Hi Steph
Well I spoke to the doctor on Monday again,it is only one particular anti sickness pill that has been found to stop hiccups,she said,she had not had time to find it,but recommended I see GP who could prescribe it,I might pop to my chemist as the pharmacy is very good at finding things that help.Eve
Hi Chris
Think of this as major surgery only it's on the blood,some people recover very early and others take months.Slim was unfortunate ,he has never gone back to his normal eating,and he loved his food and drink,food he was sick on in hospital he can not touch now. His appetite also changed,it is a constant battle to get him to put some weight on,because he has started treatment again and the weight just drops off.So try to eat small amounts often.
I also think it is hard for the people around you,I use to pester Slim to eat,looking back it did not help him,his taste buds have never returned,he has supplements now,they are called shots,it's just a mouthful of white liquid ,they contain 150 calories,Calogen Extra Shots by Nutricia,your own doctor can write a prescription for them,or ask the dietician at the hospital to get you some to try first as many of the supplements do not taste nice,but shots are just a mouthful.
You have just been unfortunate ,I am amazed when I hear of people who sail through SCT and a couple of weeks later are back at work,so do not be hard on yourself,Slim just about managed to avoid being tubed,and plod through it,one day at a time.Love Eve
Hi David
I would agree with Andy,but hindsight is a wonderful thing,Slim only got 6 months remission after the 100 days,his bloods never picked up,so for him personally it did not work,when he finished Velcade and had SCT after the 100 days his Bone Marrow showed no Myeloma cells complete remission,he never got back to being fit,and slowly went down hill.
Saying all that you should not compare as everyone is different,some people have years of remission,and others do not!!!!
I think the experts are still in the dark why some people respond well and others do not,what I have learned and also his consultant is Slim responds well to treatment,but as soon as treatment stops it comes back,so for him it's just buying time,he will be on Revilimid until it stops working. Eve
Hi David and Jean
Slim was 67 it is not so much age it's how fit you are!! If you are fit they put you on MX1 intensive pathway,which will lead to SCT,slim had a blip in the middle of treatment and Dex was reduced,but still went on for SCT.hope this is some help.
Hi Jean,nice to see you are making up for lost time and going on holiday. Eve
Hi Maureen
One week to go!!!will not be long.love Eve
Hi Kim
Welcome to the forum.
I can understand you wanting to be close to family and friends but I have to say the treatment in America is more advanced than in this country,if you can pay private you can get some drugs the NHS will not offer,I know the Marsdon is treating at least one patient with drugs not available on NHS.also NICE have a lot of imput the have a criteria that consultants have to follow.
It still is a postcode lottery,depends were you are for trials.plus any admission to hospital is different some are able to go straight to unit,but in my husbands case it's A&E then it's finding a suitable bed.
If I was in your shoes I would stay in America,has your husband any family that live near by????
An awful lot of people who work for the NHS are under pressure,and patients have long waiting times for treatment,but it does vary all over the country, Eve
Hi Andy
Well the holiday has done more for you than the tablets,I hope they find another drug for you soon,Slim has also been put on the RIVAROXABAN instead of Claxane but he also has been put on GCFS. Injections to help with his immune system ,it's only 3 a week,so not to bad.
The different tablets at different times,plus as you say empty or full stomach is getting Slim down as well,he usually looks after his own tablets,but I now keep an eye on what he is taking and when because some clash with food also.
We have trials of pomilidomyde starting in Kent ,but I know the consultant wants Slim to stay on CDR as long as it works,but the fact is as soon as he stops or the drug stops working,it comes back, reading up on it 15 percent are high risk myeloma,buying time but no remission and no miracle cure..
Enjoy your anniversary,make it special,as you say every day is a gift.Love Eve
Hi Andy
Looking on Facebook you had a good holiday lots of sunshine and relaxation,good for the body.
Slim has the problem with potassium ,upsets his stomach then throws up,so does not get any potassium in the blood anyway,but they do not seem to have much choice in what they can give him,tried the lot,so it's strong sickness tablets,that will also effect his bowels.
No one can explain to me why the body does not hold on to the potassium ,he is in today for Zometa plus 5 cycle of CDR.
Not to well at all,had a bit of a fall last night, no big bruises this morning !!?,
Will see what they have to say this morning.Love Eve
Hi David
I asked the doctor on Friday ,why his body has not absorbed the potassium,he has had 2 bags a day!!!,although anti biotics do take a lot away,with diarrhea !!! In theory his body should have absorbed some potassium ,I asked the doctor and she was honest and said she did not know why. I hoped someone on here might have an answer or had the sane problem.
Then the weekend came and Ellen and Maggie are 9 to 5 five days a week.
In hospital on Monday so might have some answers. Eve
Hi Everyone
Thank you for your imput,Eva I managed to get some that are 20 percent potassium daily allowance,so if I cannot get the high dose stuff from the hospital down him,I can at least give him a bit of a boost. It not that he will not take it,he just vomits up an hour later,which brings to question,how much of the other tablets are coming up as well.
Slim has started GCSF injections three times a week,to boost his white cells,phoned twice to the hospital for blood results,never got a reply. So Monday he starts chemo plus has Zometa,will be interesting to see blood results. If his nuets are over 0.6 he will start 5 cycle.
Vicky his bloods have been neuropenic for the last couple of months,but pick up on his week off!!!,it's just the fact he got a chest infection that caused the Neutropenic Sepsis,caught early,having RIVAROXABAN ,plus anti biotics.So in theory bloods should pick up.
Ian understand why they try to hit the Cancer as hard as they can,but I also can understand the danger of infection,and what it can do to the body in a short space of time,each one makes the recovery period a bit longer,weight just drops off.Eve
Hi Lolly
The GCSF do cause bone pain with some people,and I suppose they hit the weaker area ,you should gave been warned about them,best to take it at night,then he can have some pain relief and sleep it off.
If you look up GCSFor you should have a leaflet with them,Slim is on Nivestim ,which is a GCSF drug at this moment to help draw white cells out to his blood ,but apart from fatigue and general bone pain he is ok.
Hope you find a leaflet or you can down load one from the net.
The worse side effects are concerning the splean and fever
I think I can remember,they asked when Slim was due his Zometa,so this just might be the problem,I would ring in,they can always get a doctor to ring you. Eve
Hi Rebecca
All hospitals are different,also the machines are in use so they have tight schedules,this is were the differences occurs,some other illnesses all so have priority over Myeloma patients,so it is a balancing act to use the machines beds and the best possible use of staff,for example they like Myeloma patients to be on the same ward if possible.
They usually check the bloods when you come in for harvest,they can ring you later to tell you if they have enough,if they do not you have to go back and go straight on to machine,usually havering extra injections the night before and first thing in the morning,you do not get bloods checked second day.
Some people have to go more than 2 days,some people cannot produce enough,some lucky people go one day and produce 8 million!!!,why worry about something that has not started yet.
As for consultant being there!!! They have a teams that do this every day,and keep on top of things.
We had to travel 86 miles get there for 9 am,and do it all again the next day! No picnic just grateful to get on with it.Eve
Hi Scott
The whole thing should take 20 to30 minutes,saline on complete bag then Zometa,then quick flush through again with saline.Slims never had any problems,but I know people who say first infusion of Zometa causes side effects.
This forum does give you lots of information,were would patients carers and family,s be without it!!! Eve
Hi Steph
It is not that easy when a person has spinal compression,the person has to be assessed plus his needs have to be catered for.i think you need to have a good talk to the consultant,with the best will in the world ,sometimes the best place for your dad at the moment might be the hospital .
If you look at Maureen's post her husband is just about to come out of hospital after 10 months,you should find it under ,off topic.
I wish you well for the future and hope your Dad picks up enough to get home.eve
Hi Steph
I asked at the hospital this morning as we have been going for 2 1/2 years,and the young doctor said there is an anti sickness drug that has been found to stop the hiccups,she said she would look it up for me for Monday,Slim was hiccuping all morning in clinic ,so thanks to Dave I might have a more peaceful time. Eve
