Carol,
You are following the same path as so many others. They all say it’s hard but doable. Just concentrate on the benefits after SCT – Positive Mental Attitude. You’ve still got to see your granddaughter in the New Year.
I am sure you’ll be fine.
Richard
Bah Humbug! lol
Morning Caroline,
Nothing like knowing there’re others in the same boat, we can learn so much off each other. Now you need to keep us who are following in your footsteps posted on your progress.
Richard
Hi Andy,
Today was a good day for me with having the Stemcell collection but Dai was always in the back of my mind. Unfortunately there is no end to those being affected by this dreadful illness but the likes of Dai have made it easier for many of us to come to terms with the illness and gave us hope about the outcome. He will forever be in my thoughts. And you to.
Richard
Hi Ang,
Back home after blood test in the morning and Stemcell collection in the afternoon. All went without a hitch, it took me 3 1/2 hours but they are very pleased because they collected 10,000,000 cells per kg of bodyweight. They say they only wanted 2M /kg. No pain during the collection, all very easy as I’m sure others will tell you. If Graham is going back tomorrow then tell him not to worry, he will feel a lot better after.
Next stage is SCT and they have said that will be in 4 weeks, straight after Christmas. Hope Grahams happens quickly as well.
Richard
Hi Ang and Rebecca,
Well I don’t know about labour pain and unlikely to find out but on day 4 of the injections (Thursday), I had very excruciating pain in my lower back. I felt I had been kicked or had a kidney infection. It lasted 24 hours only and then have had just the odd throb since then. This has been mainly in the hips with just a bit in the sternum and shoulders. Today is the last day of the injections. Ang, I had the Cyclophosphomide on Wednesday last week and started the injections on Sunday so had a 5 day gap between. I also felt nauseous and the doctor suggested anti nausea drugs and Dexy, the Dexy I took for 1 day, the others I didn’t bother with. Apart from that no real problem. A blood test on the Monday revealed a large increase in Leucocytes followed by a big drop on Thursday (18.4 down to 1.9) I have been warned about fever, anything over 38.2 and it’s straight to hospital, so far so good.
As for thinking pain is good Ang, I said the same to my Oncologist. When he asked, I said “Pain is good, it shows it’s working”. Tomorrow is the big day for me, hospital, tests in the morning and if ok, collection in the afternoon.
Rebecca, I am surprised that you finished treatment in July and still not had SCT. Do you have a slow acting MM? Well, let’s hope that they can get you in next week, shame if you are in over Christmas but that may have benefits – like not having to eat Christmas dinner with relatives you don’t get on with (assumption I know)or getting away from a nagging husband and over excited children.
Anyway, I will update once I’m out again.
Richard
Well Tom, a real bummer I’m afraid. As for Velcade, they do say that it will hit MM hard initially and then be less effective. I have had Velcade since the end of June and have just finished the last session – Stemcell harvest on Monday.
The biggest thing is the pain I have from the Neuropathy in my feet. This started during treatment and got worse after treatment finished. My doctors says it will get better in the next 2 – 3 months. Apart from that I haven’t had any other side effects.
I just hope for you that it is still manageable and that they can stop it from being too severe. Time to pick yourself up, dust yourself down and carry on.
Richard
What a lovely little grand daughter you have, I do worry about our daughter, she understands I am not well and we tell her things on a need to know basis but it is very possible I won't see her grow into adulthood. But, I cannot alter what happens, I can only try and last as long as possible for her and my wife. Now as Megan Jane says, it is more important that the illness is stable because it then isn't making things worse. There are people we meet in the local support group who have had 11 – 12 years of remission and there is no reason why we can't achieve the same. I suppose the key is a positive attitude and a will to see through what you want. I know that doesn't guarantee anything but if it's not there to start with then why bother.
I'll stop lecturing now, hope I didn't hit a raw nerve.
Richard
Well Carol, you're doing better than me and a few others, my paraprotein dropped from 52 to only 31. That's after 1 attempt at PAD – caused major liver problems, 1 course of Revlimid – same reason and 3 cycles VCD. I am still going for stemcell and have started with the harvest but I know my paraprotein levels have to be as close to 1 as possible prior to reintroduction of Stemcells for the whole treatment to be succesful.
As Tom says, you still have a partial which is better than nothing at all.
My doctors tell me the 3 most likely groups to have MM are those in agriculture, the chemical industry and the nuclear industry.
Well if you think how much stuff we spray on food, how much radiation was thrown into the atmosphere in the 50's and 60's (not including Chernobyl)and just how many new and wonderful chemicals are used in everyday products then surely we should all be having MM.
It's not worth worrying about, the past has happened, get on with now and tomorrow. Don't waste energy on if's and but's, they've gone. Follow Eve's little strap line about why worry about tomorrow today.
Hi Megan, waiting for a bed here doesn't seem to be an issue but the Germans love their holidays so the doctor at the hospital said it was unlikely to happen over the Christmas period. There are people who will be in the ward over that period and I have nothing but praise for the care I have received over here but I would also like to spend christmas with my family. I'm sure you'll understand how important that is.
Anyway, moving swiftly on, I'm booked in for the harvest on 9 December so far everything is moving on nicely again.
Hi Ang,
I believe it's the doctors at the hospital who are pushing things now. My last Chemo session was 22 October, the hospital will be on shut down over Christmas which here means from 20 Dec until 6 January. So, that will be 2 1/2 months after last chemo before any more treatment. As we all know MM comes back so it could mean that all the effort with the Chemo could have been wasted.
Yesterday it was a visit to the Blood unit where the harvest will take place, had a chat with the doctor, signed the paperwork and so that side is done. I will have another chat with my Oncologist today and then begin. We'll see if he'll let me self inject with the stimulant or wants me to visit daily.
I understand why Graham is getting worried but the way I look at it is do we have a real choice. Yes, he can have a good remission from the Chemo but for how long, and is it really likely. If he is young enough physically as well as chronologically and his medics believe he can, then why not? As for Stemcell over Christmas, is that likely? The hospitals will be operating at minimal levels over that period in the UK so is it wise to have treatment that requires a long stay in hospital just before Christmas? Surely better to enjoy Christmas first and start afresh in January.
Today had a meeting at the Hospital in Mannheim followed in the afternoon with Zometa at my local Oncologist. The long and the short of it is that the Oncologist wasn't telling the hospital anything and as they will be managing the Stemcell, they were a bit concerned. so the decision was made to begin preparing for Stemcell harvest while the hospital finds out what's been happening.
Well this afternoon, the Oncologist said he hadn't received the results of the bone biopsy so wasn't planning anything. I suspect later this afternoon the hospital had a chat with him because I then had a phone call at 6:30 tonight saying that they will begin with Stemcell stimulation tomorrow. So, tomorrow I start the injections. My LgG level is still above 30 but we are going ahead for the moment with the harvest. The plan is to start now so that the after effects and everything will be done with by Christmas. Looks like January is likely for Stemcell.
We had a toast to Dai, sorely missed
I am so saddened to hear of Dai's death, although I did not know him personally and have been a member of this site for about 8 months only, I read his posts, shared the odd post with him and had some humurous and touching replies.
I add my condolences to the many that are sure to follow. We all knew it was coming, we just did not know when. If anyone needs an example of living in hope and not giving up, then they probably find it hard to match Dai's example.
We are going out for a meal tonight so we will be saying a toast to Dai.
