This topic contains 7 replies, has 7 voices, and was last updated by 
johnandjunediamond 11 years, 3 months ago.
Hi There, My wife who is 46 was recently diagnosed with MM, they`ve started on the Thalidomide,chemo,steroid 3 week regime.
However, 7 days in,she got an infection and was rushed to hospital, where she was pumped full of anti-biotics and morphine for the pain for 6 nights, on coming home she continued the treatment but was constantly nauseous and very dizzy, ending up most days in bed, she came off the morphine and improved on returning to hospital her white blood count is still very low and she has somehow now got a heart problem and treatment has stopped completely.
She didn't finish cycle 1 having missed one chemo session and a steroid session, cycle 2 has been postponed, shes devastated and depressed because she just wants to get on with the treatment.
Any info or previous experience of this would be much appreciated. As would any tips etc
Thanks.
Greg
Hi Greg and Wife (don't know your name yet 🙂 )
Am sorry your wife took the drugs badly, I have never had much of a problem with the regime I went through but as you will find out we all differ in our treatment and response to it.
Some time it takes a few dips at the drugs to find which is best for us, I wish you both good luck in your road to remission
Tom Onwards and upwards x
Hi Greg,
Sorry to hear your wife has had a rocky start to her treatment. It is very, very difficult but the best way to cope with all the ups and downs of MM is to take it one day at a time, easier said than done 🙂
My husband Phil was diagnosed in May 2013 at the age of 43, he was immediately put on Velcade, dox and dex. His first cycle was stopped early as they were concerned about the lytic lesions in both hips, he was admitted to hospital and three weeks later he was discharged with new rods in both legs to stabilise his femur bones. The operations delayed the second cycle and then it was either his second or third cycle (it has blurred in my memory) that was cut short as he was admitted to hospital with pneumonia, this again delayed the next cycle. The drugs to fight the Myeloma suppress the immune system so more infections are an unfortunate possible side effect.
I can understand the devastation and depression and the just wanting to get on with it but it is better to have delays during treatment to ensure your wife is strong enough to cope with the drugs. Treatment can be a long road but I can tell you that for Phil, despite some very low days, he is now 15 months post diagnosis, in Complete Remission and feeling better than he has at any time in the past 18 months.
Was your wife given any anti sickness meds? I know there are different types so she may want to check with her doctor if there is another one she could try. Have you been given any idea of when treatment can start again?
Megan
Hi Greg and family,
Firstly hope your wife is feeling a little better today and oddly welcome to the site 🙂
This mm can be a real roller coaster, my partner Colin was diagnosed in October 2011 and had an sct in October 2012. There want a month went by during his induction treatment of revlimid, cyclophos and dex where we didn't have to visit the hospital or he was in for a week at a time, full if antibiotics, like your wife. He had his treatments delayed too because his neutrophils were so low. It is a real blow when that happens but he got through it, and so will your wife with your support. It's not easy though and mentally this is a tough nut to crack, for all concerned. Hopefully you will be able to refocus and crack on soon
With best wishes, and ask away any questions, Vicki and Colin xx
Hi there,
A similar thing happened to me, I went into hospital with Pneumonia and had MM diagnosed. I had one course of PAD and developed Diarrhea, back in for a second time to sort that out. Went for blood tests prior to my second Chemo and was found to have very high Liver enzyme levels. If I had the chemo then that would have been fatal, They then tried Revlimid but that caused the same liver problems so that was stopped after a week. After 2 months I was put on Velcade Dexy, I coped with that so I am now on full VCD.
The thing to note is that there are a lot of Chemo options that can be used, if one causes a problem, the Medics have an alternative. The fact they stopped the first Chemo after 3 days although not ideal does not mean it was a total failure, it will have done something to the MM. When they stopped me I was told to take Dexy in the interim to help keep the MM in check, they may do the same for your wife.
The Medics may have carried out a calculated risk weighing current illness against the need to treat the MM, they did with me when they put me on PAD despite still having water in my left lung from the Pneumonia, I believe I was still too weak to deal with the strength of the PAD but that's what these guys are employed to do.
I think you need to remember there is an alternative chemo, those diagnosed early enough do make it to full remission. Your wife is young and that helps. The internet is double edged, there are plenty of scare stories out there but there are also plenty of good full remission stories. I am certain both your emotional states are taking a hammering and that you are probably very scared, I think we all were, My wife and I didn't stop crying for the first 6 weeks, every time I have a knock back it hits us hard but we know that now. My fight to survive stems from us having a 6 year old daughter and I'll be bu*****d if I'm going to let MM stop me from seeing her grow up.
So, you will learn to take the ups and downs and there will be lot. There is a lot to take in but you are not by yourself and there is help and support out there, use it, make the most of it because it will help both physically and emotionally.
Hi Greg
Welcome to this Site. So sorry you have had to join us and so sorry your wife has had such a bad time.
My own problems with chemo treatment didn't start till later, but I got shingles and spent a week in hospital with sickness and some kind of infection. However, I was given two different sorts of anti sickness drugs up front and they kept things under control apart from this one occasion.
Having said all this, after six regimes I was in remission and have been for a year now. For various reasons I haven't gone for a Stem Cell Transplant (SCT).
It is hard but you will both find the strength to get through. Do keep in touch and let us know how things go and ask any questions. I have found this site a real life-line.
Very best wishes.
Mavis
Thanks for all the answers and support.
Just a wee update, we had a visit to the hospital today, we've got an appt to see the cardiologist on the 1st sept. They are going to restart the steroids tommoz, but won't start the thalidomide until the heart problem is sorted. Chemo won't start until her white blood count is above 1.00, it's 0.19 at the moment. Just had numbers thrown at us all day. Her para-protein level is 33 having come down from 46, what ever that means! Is that high or average for people with MM?
Once again thanks for the info.
if they are freely giving you detail's greg,that's a good start!!,our hospital it's like drawing teeth,getting anything more than….she's stable/doing better/were not sure what's causing it!!……and definatley frown on the fact that im trying to learn about the desease 🙁 get yourself a pocket diary and keep a record of everything you can,everytime they give you a figure ask what it should be,get drug name's and research them for side effect expectation's,IE:- it helps to understand why youur wife is not quite with it at time's or what is causing the vomiting/diaoreah and such like…make's it less scary if you know what to expect, best wishe's j&j
The topic ‘Newly diagnosed and problems on 1st cycle.’ is closed to new replies.
