Eve I know what you mean,
We had a five hour marathon at hospital yesterday, Peter was going for his first ever immunoglobulin IV. Being given so we could go on holiday, I thought it would be like zometa, half an hour tops. Following which I was going to book a holiday
How wrong was I and although it was all arranged and in the fridge had to wait for Dr to sign the form. Three bottles each taking an hour and zometa to follow(sort of like pudding!!!) Annoying as it may seem I am just grateful Some of those long waits mean….. some poor soul is having a hard time, just as Peter did at the outset, he got a lot of attention when he was 1st diagnosed and someone else was no doubt waiting for the attention he was getting.
Its good to moan and I have done my fair share but hey as long as slim is getting better; maybe Im more laid back about it now I don't have to rush back to work or take time off.
Pharmacies thats something I can agree with… In the old days the Dr gave you a script and the chemist made up your medicine or counted out your tablets. Then handed them over. Today they are all pre packed and ready boxed but it takes a whole team of pharmacists to give you them type out a label or 10 ! and it takes 30 minutes every time.
They call it progress and innovation I call it frustration.
Min
I Clara
I recognise all of those side effects, brought it all back to me, how Peter was when he was on CDT.
Im so pleased to hear your dad is still going to work with all that is going on and not exhausted
The drinking one was the one that did and still does prove the worst one. You can do things to help the other side effects like wear a jumper to stop feeling cold, anti histamines for the itches Take the anti nausea to stop it!
You didn't mention any [b]hiccups[/b], that was an annoyance especially at bed time, as well as the leg cramps.
Tinned figs are good as well as hard liquorice for constipation.
If anyone has the secret to getting 3litrs of liquid down an mm patient i want to know about it as it caused all the arguments in my house when I notice a glass not drunk. I diy drip would be a great invention.mmmmm got me thinking. He never used to have any problems knocking back the bacardi and coke before he was ill.
Does it actualy say no alcohol? Of course it must do as he hasn't touched any in 20months. Probably accounts for the mood swings!
Min
I am so sorry for your loss, and understand your anger. I was similarly angry when my husband who had been under a renal consultant, with kidney failure hypercalceimia, crushed vertebra and mega protein in his urine was not diagnosed with MM for over 4months.
She told him to stop drinking milk to prevent hypercalceimia!!!!!! and said if he rested his crushed vertebra would mend. I know all about anger with the medical profession but have to finally admit that this is such a rare cancer its difficult to diagnose even for professionals.
I hope the coroner will act promptly, and allow you and his family to start the grieving process.
My thought are with you.
Min
Jet,
I would confirm what Debs has said, you figures must be light chains. Ask you specialist if you have Bence Jones MM. Its a slightly different form of MM. Quite a few people including my husband have it. He went from over 8000 down to just indoor 2000 on his first packet of 25mg Revlamid. Second dose was reduced f to 15 due to low blood neutraphils. There is a negligible amount of paraproteins but they are insignificant and were only mentioned after his SCT. Amounting to about 2.
Even when he was counting 8000 he was feeling great and looking good but the underlying disease was still doing damage, particularly to his kidneys.
Min
Hi Dai,
I went on the 5th of March to Newcastle one, and had been invited to give a talk from a carers perspective( I hate the term carer I call myself a worrier cos I worry about him) To the 80 guests who attended. I was terrified!
It was an excellent day and well worth attending. The morning is given over to talks by health professionals, lunch is great and the afternoon is given over to three separate events I chose to stay in the main room and ask and listen to questions of the Haematology Professor other rooms had someone doing a bit on benefits I think, and don't remember what went on in the other room but the nurses including Ellen and the team from Myeloma UK were there there too. If you have any questions whatsoever that you feel you need the answers to but run out of time during your clinic consultation it is a wonderful opportunity to learn about the up to date drugs that are coming on line, for instance there is a train of thought that 2nd SCT will become outdated, due to new drugs with better outcomes. I don't remember it all but I came home thinking I knew it all, or certainly a good deal more thatn I had learnt in the 20months since Peter was diagnosed.
Plus the opportunity to meet people like yourself who have had or or are waiting for SCT etc.
It will put a lot of your and Janets fears to rest Im sure.
Enjoy and make notes(they will give you the writing material) Don't worry cos there are breaks for tea and coffee during the day too.
Regards
Min
Poor Lamb,
That means your left to do the house training for the poo pee.
I hope you can get him something to help him feel well soon. These toxic drugs are archaic, if only they could find something kinder to treat the dreaded beast, not Steven Gill, but MM.
Sadly because it is doing combat with a belligerent host it needs to come out fighting and someone will always get hurt. I know you said he had no taste buds except for curry, did you get carried away with the chillies?
Get well soon Steven.
love
Min
Now Gill
You have me thinking that I might have to try that, being newly retired. Hee Hee
MIn
Hi Shirls
Really pleased its all going so well. so I imagine you will be having an additional Birthday now, for the new you! You deserve some fun now but stay out of the big market when you come to Newcastle.
All the best for the new phase of your life and long may it last
luvmin
Ann Its possible that they will also give him GCSF injections rather than an transplant as they will force his body to produce extra new immature cells to replace the ones killed with the melphalan. The body makes its own but help is useful.
min
Hi Nigel,
When Peter was on velcade, his bloods were done in house so to speakThe machine and equipment were in the day ward. (State of the art new hospital) and depending on the results depended on what dose if any he got on any given day. He had days when he got half a dose and other days when his platelets were too low for any velcade at all.
The final decision was down to a registrar in the day unit, and she used to ring the consultant just to check for sure.
Whilst we grasped some of the figures it was impossible as a layman to understand the significance of them.
Hi Tracey.
Im the one who's husband had/has the nephrotic syndrome before diagnosis with MM. I was concerned to read of fluid restrictions in your post, as Peter has had to drink more than the average in order to get the light chains out of the kidneys. Its the light chains that alters the glomular filtration rate and stops them working making them leak in to the legs waist etc. The only way to rid the kidneys of them is to drink as much as you can in order to get rid of them.
We found the kidney people were not too well versed in MM and their advise was at odds with the advise of the haematology unit. The Renal unit did not seem to know that light chains were the cause of the problems.
I should say he was on massive doses of frusomide which he took three times a day about 60mg each time. And a similarly large dose of daily prednisalone Like you he had fluid retention up to his waist and in the lining of his lungs. The skin was so taut it was painful and needed lots of lotion to keep it supple.
I can tell you that it was about three months into his CDT treatment before he saw any real benefit to his kidneys and I took time off work to ensure he drank the required 3 litres a day after which the swelling went almost immediately.
He did not want to drink too much because he though it was going to cause more fluid retention and swelling not to mention the many visits to the loo with a broken back and the renal unit agreed, but the Haematologist insisted he was going to be very ill if he did not drink as much as possible. They even threatened to take him in as an inpatient to ensure he did drink sufficient.
Today he has sparrows ankles for the 1st time since his relapse in Oct. I left work a few weeks ago and have been beating him up with water to bring this about! Making him drink it. or tea or coffee or anything but alcohol.
Our friends husband who had amloidosis and mm was on velcade alone as he could not tolerate the dex but has made a good recovery from both.
Regards
Min
A young lady to be very proud of Gill.
I think she deserves a very special hug from her Pop
LuvMIn
Jean have a wonderful time on your holiday, don't worry…… if Frank is not exhausted he must be reasonably well.
Peter used to use diazepam for muscular pain too so hope it makes him comfortable enough to enjoy his holidays. He sounds like a very determined chap and as long as he feels well, don't panic. Enjoy and come back and tell us how it went. Im really envious of you and Peters consultant has told him he can have a holiday as long as he has a drip of some immunoglobulin before he goes.
so once we find a holiday have to dash him off to the hospital for a drip. Then get the three dogs and cats into kennels pack our bags and stay in bed for a week to get over the preparation for going Its a pain in the kneck ha ha
WE will make it one day and don't want to put it off too long but am put off as going out of the comfort zone of local hospital. Hope the sun shines and its hot for you.
Love MIn
Hi Anne
Sorry to hear your husband is having such a bad time. But I am pleased you found your way to the place where we can offer you support of whatever kind you need. Its a shame that he was not able to respond to anti histamines for the rash, but did he respond well to the Revlamid otherwise? My husband is on his third line treatment too, having relapsed with both the others. He is on Revlamid and uses antihistamines to prevent itching that it caused.( I think he gave it to me as I do the itching now Ha Ha)
I think its melphalan that your husband has been given. Download the info guide called high dose therapy from this web site and you will get more of an insight into how sick it makes you.
If I am correct this is the part of the treatment that all MM patients who are going to have a transplant have, to kill off all the remaining MM cells in the bone marrow.In essence it is high dose chemotherapy, very few people are able to withstand this without feeling and being really sick.(nausea) I am sure the medical staff will be giving him the kind of drugs that help to prevent it, but it does make for a really bad time for the patient.
I am sure there are other people with more expertise in knowing the side effects of melphalan, but my husband did not suffer too badly from it as he had regular drugs to keep the sickness at bay. The secret is not to wait till you feel sick, to ask for the drugs; but to keep them topped up to prevent it happening.
Where is he being treated, someone on here will be familiar with his consultant, and nurse specialist to whom you should be able to direct questions.
I hope he starts to feel well soon, don't despair, as Im sure he is in good hands, and they will do all that is necessary to get the darn beast under control; even though he is suffering at the moment.
Sadly part of the treatment is to make people unwell in order to make them well. How strange!
Come back and let us know how you are doing as I know how draining it can be to watch your husband so ill, and of course keep us up to date with how he is.
Take Care
Min
Eva
You are sooooo lucky, Peters ambition or bucket list is to visit the 'great wall' I would just like to visit China.
I am so envious and your photos are amazing. We once visited schools in Kenya where the children wrote in the sand and they had no paper or pens until they were proficient at the alphabet, we can count ourselves very lucky in this country of our, as they touch your heart.
Can I assume you are in remission? and how difficult was it to get Insurance?
