You are having it tough, hold on Eve, as you say he is still alive and where there is life there is hope.
I hope you are both enjoying this sunshine while it lasts. I have just had an email at work from Steve telling me how he has had a glass of rose in the sun, with his lunch!
Much love, Mari xx
hi Tom,
I have come late to this strand. Good luck with you stem cell collection. I hope it all goes well.
The actual harvest process can affect your bllods too. Look out for low platelets and drink milk or eat yoghurt prior to the process to help your calcium levels.
Good luck with everything. I am excited for you, it's tough to go through but hopefully it will mean a nice period of remission where you can be drug free and really enjoy life,
Love annd best wishes,
Mari
Hi Pauline and Marc,
I am sorry you are having a tough time with your health professionals. I agree with both Eve and Maureen. There is some excellent information on the website that explains what all the possible results are, and gives you the acceptable ranges for each reading, so you can tell when a reading is too high or too low. In the three and a half years that we have been living with this disease I have made it my business to know what Steve's results are, and what they mean. I know things now that I never expected or wanted to know.
I understand that it may be very difficult to communicate with your doctor if you feel that he/she does not respect your need to know. I think it is perfectly reasonable to ask what Marc's paraprotein levels are and whether they are rising or falling. Similarly you may want to know what his haemaglobin levels are, and maybe platelets and neutrophils. I am sorry to use all the technical terms but these are factors that all of us living with myeloma need to understand, and also to be aware of the implications of raised or lowered levels of these results.
The section on the website that deals with these results is very clear and easy to understand. Take some time to read it, and maybe talk to the nurse on the Helpline. I am sure you will feel more confident when you next talk to your doctor or Macmillan nurse.
My husband's consultant always writes a letter to his GP after a consultation and this lays out his more important results and describes what course of action has been decided apon after the consultation. We always get a copy of this letter and that helps us understand what is happening. I believe this is standard policy in our health trust. Maybe this is also something you could investigate with your consultant. The days of patronising patients and keeping them in the dark should be long gone.
I am going to go out on a limb here, and I hope you will forgive me, I dont mean to offend you. I wonder if you would feel strong enough to take a deep breath and to point out, very calmly and gently, that you would like to be active partners in the management of your partners disease and would be grateful to be kept in the picture with regard to results etc.
Good luck,
Love Mari x
Hi Eve,
It sounds as if you and Slim have been through the mill. I am so sorry to hear that. Last time I heard he was recovering from SCT and were off to NZ. I hope you had a good time.
I agree with everything you say, everything looks different with hindsight, but I wrote this to help other people approaching a second transplant.
I am still working, we need the money! But it also helps me keep going. We live close to where I work so i can be on hand if Steve needs me. I am a teacher and it will be summer holidays soon. We are hoping we can go away for a few days. Some sun and relaxation will do him the world of good.
I hope you are looking after yourself and that Slim will feel better soon.
Much love, Mari xxx
I just want to stress that I am talking about second transplants, I dont want this to put anyone off a first SCT. They are nasty but can give good long treatment free remission giving a wondeful time of normality to so many people living with MM
Hello Chris,
My husband, Stephen had his second SCT on September 15th. His first one gave him 14 months remission and we were surprised that he was offered a second but he decided to go ahead on the basis that it might buy him some more time. He will have his 100 day bmb just before Christmas so we have no idea as to how effective this one has been, although he has had blood tests which show his pp levels are less than 2. He struggled to get enough stem cells and had to have three injections for plerixafor to mobilise his stem cells and managed to get 2.2 million. He had quite a rough time ending up with engraftment syndrome, kidney and liver problems during the transplant but still came home after 20 days, sooner than with his first. It seems to me that his blood cells counts have been slow to recover but it's hard to remember last time. He has had several units of whole blood, 6 ish plus platelets as well. His haemaglobin is on the way up and he feels much stronger. He has been speaking to his boss and he is going to do some work from home for three days next week. He commutes to London and does not yet feel ready to attempt that but he is getting bored at home and has not needed to sleep during the day for about three weeks now.
I dont know whether this has helped you, and it is unlikely that you will have a similar experience as this disease seems to affect everyone differently. However you had such a good remission first time around and you could well get another long remission, although the do say remission is less the second time around. Whatever you decide I wish you well with all your further treatment,
Best wishes,
Mari
Dear Eve,
I am with you 100% on this. I know you have had a very tough time over the last two years and I am sorry that this has taken a toll on your health. I really hope you are getting some relief now and will feel better soon.
I can only echo your experiences and I have to say I really dont know how break the cycle. I would be grateful for some advice. People say 'you must find some time for yourself' but it's well nigh impossible. I work full time, have to try and keep the house and garden on track and keep Steve going through his SCT. Eight weeks down the line he is getting much better but I know he will do too much if I don't keep a very firm hold on him.
On top of all this my dad has been getting increasingly poorly in North Wales with bowel cancer and he passed away last week. I have lost count of the number of late night or early morning emergency dashes I have done when he has fallen or been taken ill again. All these also mean time off work and then more stress there trying to catch up. Oh no this is turning into a full scale moan. Sorry
Anyway this week I have been diagnosed with a gall bladder problem, I think it will mean an operation eventually but I could do without this pain in the side just now. I am beginning to wonder what else can be thrown at us! But we are still standing and Steve is doing well.
Any suggestions on how to find that time for myself gratefully received.
Hope you feel better,
Love Marixx
Dear Vivki and Colin,
Really pleased to hear things are on the up and I hope Colin soon starts to feel a lot better,
Much love and best wishes,
Mari xx
Dear Phil,
I agree with Eve, there is no 'normal' with this disease. I know it's easy to say but try not to worry that a low neut count means your disease is still active. Remember the melphalan takes out the bone marrow where all the blood cells are made. Some are quicker to recover than others. Steve had his second SCT almost 8 weeks ago, 17th Sept . His neuts were only 0.5 when he came home after 3 weeks, I was surprised he was let home so early. Since then they have risen to 1.7 and then dropped right down to 0.3, this week they are at 2.0 when he had his one month check back at Kings. His platelets have been hit particularly hard this time around. They rose slowly to the low teens before he came out but again dropped down to 0.3, again these were at 43 this week but he has had several platelet and whole blood transfusions. This was worrying because he was bruising pretty badly, but that has stopped now. His Hb has been dodgy too, 8.8 on discharge but dropping to 7.7 when he had three units of blood which brought up his count to 10.6 but it slid down to 8.6 a week ago but had climbed to 9.3 by the end of the week at his check up. He is getting two more units of whole blood tomorrow. Phew sorry about all those numbers, dont want to overdo it but just to show you how variable these things can be. His doctor was more than happy with him on Wednesday and felt that there was evidence that his bone marrow was starting to work normally again without support from further GCSF, despite all the transfusions. These figures have no relevance to you at all, for one thing this is his second and his bone marrow is likely to be in much worse shape than yours. The disease and chemo both take their toll. However I do remember a similar picture with his first SCT and his neuts bumped along the bottom line for a while. Having said this at 100 days his biopsy showed no sign of the disease and he felt well enough to start working part time just one month later. I don't know if this helps at all, but just try to relax and let your body do what it needs to do, it just takes time to recover, look after yourself in the meantime,
Best wishes, Mari x
Just a quick note on taste, we had a bit of a celebration this weekend as Steve got his 'Beer taste' back and he enjoyed a bottle of beer with his supper,it had tasted horrible before, things really do improve a little bit all the time!
Dear Vicki,
I am glad I was able to help. I know how hard it is to just watch without being able to do much to help. I too struggled with what to find to tempt an appetite. I agree with Helen that sometimes fluids are most important. I found some cold fruit teas in M&S, Steve enjoyed raspberry and Rooiboos (sp), 130 calories, and there is a peach and chamomile, a bit sweet and another I cant rememeber. Cocolate buttons went down well as well as mini melt in the mouth jaffa cakes also from Marks. Ice lollies he enjoyed. Yoghurts are good as long as you find the non bio ones, they are cool and slip down easy, jelly is also good. He also would eat a tiny bit of cheese on a sliver of toast, maybe a quarter of a slice in total,very slowly, piece by tiny piece, but it was better than nothing. The ward had a little kitchen and would do a few things for him. As he started to regain his appetite he fancied a pecan Danish and the first time I really saw him eat properly it was pie and chips from the ward kitchen that just did not touch the sides! This was a day before he went home, 20 days after he went in. So you see, things will improve.
Steve is going back to King's tomorrow for his one month appointment. His Haemoglobin is 8.7 and he is having two units of blood later this week. His neutrophils are now 1.32 and his platelets are finally on the up, having hit a low of 0.3 and are now 37, his platelet infusion has been cancelled. It takes time but it gets there. He gets a bit breathless but thats the anaemia. His consultant has suggested a little light exercise and has said he can ride his bike again, but best of all he is having the Hickman out next week. I know this means a great deal to Steve.
We are both wishing you well as his neutrophils still drop. He is going to feel rough and sleeping is probably the best for him. If you can try to share the load with any family members or really close friends that will go to see him sometimes to give you a day off. Steve says there was not a day when he did not have a visitor but I did stay home about twice a week and it helped my sanity. You will suddenly start to notice an improvement and once things turn around you will be surprised at how soon he will be home again,
Much love, Mari xxx
Hang in there Vicki, I know how tough this must be for you, quite apart from what poor Colin is going through. Steve had a similar experience, caused again by the large number of bags of stem cells and the effect of the preservative. He went downhil from the Thursday of the first week, having had melphalan on the Monday and stem cells back on Tues, Wed and Thurs. He was pretty rough over the first weekend, which I spent with him. I was not planning to go in in the Monday, our daughter and Steve's brother were both spending time with him. They both called me to let me know he was not well and I rushed up to London to see him. I left that night fully expecting a call to say he was getting worse but he started to improve and was sent home less than two weeks later. The middle week was rocky but by the second weekend he was much improved. Looking back this was much the same as his first time. It is not the same for everyone and you cannot measure Colin's progress by how he 'should' be doing. I am sure he is getting the best care available and he will need to take time for his body to deal with the drugs and the stems cells. Dont be too hard on yourself or on him, it will take time. Steve came home after three weeks and we were all amazed at how well his bloods were doing. He has just cooked our Sunday lunch, he loves cooking. He could not have done this last week and he is having a nap now, but he will be up later, probably walking around the kitchen to help build up his muscles. Every day he is getting stronger, but he is listening to his body and resting a great deal, it just takes time. I hope this helps in some way, I am not very good at saying helpful things, just look after yourselves and good luck,
Love Mari xx
Hello Vicki and Colin,
just a quick word to wish you both well and a good recovery and remission for Colin,
Love Mari xx
Stephen came home yesterday. As is to be expected he is very weak and listless. According to the letter the doctors sent home with him he suffered neutropenic sepsis, acute kidney injury and liver damage while he was in. I was surprised we did not hear about this at the time but I knew he was very poorly. It will take sometime for him to gather his strength and I am at my lowest ebb, what with other difficulties in the family. what does not kill us will only make us stronger. I don't think I will be posting for a while, I don't like making negative posts
Morning all, should be working, but skiving on the computer so a v quick one.
Bad day yesterday, high temp, 39 +, low BP, dont really get that, maybe dehydrated but 103/ 59 sounds v low to me, anyone medical can explain this one? Still got the rash but I thought it looked a touch less angry last night, hard to say. But worst of all the dreaded diarrhoea. He wont eat because it will go straight through. My poor love is going through the mill but doing it so bravely, he just keeps thanking me for being there beside him, as if I would be anywhere else! He is 'Stable' today which means still the same. He is getting excellent nursing and medical care in Kings, those nurses really are angels. I know he is in the best place,
More good news soon I hope,
Love to all, Mari xx
