Need to talk to someone

[franm]

Patti:

Thanks for the info. Jim has not started any transfusions yet and I hope he doesn’t need any.
The Onc he has been seeing since Dec. 05 was taking his blood every month and then seeing him. Every time we saw her she said that his blood count was just below the mark to do anything aggresive. Jim really likes her and belives in her, so what can I say?

We are taking one day at a time and praying that things get better.

Thanks for your message and G-bless your mother-in-law.

Fran

[seekay]

Fran,

Check out Patrick Quillin’s supplement for people on chemo. It contains nearly every known naturally occurring substance (including vitamins, phytochemicals), and is formulated in a two week supply for people undergoing chemo. It will help the chemo or conventional drug therapies by protecting normal cells and thus directing the drug’s effects on the mutant cells.

He has a Ph.D in nutrition, I believe, and wrote a good book, Beating Cancer Naturally.

Best,

seekay

[Judie]

You are the first person to have mentioned alternative Eastern medicine. What area of the country are you in? I live in San Diego but am concerned about going to an unknown. I am set to start Vidaza next Monday and am really fearful to use even a mild form of chemo. Until now, I have never used any form of prescriptions, so this disease has been a real slap in the face. Would love to know what you think. Thanks

[franm]

Jim and I just came home from the hospital, where Jim was given his 2nd Vidaza treatment. The nurse had to put it into his stomach. She gave him 4 shots, because he needs 100 untis every day for 7 days. Then he gets 3 weeks off. He also takes Zofran before and for 5 days he will be taking Neupogen. The Onc. said that his BMB showed his Blasts at 29, which means that 30 is Leukemia. He also has an extra copy of chromosome 8.

If you think I understand all this then you people don’t know me. I do not understand any of this. If there is anyone that can explain the numbers to me I would really appreciate it.

Thanks in advance and G-Bless you all.

Fran 72 years old and hope to get older.

[Terri]

Judie, My Husband has been doing alternative Meds with the Traditional. Bob is On Vidaza as well for 18 months now Every four weeks. So far it is holding the disease at bay, but I also think all the vitamins and supplements he takes is helping. When first dx we found a nutritionist to help.
wish you well with the Vidaza.

[Dennis]

Fran,

sounds like a lot of needles. Ouch.

I get 2 75 mg shots of Vidaza every day for 7 consecutive week days. At the end of the vidaza, on the next day, I’ll get a single shot of Neulasta, which is a longer lasting form of Neupogen.

I alternate injection sites between arms and butt. Tried the stomach once, but I didn’t have the “stomach” for it.

D

[franm]

Hi Dennis:

Well, Jim just through of his 3 day of Vidaza and he seems worst each time he has it. The Onc. wants him to take blood test every week, so she knows what is going on. All Jim wants to do now is sleep. He isn’t eating much and just feels like sleeping a lot. He had a 8:30am appointmnent at the hospital for the shots and then he can home took a shower and went to sleep. I had to get him up for some soup for lunch and then he went back to sleep. Last night I thought he had fever.

I guess this is all part of the MDS. I just hope that he feels better during the 3 weeks that he doesn’t have the shots. My 72 birthday is on the 27 and our anniversary is on the 29th. I thought we might go out to dinner to celebrate one of them.

Take care of yourself and pray for Jim.

Fran

[Dennis]

Fatigue is not uncommon. Another thing to look at is what are they giving him as an anti-nausea drug? My onc’s office used to give me compazine before each day’s vidaza to prevent nausea, and I’d go home and drag around the rest of the day, or even fall asleep. We switch the pre-medicate to Kytril, and no more drowsiness.

Just a thought — but any chemo in itself is a fatiguing thing.

D

[Terri]

Bob alternates between Arms and Legs, He doesn’t like doing it in the stomach.

[franm]

Dennis:

you asked what they are giving Jim to make him so tired and weak. He has a shot of Neupogen, just before they give him the chemo. He only has to take that for 3 days and then he takes a blood test every Monday.

Jim wants to go to L.A. to see some of his friends for 3-4 days during the break from Chemo. That would mean he would drive by himself. I am worried that that would not be a good idea yet. He only had 1 cycle and he gets 5 more cycles. Next ones start on the 15 of June.

What is your take on this idea and also, what about the Neupogen he is getting?

Thanks

Fran

[Dennis]

Fran,

My experience is limited to what they do with me — my onc uses Neulasta, which is a long-lasting version of Meupogen, and give me one of those after the cycle is over.

As to driving to LA during the break — my wife and I did pretty much the same thing last February.

D

[franm]

Dennis:

You are a lot younger and in better condition then Jim so that helps. Jim wants to go by himself and I am sure it will be real hot. The car he will be using has over 100,000 miles on it. I am sure I would worry.

Jim will see the Onc. in June before he starts his second round of chemo. He can ask her at that time about using Neulasta.

Thanks for helping.

Fran

[Jimbob]

Fran,
Use your daily experiences with Jim as a gage. How does he do arund the house? Can he stay up and active through out the day? How about driving around your neighborhood? How long before he gets tired driving and shopping?
For me, I NEED a nap about every four hours through out the day but when I drive it is no longer than 1 hour. And then I get extremely tired all at once and must stop. Any drive longer than even a half hour, I always go with another driver and they do most of the driving.
Jim

[franm]

Jim:

You are right. He is doing less and less around the house now. His white count is real low and he takes blood test every week. As for driving. He drives to the hospital for his chemo treatments but that is only a few miles from where we live. I went with him the first few times and now he has only 3 more treatments before he gets a rest for 3 weeks…I hope. I really can’t see him driving for 6-7 hours by himself. We have no plans for the rest of this month and I think I will have him wait until he finishes his second treatment before he make any decisions.

Thanks Fran

[DarlinGin]

Fran,

Your husband sounds very much like mine. Until mid-April my husband sometimes slept as much as 18 hours a day. The extremely low blood counts just left him with no energy. I KNOW it’s scary! There were a lot of days I’d keep tip toeing into the bedroom just to reassure myself he was still breathing. His oncologist felt like the sleep was perfectly normal. My best advice is to make the most of small moments. If you can’t get out for your anniversary or birthday plan a romantic little picnic on the bed. Mark the event, and cherish the time. Often I think dealing with MDS is mostly about lerning to treasure the smallest of things. A five minute walk, a conversation, a quiet game of Scrabble, you just begin to live on a different scale.

[Author]

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