Hi Dai,
On Friday my Platelets were 18 and my Neutrophils were 1.2 (from 0.9 on Tuesday) My Hb was 8 but this has never been better that 12. I see my Consultant on Tuesday so we will have to see what the next steps are.
Regards?.. Terry MG 🙂
Hi Di,
I am joining your club and having Bendamustine C1 on Tuesday along with Thalidomide plus Steroids (Dex?). I belong to the South East London trust that when into administration. The 3 hospitals involved are to be split up and taken over by other trusts or organisations. The real issues were PFI payments on 2 of the 3 hospitals. I chose to follow my very good consultant Dr Bowcock . They originally turned down funding but she appealed so I am in your club as well. I try to use the facilities at Sidcup to keep this hospital going. So my new hospital is Princess Royal University Hospital near Biggen Hill. This will be linked with King?s College Hospital where I had my SCT. I am currently having Radio Therapy (RT) on my right Tree Trunk Leg at St Thomas?s. So Monday I have a blood transfusion to get my platelets up at Sidcup then off to St Thomas?s for a dose of RT. On Tuesday I have my first lot of Bendamustine then of for more RT. When I was first ill I was on CDT my Igg when from 70 to 3 in 3 months. However, I had spinal cord compression as could not walk so I got DVT. I now know what exercises I can do and I will do everything to prevent my getting DVT?s but I am going to have Klexane injections as well. Most 2012 I had a good year despite discovering I had prostrate cancer, some skin cancer and some other issues. I was back to 95% of normal life then Myeloma strikes back and back to square one. Velcade was magic for me but stopped working for me when I started it again when my leg got bigger (Myeloma in the calf muscle). Lenalidomide did not really work for me too well so that is another reason I will be on Bendamustine. My Igg is currently around 40. So as I keep on saying ?failure is not an option? as I am still trying to restore a rare MG although no real work for over a month now. I will follow your progress and let you know how I get on as well. Like you my veins are rubbish too!!!
Regards?.. Terry
Hi Sarah & Henry,
I have had PN mixed up with spinal cord compression. It tends to be in the feet and hands. I had 6 reflexology sessions from the Mac Milan centre within the local hospital. This seemed to help me with my feet and the symptoms of PN reduced. I then paid for reflexology sessions of my own usually within the rest week of the cycle of treatment it was on. The tips of the fingers do get sensitive to heat but I know my wife?s friends also had the same with chemo for other types of cancer. I found when off chemo ( originally CDT )the PN gradually reduced so I think there is hope that Henry?s fingers are not permanently damaged. I gradually became free of PN but it came back when I relapsed and was put on Velcade. When I was off Velcade the symptoms reduced much mere quickly. I am now on Lenalidomide for my second relapse I do not have PN in the feet only spongy feeling and mild sensitivity in the fingers which if this was all I had to contend with I would be happy. However, I currently have a lot more to put up with so PN is the least of my worries. Good to hear that Henry has full remission.
Good luck and best wishes to you both. Terry xxx
Hi Christine,
I have stopped taking co-codamol as the second cycle of Lenalidomide (Revlimid) seems to have reduced the pain in my ? tree trunk? Right Leg. I have 2 appointments at Guy?s & St Thomas?s on Friday 28th December were I think I will have Radio Therapy on the ? tree trunk?. I do not know what levels Chris has got to but Kings where I had my SCT usually do 3 cycles and then the SCT. In my case I went from an Igg of 70 to 3 in 3 months on CDT and then had another 3 months of CDT while I was being transferred from my local hospital to Kings. I had my SCT in March 2011 but this did not work for me as I got a tumour at the site where the Hickman line was removed. Velcade gave me a good quality of life from October 2011 and I was off it in February 2012. Unfortunately, my levels began to rise again in June with my right leg being a problem. In August I went back on Velcade and the first month my levels improved. But then went the wrong way so I am now on Revlimide. With Myeloma we are all different but this site gives you some idea as to what does and can happen. Good Luck for January. A project like restoring a Motorbike is a good distraction from all this medical rubbish we have to go through!! Have a good Christmas?.. Terry.
Hi Gill,
I do not come on to the site too often. But I have thought about you and Stephen during the year as we never got to meet up even though you must only live a mile or 2 away. I tried to find your house on Google earth but was not certain that I was the correct house.
I was very sorry to hear that Stephen lost his battle in September. I am going through some major issues of my own. But I think it is those that are left behind that have to pick up the pieces have a harder time. I have been encouraging Margaret to join History classes and meet up with friends etc. I do not want her to concentrate all her energies on me and forsake other interests. I do not want her to worry about me so that when I am gone I hope there is something else to occupy her. I do not like people feeling sorry for me as life has to go on. Not as before but you now have to think of yourself Gill. You will not forget Stephen but the difficult thing for those left behind is that there are reminders during the year that may bring all the loving memories flooding back. We do not want to be forgotten but we do not want loved one to be so sad that life becomes so difficult.
So there thinking of you Kid, sorry it will be a sad first Christmas for you but I sincerely hope that things do become better for you as time goes by. Lots of love and kisses xxxxxxxxxxxxxxxxxxxxxxxxxxxxx
Terry MG
Hi Christine
I have suffered and an suffering from PN but I tried not to take anything for it as I think that there is enough going through my body with the Chemo stuff as well. I kept a note each day what I was taking and what effects I was getting. Otherwise one day just merges into another. Thus I began to understand which days were better than others and I work around that. I fined the first cycle of any treatment my body reacts badly and then after that things get better. After the third cycle of Velcade everything settled done to an acceptable level. The 3 day of a cycle was my bad day of the week and after that things got better. By taking too many pain killers can hide other things going wrong. I agree that you should drink a lot, at least double of that before you were diagnosed with MM. Sorry if this is not a what you want to hear but I feel that his has helped me and when I am asked question I have chapter and verse and everyone is impressed including the pharmacy that when in hospital most of August they let me self medicate.
I try and keep my mind occupied by project managing a restoration of a sports car and know which day I can work in the garage and these where I cannot. It does take a lot of will power but I try mind over matter. Sometimes it is hard but it has been worth it in my case. I must admit I am taking cocodamal but this is for my ?Tree Trunk? right leg while I am awaiting the hospital to sort Radio therapy after the holidays but only as a very very last resort. When the hospital look at my leg they cannot believe I can carry on with the way it looks and not take anything for it.
So stick in there you may find it reduces the more cycles you have.
Regards Terry MG
Hi Mothas
How quick did you have the Zometa? The first time I did not feel too well but not as bad as you. The first time was infused over 20 minutes. I told the specialist nurse and they doubled the time to 40 to 45 minutes and after that everything was ok. Sometimes the top of my head hurt but I never had to take anything for it. I hope that my help you for your next Zometa treatment. Terry MG
Hi Di,
Keep me in the loop on this and let me know how you get on. I an awainting appointments to have Radio Theropy on my Right leg. I think it is so big that Rev cannot work on it alone.
Good luck…. Terry MG
Hi Everyone,
First of all thank you for your support. If Dai, Scott & Keith can keep me in the loop and they seem to be leading and I may be a follower! I did have DVT?s but I knew it was not that and since August I have had 5 ultra sounds on my right leg and one on the left when it started to show signs of doing the same thing. My local Cancer Unit was closed down and my consultant moved to another hospital. The new hospital advised that I should go their A&E as there was no room in their unit. I was treated for DVT as elimination and put in a general ward which was the wrong treatment but the general medical staff would not lesion to what I was telling them. After about a week I was moved to the Cancer unit which was much better. I was speaking to new people who understood Myeloma waiting for my consultant to return from holiday. I left hospital with my calf at 43 cm. I measure it every day along with other things on a daily spreadsheet and they know I know chapter & verse on all sorts of things. Today my calf is 52.5 cm and now the top of my led is much bigger too. On the first cycle of Lenalidomide the first 3 weeks were OK with some of the side affects like spongy feet, ringing in the ears and a few electric shocks in my right foot. As with all the treatments the areas with MM & Plasmacytomas let you know were they are. The pain in the right leg reduced. However, the rest week everything else was Ok including my left leg which has gone from red to a brown sun burn colour. The right leg went from brown to the raw state at the start.
The right leg is so big that none of my trousers or shoes fit. I now have to wear jogging bottoms and today it looks like I am wearing tights!!!
I spoke to Myeloma UK and they say they can help my Consultant if she has an issue on funding. They also confirmed what my consultant said, in that it may take several cycles for Lenalidomide to start working. The new hospital will be linked with Kings College Hospital London where I had my SCT and she in involved with trials also.
As I keep on saying ?failure is not an option? (Apollo 13 Space Mission statement).
I will keep you updated on progress.
Good luck to everyone in the MM club?? Terry MG
Picture in May when off Velcade and before the leg trouble started in June
Hi Andy,
Glad to hear that things are going in the right direction. I was interested in what others said about levels etc. My Igg was 70 when first diagnose in June 2010. It came down to 5.9 by September 2010. Doctors said they had never seen such a drop. However, because I also had spinal cord compression I was found to have DVT?s caused by Thalidomide and inactivity. I was taken off Thalidomide and prepared for STC. In hindsight I think I had my STC too early because I felt like s*1t. I relapsed after two months with a large tumour where the Hichman line was taken out. The Igg parameters on my hospital printout are 6.34 to 18.11. However, when I am well I am outside the lower level around 5 to 6. During this period I did not have my blood results at King?s. If I had seen them creeping up, I would have brought these to the doctors attention. After I relapsed a made certain they provided the old results and I could clearly see I was heading for a relapse well before the tumour got as big as it did. King?s Doctors kept on telling me it was a Hematoma. Anyway, at Sidcup I always get the blood results (very good lot of staff and very helpful). I now track all my blood results and have learnt what they are and how I seem to be affected. We are all different but I think I would like to reduce my levels like you Andy not to have dramatic swings like I have. So in your case this could be a good thing.
I am off Velcade as I had to get my platelet levels up to have biopsies. I filled in a routine GPs blood test form Cholesterol and I also ticked the PSA box (prostrate specific antigen). Only to discover when I got my weekly blood results I had the GP?s ones as well and PSA was 22! (I was 3.1 when I was diagnosed with MM) I have had prostrate cancer confirmed and now waiting bone scan and other stuff.
Still just another procedure to go through because ?failure is not an option?! Keep in there Andy. Regards?.. Terry MG
Hi Gill,
I do not go on the forum too often, only when the newsletter comes around and then I try to catch up on things.
First of all my thoughts are with you and Kevin. I will not say sorry as I for one do not like people feeling sorry for me. I have been wandering how you both have been getting on as I tread my path of issues as you are not too far away from me. Sometimes I think it is much harder for the carers than the one with MM. As much as the carers try to understand, it is only these with MM can really know what it is like but then there are a range of issues we all have. I am sorry you have not got your teddy bear back after Kevin came off Dex. I think anger is a good thing for Kevin if it is channelled in the right direction. I used it to get me walking again when there were doubts that this would ever happen. I wanted to be allowed to drive again to get some independence back to save Margaret having to do so much for me. I also wanted to pursue my hobby of restoring my per-war MG?s and go on rallies. After a year I was allowed to drive again. So this time last year I completed a 5 day rally. Since then I have relapsed from STC after 2 months and had a large tumour taken out of my chest 3 mouths later. Two months ago I have been diagnosed with advanced prostrate cancer but I still went on a 4 day rally to Scotland last week. When I was having my SCT I asked a doctor about things and was told not to plan in detail more than 3 months in advance but live your life to the full. This is what I intend to do and sod the MM & other stuff!! I acquired a very rare MG just before I was ill. Last year I decided to restore this car which is very difficult to do now. I have to pay for some of the heavy work I cannot do now. However, I work one day a week with a restoration company and 6 days a week on parts at home. Some days I can only do ½ hour but I do something. This keep me focused and I do not have time to mope around!! However, I cannot move a muscle without being reminded of MM. I may not get the car finished but I have made arrangements for it to be finished as it will always be known as my car well after I am gone. I am not planning to go yet and ALL my doctors know my motto: ?Failure is not an option?. If I was older I may be a little more sanguine but I still feel like a 20 year old and I do not think the time is right. I think I could well be following the path were Kevin is leading but I have set myself small objectives which I hope to tick of one by one. I have not been to our friends in France for two years but I hope to go sometime this year come what may.
Sorry if this is long but I do believe in the power of positive thinking which is getting me through all the ?stuff? which surround MM. My thoughts are with you both ?. Terry
Hi Wendy,
I had the red itching around the neck when I had my SCT in March 2011. This carried on until August when it disappeared as I relapsed. During this time Kings did all sorts of tests as thought it was connected with some blood I was given. In hindsight I just think it was the itching that I found out later that others had also had. I did also have a little eye trouble as well but that wore off much more quickly than the itching. Hope this helps to reassure you. E 45 cream did help a bit. Best wishes?..Terry
(Failure is not an option!)
Hi Gill & Stephen,
I do like to hear good news and thanks for sharing it with us. I do not come to the site that often as I try carry on as normal although my live is anything but normal with MM. I did try and contact you through the links on this site as an ?off line? email which I think is part of the functionality. I fully understand the DEX days! I now have managed to control them a bit by going on decaffeinated tea so I get some sleep on Tuesdays and Wednesdays! 2 or 3 hours is better that non. I would like to think I was always a Teddy Bear but you will have to ask my wife about that!
Best wishes to you both.
Terry
(Failure is not an option!)
Hi Eve,
I have Velcade once a week on a Tuesday for 4 weeks then a weeks rest before the start of the next cycle. On the Tuesday of the rest week is the consultant?s appointment. I have his at Sidcup South London. On week 1 of the cycle I also have Zemota. I am currently on cycle 4 week 3. Like Jet I regressed 2 months after my SCT when another tumour developed at the Hichman line site.
Timings
Arrive for appointment and have bloods taken and line fitted
While waiting for the blood results I am on a drip for about an hour ? this can vary but average 1 ½ hours.
When the blood results have come back I am told and I ask for printout as I monitor my own results.
Then I am given anti sickness and Velcade.
Sometimes this is delayed if the Velcade is not at Sidcup as it is prepared at another hospital (Farnborough).
I allow between 3 & 5 hours for my treatment.
I could have my blood taken the day before but Velcade does affect my platelet count. This falls each week so by week 3 or 4, I sometimes am very near the minimum level (30) of having the treatment. By having the results on the day gives a higher reading. I do not think having the bloods taken the day before would speed up my treatment too much.
Hope this helps?
Terry
(Failure is not an option!)
Hi Di,
Sorry to hear about your news. I know how it must feel. I spent all my time learning to walk after spinal cord compression. I responded well to treatment (CDT) but did get DVT. This time last year was told I was in ?virtual? remission and then went through with a BMT in March / April. In May I was told I was in remission. In July the removal of the Hickman line had turned in to a secondary tumour site. In October started Velcade (see newcomers 2 Oct 2011). Within 2 weeks of the first cycle of Velcade, lumps that the doctors though were sites where I had injected myself with Clexane had disappeared. Two other bumps disappeared. (So they were tumours as well!) Just had clinic today?Igg down to 5.7 and M band 3.4. This sounds like good news but I know there is something in my left side that is getting worse while other things are getting better. This is really to say I understand your ups and downs!….. I just take everything as it comes as I keep on saying ?Failure is NOT an option?! (Apollo 13 space mission). Just stick with it and hang in there?. Best wishes?. Terry MG
