[ronParticipant]

Hi everyone

I introduced myself on the "Newcomers" page the other day. My wife Christine is aged 69 (one month away from 70)and has only been under treatment for myeloma for 2 weeks – hence I am very green on the whole issue. After 2 weeks on cyclophosphomide, dexamethasone and thalidomide, we had our first check-up with the haematologist today and he has identified anaemia (which I strongly suspected as she has been extremely fatigued for weeks and this is so unlike her), and he has arranged for her to have a blood transfusion this Friday. Has anyone had experience of this, and if so what are the benefits/drawbacks of it?

Regards to all
Ron

[brochoParticipant]

Hi Ron sorry your wife is feeling rotten ,once the treatment starts to kick in she will feel better Anaemia is very common in myeloma, especially when first diagnosed.I didnt have any negative reaction to the transfusions and it certainly made me feel better. Its all so confusing in the beginning so you have come to the right place to ask questions, the nurses on the info line are excellent as well Best wishes to you both Bridget

[GillParticipant]

Hi Ron
It is my husband with mm he has not had a transfusion as yet but has been throught to CDT route (this is his second lot) I am sure many others will give you more info than I can. Good luck Gill

[RozParticipant]

Hi Ron

Michael my husband had lots of blood transfusions. Anaemia was a part of his myeloma.
You will see that once your wife has had the blood, she will start to improve.
I have not known any drawbaks from transfusions, the opposite in fact. Your wife, or your self will know when this is needed again in time. With Michael I always knew before he did, because he always tried to pretend things were fine.

I wish both you and your wife all the best for the future. this site will help you along the way.
Love
Roz

[roncantrillParticipant]

Hi Ron, First, hello and welcome. I guess you are beginning to get the feel of this little community now. Like you, it is my wife Pauline who was diagnosed,out of the blue, nearly 2 years ago just before her 65th birthday. Nothing that you have experienced so far is in any way unusual. Pauline had all of that and more, but she was very unlucky and had a severe toxic reaction to one of the drugs. It was a worrying 3 months but everything got sorted and, until she got a nasty cough and cold a month ago, she was playing golf again on a regular basis and still beating me. You will find that, no matter what happens, someone here has already been there but no two have had the same combination of problems. That just seems to be the way it is. One important point which no one seems to have mentioned yet – don't go surfing the net for information. Most of what you find is out of date and worrying. Everything you need is right here until you have learned enough to make sense of things. You will probably get a lot of useful information if you say where you are being treated and, if you get a chance, try and get to one of the Myeloma info days. It will probably take a few months for all of the treatment regimes to be fine tuned to your wife's needs so keep the feedback coming and hopefully, in a while, you may be in a position to offer help and encouragement. Again, welcome to the club which no-one wants to join.
Another Ron.

[ronParticipant]

Many thanks for your helpful responses. As you say, Ron, it is worrying if you give in to the temptation to trawl the net, and that was precisely what I had been doing before I discovered this site! Physically, Christine is standing up to the CDT treatment without too many bad side-effects, the main problems being constipation, extreme anxiety and constant shaking. I am hoping she gets some encouraging feedback when we see the haematologist on Tuesday, but I fear that her enxiety stems directly from the actual chemo treatment rather than from a rational assessment of her situation.

Interesting, Ron, and encouraging that your wife is a keen golfer and that she is normally well enough to play to a decent standard. I haven't set foot on the golf course for 3 months now and I fear I'm beginning to get withdrawal symptoms!

Regards to all
Ron

[roncantrillParticipant]

Hi Ron, I hope that Christine soon gets the treatment balanced. The early days always seem to be the most difficult. We just focused on getting to know as much as possible about treatment and possible outcomes and making sure that we followed the treatment regime as closely as possible. I have followed a lot of stories on this site and found most of them to be encouraging. It used to be a lot easier on the old site because there was only one section but I tend to stick to General now. You will probably find that the next few weeks will be the worst because as thing progress you will get to the stage where you understand what is happening an why. Sadly, there only seems to be general rules and no-one can be certain how things will progress but we have found that the Myeloma teams are all dedicated to producing the best possible outcome. It's just a case of getting to know the enemy and using everything available to fight it. Please keep posting. the next few weeks are the most important and I hope you soon get to the point where you feel a bit more in control. Ron.
P.S. We are both pretty useless at golf but we do it together.

[BADGERParticipant]

Hello Ron

welcome to the site I know you will find all the help and advise you need here, I did. I was diagnosed two years ago and one of the first treatments I had was seven units of blood as I was so anaemic this was partly due to the fact my kidneys had failed I continued to have two units every month for at least six months it really helped me not feel so tired it then went to every three months now I have lasted six months because my kidneys are now working a bit better I have never had a problem from the transfusions and they helped my a great deal so I am sure your wife will cope very well with them give her my best wishes fingers crossed for the treatments

Regards Jo

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