Setting Appropriate Expectations

My 77 year old father "Pops" was diagnosed with MM in July. This just 3 weeks after a quadruple bypass! His only fear in life was the Big C and now his fear has come to fruition. He started Velcade injections 6 weeks ago. He is on a 4 week on 1 week off cycle. He has also received 2 Procrit injections. Thus far the only side effect he has experienced is fatigue, which I think is fantastic and so does he! His oncologist said that Velcade was the best form of treatment for him other than a "pill" that he can take but it is very costly and cannot be crushed(Pops cannot swallow pills). I have been attempting to set appropriate expectations with Pops but times it is not an easy task. He hears what he wants to hear. He knows and understands that we will likely always have to have the Velcade injections with a few short breaks here and there. What I would like to know from those that might read this is what should I expect for him? Someone his age, with the onset of dementia and the heart issues how long can the Velcade keep the MM symptoms in hiding? My wife and I moved in with him after the heart surgery because he was a complete mess mentally from the by-pass. The doctors and other "professionals" said he would likely not snap out of it especially with the MM. Well he did! What do we look forward to as far as the MM is concerned? He is in the advanced stages evidenced by lesions on his skull(thatsn the way it was described to us). I am just curious as to what others have experienced with similiar circumstances. I have a yearning to try my best to understand this as best I can so that I kmnow what to expect as well as how to best care for Pops. Any and all responses are welcomed.

Side note his bloods levels since starting Velcade has remained between 10 and 11. He had 2 blood transfusions in 4 weeks just prior to starting the Velcade/Procrit cycle and has since not had to receive another.

Thanks and God Bless!

Hi, do you know what his m-protien level is? also expect some side effects to emerge as time goes on, foot and hand nerve issues.The side effects from velcade are cummalative. the pills are revlemid and dexamthadone, both are used in conjunction with velcade and can be very effective. I had or maybe still have some scull lesions and was told not to worry. The m protien is the best way to follow results, mine started at 5.9 and now is 1.7

i

ps, My stem cell transplant doc has patients as young as 22, and as old as 94 so don't give up on him as you may be pleasently surprised, one never knows.My brother was worried about me in Feb.2012, God called him home in May and I am still here.

Awesome post


Interesting that your doc has patients so old. My mother just started the chemo pill for MM. We were told that she would not be a candidate for Stem Cell Transplant because of her age. She is 72. Any thoughts on that?
rodney said:

ps, My stem cell transplant doc has patients as young as 22, and as old as 94 so don't give up on him as you may be pleasently surprised, one never knows.My brother was worried about me in Feb.2012, God called him home in May and I am still here.

I think that it is up to each hospital's ethics committee when they determine who can and cannot have transplants. At our hospital the cut off I think is now 70 and in good health. They also would only allow one stem cell transplant per person. This has since changed and there is one man I think on his third. Someone suggested that you keep track of the M-spike, this is what tells you if the myeloma is active and if the number changing will keep you and your family informed. I would also look for a support group in your area. They will be able to give you information about the disease, as well as provide a social network of support. It is a funny disease this cancer we have, some folks dx in their 70's go on to live an other 15 years, that sounds good to me. Don't give up on your dad or the Velcade. Lots of good things being said and right now it seems to be leading the pack as far as drugs prescribed for initial treatment. Good luck and take care, To Rodney, I am sorry for your loss. I am the oldest of 7, I cannot imagine what it would be like to lose any one of them. On the other hand, I am glad to see that you are still here.

Zchick1836 said:


Interesting that your doc has patients so old. My mother just started the chemo pill for MM. We were told that she would not be a candidate for Stem Cell Transplant because of her age. She is 72. Any thoughts on that?
rodney said:

ps, My stem cell transplant doc has patients as young as 22, and as old as 94 so don't give up on him as you may be pleasently surprised, one never knows.My brother was worried about me in Feb.2012, God called him home in May and I am still here.

Concerning age, the facility I go to does extensive testing on your health,your lung function must be more than 50%, and they did indepth tests on my heart. I think there is quite a bit of emphesis on your physical condition and any pre-existing conditions that effect the surviability. There was nothing said about age except the average age of his patients was 71 with the youngest being 22 and the oldest being 94. When we spoke about the requirerments and success rates I did not think age had much to do with it, however I could be wrong. I think it would certainly be worth looking into. The lung function and heart issue's I am 100% certain on as I just made the cut off on lung function, I have lots of scar tissue from an earlier issue.

I live in Canada, in Ontario actually, here, the hospitals set an age limit. I have talked to several people who are too old for the SCT ... they just took it in speed, but there are also several that have driven the 2 plus hours to Toronto, to have it done there at Princess Margaret Hospital. I would assume that each state/province would have their own set of requirements. I know that in Toronto the age limit is higher than at my clinic.

I'm 72, had MM for 4yrs. this sat. I also had lesions all over my skull. Stem cell transplant 2yrs. ago also was on Velcade, Revlimid &Dexamethasone. I'M on nothing now & doing fine so far without pain. I had lesions all down my spine w/ fractures, tumors, had 3 blood transfusions. I'M proof, it gets better. I take care of myself without help. Worse for me was chemo works on memory for awhile. I wouldn't jump to Dementia until MRI done of brain maybe water on brain, medication side effects, etc.

Madison

I saw that some of you mentioned the M-spike. I have never heard of this. Maybe it is called something different on my side of the pond. (UK)
Also you talk about stem cell transplants. I havn't heard that expression either. I wonder if that is the same as bone marrow transplant. If so, I was ruled out the day I was diagnosed LOL

In answer to RHatfield's question about expectations.

I was diagnosed in Nov 2006 and given 20-30 months. I was 51 at the time. I am now 57. I have had horrendous side effects. Died a couple of times. Was within mintes of having my left leg ampuated. Spent 4 months in Intensive Care.

I had chemo again in 2011 which had to be suspended after 3 weeks because of side effects.That was on pill medication.

I had chemo again this year. This time I had Velcade. I managed 2 x 3 week cycles but when it got to the 3rd cycle it had to be suspended after a week. Side effects again and another stay in hospital.

I was also being given the Zometa IV bone hardening treatment which has affected my mouth in a bad way. Hey ho!!! They are now removing my teeth. Boo hoo. Not too noticeable as it's just the back bottom ones. I still have 7 at the front Yay!!!

Also my metabolism has been shot and I am now very obese even though I don't eat as much. All very strange.

I hope I havn't put you on a downer RHatfield but it's probably best to know what may or can happen on the negative side.

Kind regards

Leslie XXX



Lori H said:

I live in Canada, in Ontario actually, here, the hospitals set an age limit. I have talked to several people who are too old for the SCT ... they just took it in speed, but there are also several that have driven the 2 plus hours to Toronto, to have it done there at Princess Margaret Hospital. I would assume that each state/province would have their own set of requirements. I know that in Toronto the age limit is higher than at my clinic.