[GillParticipant]

Hi Terry

We must indeed be almost neighbours, as we live in the last road on the right at the bottom of Poverest Hill. We are about half way along where the semis are. (The one with the iron gates).

Stephen hasn?t attended Kings since his last SCT so it was not us you saw. Mind you I just love the idea that we have doppelgangers that are the same age as we were in that picture as it was taken about 5 years ago and, not only are we older in my case fatter and greyer.

Stephen is also under Prof. Schey. Although he has only seen him once or twice I know that Schey attends a case meeting on a Friday where Stephen may be discussed by his oncologist, radiologist etc if necessary.

Stephen is seen at Chelsfield Hospital but has also attended Fawkham Manor, Darenth Valley and Maidstone. His oncologist is Dr Tariq Shaffi and Dr Visioli organises his radiology. Stephen has never been allocated a "specialist nurse" either and the Mac Millan staff have never been in contact with us. We do have numbers for the Oncologist (both his office and mobile) and the Chemo Nurses and the nurses also have a mobile "out of hours" number so I think Stephen is covered (fingers crossed).

I do hope all goes well for you. Do keep posting I just know you will get a huge amount of support from everybody on here

Best wishes Gill x

PS to apologies to non Kent/London Dwellers us Southerners have taken over the site 🙂

[DaiCroParticipant]

Hi Terry,

I agree with Bridget, you have certainly been through the mill, several times by the sound of it.

My SCT failed after 10 months (I was told to expect 3 – 5 years) so I do understand how hard a relapse can hit you. I relapsed in February/March this year, confirmed in April (on my wife's birthday) with an accompanying Myeloma related tumour (pea to egg in 8 weeks) on my sternum in case I needed proof.

I started my first Cycle of Velcade in May and my tumour completely disappeared in the first 2 weeks of treatment. Velcade is given over a 3 week cycle – mine by infusions through a cannula in the back of my hand – with infusions on the Monday and Thursday x 2 and a rest week before a consult (to monitor and administer any changes in volume of Velcade) and the next Cycle. The good news for Velcade customers is the introduction of subcutaneous infusions… a simple injection in the tummy – just like your Clexane… which I have been taking for the last 3 months (continuing) for my DVT which developed during treatment.

I had 6 Cycles and responded very well. Like Debs I had some bad problems with Peripheral Neuropathy and my Velcade was reduced on the 3rd and then again on the 4th Cycles (from 2.47 to 2.1 and then to 1.47 until the end of treatment).

Talking of which… I was due to have the full 8 Cycles but I achieved CR (Complete Response) sometime in mid-July and at my pre-7th Cycle consult on Monday my consultant informed me that enough was enough and declared me in remission.

So no, Velcade is not the last resort, not by a long chalk. I hope to gain 6/12 months remission from Velcade but my consultant and I have already started discussion on the next course of treatment, Revlimid. She is quite bullish about Revlimid, saying that it is possible to stay on the treatment for years.

Unlike CDT and Velcade, where you take the courses and then hope for a good period of time off treatment, Revlimid is taken continuously (with 'rest' weeks) in tablet form. It works while it works, if that makes sense, and it can (and has – in many cases) work for years.

After that the next course of official treatment seems to be most likely Bendamustine and then there is Pomalomide and my consultant mentioned another new treatment (I missed that particular snippet due to the shock of being told by my consultant to get out and not to darken her door for 6 weeks but my wife Janet picked it up) about to be launched on the world of MM.

Chin up Terry, you have found us and believe me THAT is good medicine. 😎

Welcome.

Dai.

[TerryMGParticipant]

Hi Dai,
Thank you for your nice email and to know the path you have been on. You reply was very structured and phased which was a great help. 🙂 I knew of the web site some 6 months ago but have not contributed for now although we have raised money for M_UK. My chin is always up but our partners go through a lot as well!! It was our 40th Wedding anniversary 🙂 around the time I had STC (married young you know), so we had a party a few months ago when the ?Hickman line lump? began to make its present felt!
Had a good meeting with the Doctors yesterday and we usually have a good laugh! 🙂 🙂 🙂 Anyway, my wife feels a lot better now and she has read your post as well. I start Velcade tomorrow. I think I am a bit unusual in that I think the bone marrow bit is OK ish. But I have lumps in my tummy on left side as well, where I have injected myself with Clexane but the right side injection sites seem to be OK? I also have a lump on my left leg and the end of the 10th rib. Plus the unknown thing on my left inside my rib cage. It would seem that if I have a wound that bleeds a Plasatoma (?) starts. They have been talking about PET scan and Radio Therapy for the area around the ?Hickman line bump? but like you said, I think as soon as I start Velcade they want to see what the lumps do first.
Overall, I am much better than this time last year?.:-) at least I can walk a bit unaided. 🙂 I can drive a car again so have some independence. Managed to do a week?s car rally in June. 🙂 🙂 🙂 🙂 🙂 We were going to France for our first little holiday to see one of my friends who moved out there but the ?Hickman line lump? operation got in the way 3 weeks ago. I will let you know how the lumps go.
I am still finding my way around the site so I have tried to email [b]Gill & Stephen [/b]off line as they must be only 2 mile away from me??. Thanks Dai?.. Terry

[scott9Participant]

Hi Terry

I'm just back from a couple of weeks in Spain and thought I would add a few lines in support. I was diagnosed win mm end Sept last year and was given velcade plus DC in combination. I had a very bad reaction and was too ill to keep taking it. I switched to Revlamid in Jan and had six months on that. I'm now on maintenance therapy and hoping for this to keep me going for a while yet!

Good luck to you

Scott

[tomParticipant]

Hi Terry great Photo you have added and am pleased you are doing Ok

Tom "Onwards and Upwards"

[CarolBradley1Participant]

Hi Terry and welcome although I´m truly sorry that we are meeting here!

You really have been through it I´m afraid haven´t you? I was going to mention Revlimid (which seemed to work ok for me apart from the side effects and it brought my paraprotien level down prior to SCT but I have just read Scott talking about it to you. Might be worth asking about – perhaps one of the myeloma drugs trials?

Take good care of yourself and best of luck with whatever treatment they decide is the right thing for you.

love Carol xx

[Author]

Posts