel a bit of a fraud!!

But then I look at the xray of the titanium in my neck holding up my head he he. Even Doctors are amazed that I have got so much movement back. I was diagnosed in Jul 09 and broke my neck getting out of bed. I had a massive tumour which ate the 4th vertebrae for breakfast.

I am 10 months post SCT and apart from a heart tablet and Loron (bone strengthening tablets) I am on no cancer medication. Paraprotien at present 2.1 and feeling good MM wise. So, I have not at present been put on any of the other drugs that are talked about so sorry cannot help personally.

Kindest regards ? Vasbyte

David

[TerryMGParticipant]

Hi Tom,
I was hoping to be where you are now just on Zometa. I think all my doctors are genuinely disappointed at what has happened as everything was looking like great and going according to plan.
Hi Brigit,
Thank you for your very useful advice. 🙂 When I was first diagnosed I was told that my bones were too weak to have any surgery as the screws would just fall out!! I am very aware of the peripheral neuropathy from Thalidomide, as I think I started to get that in October (started in June 2010) Tips of my fingers on both hands and ringing in the ears. But have taken on board everything you have said. Interestingly the front of my carfts as well. The thing is with the spinal cord compression it is difficult to determine if it is the tingling you get with that or the peripheral neuropathy. Tined prunes on special offer at Tesco are a great help with CDT. 🙂 🙂 🙂 I have never had a specialist nurse? Sidcup Cancer ward was closed down at the end of 2010 🙁 as I was being transferred to Kings for SCT. Sidcup only have out patient?s dept. 3 days a week, that is where I have my Zometa.
Hi Jill,
From your picture, I think I saw you both in the waiting room at Kings on Wednesday 31 August. Or have I got this wrong?? You must be ?round the corner? from me as I live a mile from Queen Marys. Which hospital are you under? Farnborough? The Sidcup Cancer staff was to be split up between Farnborough and QE at Woolwich. Last Wednesday Proff Schey was thinking of putting me on a trial drug but it would take several weeks to organise so after some thought he felt that it was in my best interests to go onto Velcade asap. I know there had been conference call between Sidcup, Kings, Gays & St Thomas last Tuesday afternoon. I found out from the Mac Millian people at Kings that the surgeon who took the ?Hickman line lump? away was the director of surgery at Kings the real top top bannana. He telephone Proff Schey to make certain he saw me and not one of his staff on Wednesday. 🙂 So I cannot complain that I am not seeing the top people in their field. We plan to go to the info day in London this month.
Hi Paul,
I think we sound like similar people. If you have not been there how can anyone really know. I personally did everything I could. I got myself to the specialist physo?s who deal with MS etc. 🙂 and not the general ones. They were very good for the special exercises and advice how far to push and when to stop. Listen to your body. Before MM I was always doing something so found it frustrating to stop and rest. With pain I tend to use mind over matter. But this may not always be good for SCC. I refused all pain killers when in hospital as I then could feel where the tumour was, this allowed me to put my body in a position in bed so that I did not do any more damage. I assume you are a walker from your user name. I have written too much already but I think we should start another thread at some point and you sound a similar case to me with issues in the same places. The best thing I did was to but a 4 wheeled stroller with a seat. This got me about in the house, then the garden, then walking around the streets. If you feel tired I just stopped and sat down for a few minutes. Best £60 I spent. [b]But beware there are many similar things on the market that are not so good. [/b] I would be privledged to give you some advice on them if you think this would help you.
Hi to everyone else,
Thanks for your encouragement. One of my MG friends in Holland sent this to me yesterday:
Count your garden by the flowers,
never by the leaves that fall.
Count your joy by golden hours,
don?t remember clouds at all.
Count your nights by stars, not shadows.
Count your days by smiles, not tears.
And on every birthday morning
count your age by friends, not years.

TTFN?. Terry
(Failure is not an option)

[Author]

Posts