Hi Everyone,
I do not go onto our site very often. I attended the London Info Day soon after I was told I had relapsed within a few months of my SCT and before I started Velcade. The talk from Prof Gareth Morgan was very interesting to me and I could better understand while some therapies work for some people and not others. I spoke to him and his colleague who know my consultant at Sidcup. I volunteered to have my DNA taken to add to the sample numbers which they were asking for. However, this has not happened yet but I would like to contribute. By luck at lunch I sat opposite Dr Jacob Laubach who is doing similar work in the USA at the Dana-Farber Cancer Institute (and a colleague of one of the men reporting on one of the 3 ASH video clip mentioned else where on this site). They now do the DNA test on every new patient as this does help with treatment as we need targeted treatment as ?one size does not fit all?. Diagonally opposite to my left was Dr Rakesh Popat who is Prof Schey?s counterpart in University College London. On my left was a lady from Luxemburg who is head of a team who are studying treatments for Luxemburg and Germany. There were many representatives from Europe at the Info Day which was very worth while. I was very encouraged about what was happening and how everyone was sharing information and experiences at a time when I was not certain what may be happening to me next. We did not spend all the time talking about Myeloma as MG?s did get into the conversation and they told me about their MG experiences too. Now at Velcade end of cycle 2, my Igg 6.7 from 34?.. Have a good Christmas?.. Terry
🙂
Hi Eve,
Thanks for the explanation of the TLA?s (Three Letter Abbreviations) ?.. At the two hospitals I attend they call it this procedure: Bone Marrow Assessment or Bone Marrow Aspiration. I hope Slims results are positive as we all know what it is like to have these BMA?s or B?s so we all want good news for our troubles. Hope it is good news for you for Christmas?. Now off to Sidcup for Cycle3 week 1 + Zemeta?. Terry (Failure is not an option)
Hi Mari,
I think my situation is very similar to Steve. However, as I learnt from the Infoday in London, Myeloma is a very individual condition. Therefore current treatments are ?are one size fits all? do not work for everyone. The good news is that the work being done on DNA sequencing and where in the DNA helix the Protein has attached to X&Y chromosomes is giving researchers an indication which drugs work best.
I had spinal cord compression and had to learn to walk again and was not able to drive a car for nearly a year. This for someone who?s hobby is restoring sports cars was a big blow. However, having my SCT in March and then told everything was Ok in May I thought I had cracked it?. Not so! When the Hickman line was removed soon afterwards I started to get a lump at the Hickman line site which got bigger. (see newcomers: Hi I am new Help – Now that I have relapsed). Most, but not all of the tumour was removed in a 2 ½ operation in September and I started Velcade in October. So I have not had so much remission time as Steve. When I was at King College Hospital they encourage you to understand your results. When I went into relapse, I put any results I had into a spread sheet and compare them with those when I was told I was in remission. I noticed that my creatine were creeping up. I increase my fluid level by 1/3 and they came down again. On top of everything else I do not want to get kidney problems and I am very carful with walking as I do not want to break any bones. The kidney failures are caused by the breakdown of Calcium but the very fine stuff blocking the fine tubes within the Kidney. So by drinking a lot more this should really help.
With my spinal cord compression I have ?pins & needles? from the waist down so PN is more difficult to detect. However, Thalidomide gave me more issues in this area than currently Velcade does. I also read recently that hot baths help to reduce the effects of PN. So since I started Velcade I have a very hot bath every day. This and Reflexology has really helped to get feeling back in my feet.
Different Hospitals seem to have different protocols for Velcade
At Sidcup there a four of us who started Velcade on the same day.
We have Velcade on day one with:
Dexamethasone on days 1&2, 8&9,15&16, 22&23
Cyclophosomide on days 1,8,15 &22
Co-Trimoxazole on Mondays Wednesdays & Fridays.
5th week is a rest week but a clinic is arranged for the same day as you would attend for the Velcade. So it is a 5 week cycle.
Within an hour of having Velcade I get throbbing were I have had Palasmcytomas. My chest is though someone has punched me. My back, leg and ribs ache but I take this as the drug is working. My platelet count has dropped to quite low level by cycle 2 week 3 but it was just enough for me to have full strength for the 4th week. PN does not seem so much of a problem that the side affects when on Thalidomide. I wish to have full strength all the time they are allowed to give it to me. The others seem to be fine to. One could not tolerate Thalidomide but is fine on Velcade.
Sorry but I do not know what BMB is. I go on something called Igg which is within the total protein. When first ill it was 69 but went down to 6 within 3 months. On relapse this was 34 upper limit parameter is 18. My Igg result was not available last week but I will be surprised if it has not dropped.
I hope what I have written gives some comfort to Steve.I start cycle 3 tomorrow,
Regards Terry
(Failure is not an option Apollo 13 space mission.)
Hi Debs, (and thank you everyone on this thread as this has been very useful to me)
[b]General[/b]
Terry MG here?.learning to navigate around the site. Does anyone know the difference it ?clinking in the reply? after someone?s post and the one at the bottom of the page.. brown line??
I have tried to contact [b]Gill[/b] (& Stephen) off line via their picture but I do not know if this has worked?
Still getting to learn the TLA?s ([b]T[/b]hree [b]L[/b]etter [b]A[/b]bbreviations)!! I would really like to know about TENs? what this is. What do you with it? How does it work etc?
[b]Me[/b]
Started the first cycle of Velcade yesterday so very interested on other peoples experiences as I had DVT with Thalidomide. Dr?s at Sidcup said that there is normally less side-affects with Velcade than Thalidomide but I must look out for side effects. I stated that with my SCC (spinal cord compression) I already have ?pin & needles? in my feet and some fingers so it will be not so easy to detect the first signs. If things are Ok to cycle 2 they will change the day to Tuesday pm so they can come and see me after the morning clinic. 🙂
Debs
I really feel for you Debs, and [b]rant way!!!! [/b]I had very minor frustration over DVT socks between Kings in London and the GP. In the end I had what the GP could supply which we so tight that they cut blood supply to my legs!!! A complete waste of NHS money but managed to scrounge some from the friendly staff at Sidcup. But my major frustration was when the Haematology doctors at Kings could not get past the ?clerical? staff making appointments for the King?s surgical team even after the Radiologists put on the bottom of the scans and ultrasounds said this was urgent! So there was an 8 week?s delay as I was originally put on the normal referral list lead time. Meanwhile my ?hickman line lump? went from a large marble to the size of an egg!!!.:-( 🙁 🙁 So I know how you feel when you are waiting and build up to an appointment only for a BIG let-down. As soon as the Surgeons were involved they were quick to act and Director of Surgery was in direct contact with Prof Schey. 🙂 🙂 🙂 So I cannot complain about any of the people who have dealt with me direct, only the ?faceless officials?. 🙁
[b]Reflexology[/b]
My local McMillian centre at Sidcup pay for up to 6 treatments for Reflexology. They will not do this if you have DVT so I think this must be the same as stated for the TENs machine?.so does it massage your feel?? Anyway, I will pay for more session as I think it was really worth it. I found that the benefit not only worked just after the session but became better over the next 3 days in time for the next session the following week. This was the best routine. She said after the first session she could tell my circulation had improved. 🙂 The feeling of walking on stones has changed to feeling of sand and sponge.:-)
Not Listing>:-(
Again this is very frustration when you know you are not an idoit! Apart from above ones mentioned. The left side rib thing has been going on since LAST October. Sidcup can see something but say difficult to define and some in Kings have seen things. But they say when you have xxx done you will feel a lot better. Later I still have the rib issue getting worse although my wellbeing is much better. So I am having to insist that having everything else I would not bring the rib thing up month after month if it was not becoming an issue and that some doctors have seen or felt something and others cannot. I think being between to hospitals did not help but Sidcup seem to be on the case. I am always polite but firm and on most things I have usually get exactly what I wanted.
[b]Clexane injections[/b]
When I was prescribed these for DVT I was told I would be on Clexane for 6 months. Kings gave me 10 days supply and the rest was from the GP with no problems?. Only the socks as above. So the does seem some differences around the country. BTW (By the way) Sidcup have recommended that I use DVT socks at the start of Velcade so I scrounged some more from the good people at Sidcup after telling them the story above.
[b]Slippers & Socks[/b]
Margaret has started to call me EGOR.;-) Because with scars in my body and neck from the Hickman line removal thing which had a pump thing attached, for the first few days. Added to which I have had a ?face shift? so the skin under my chin has been pulled to the right and the way I walk with SCC!! So the thought that I might need pink socks is amazing!!!! 🙂 I will experiment with the slipper thing as for a few weeks the left big toe sometimes painful and I do not want this to get worst.
Have a good week end my MM friends?. Terry 🙂
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
Hi Etta & Husband,
First like you I have only just joined the Forum at the weekend. What has been written before me is very sound advice but I would like to add a few things.
1 My GP told Margaret and I not to look on the internet as a lot that comes up is way out of date. We only looked up Myeloma UK after 6 months on the advice of Proff Schey, by which time we had learnt a lot from those treating me. You will have a lot to take in at first but read in small bursts. How do you eat an elephant?….. A little bit at a time!:-) 🙂 🙂
2 If you are on CDT you will have good days 🙂 and bad days:-| . Different medication is taken on different days and in effect you get rest days during the cycle. I put my monthly cycle on a spreadsheet with space for notes. I was soon able to determine that Tuesday to Thursdays would be good days for me. The other days could vary greatly so listen to your body. Dex made me hypo in my head I could do anything but my body would not let me do it. I also did not sleep so well on Dex days as my brain would not switch off.
3 The first time I had Zometa I felt like you. I told the hospital for the next time and it was given it at ½ speed and I have always been OK after that,:-) so ask next time ask if they will give it to you slowly.
4 Re the injections. I had a friend who was a big Policeman taking the same injections as me and he was finding it difficult as he was tending to stab himself. If yours are for the tummy may I suggest the following technique? Keeping 2 inches away from your navel, just press the needle gently against your skin. The skin will dip then the tip of the needle will go into the skin. Then gently push the needle to the body of the syringe and then push the plunger in. When the syringe is empty pull the body out quickly and do not rub the skin. You should hopefully end up without any bruising.:-)
I hope what I said helps, we all know what you both are going through at present but once you get into routine things will look a lot better. My best wishes and we are with you??. Terry
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)
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
