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Margaret

Just caught this discussion today. Sorry to hear about your trials. Even working with your regular insurance company is a mind boggling challenge.
When did your husband quit working? It’s usually a year for government aid and 2 years for medicare to kick in.
Besides the suggestions mentioned above you might also check into your life insurance. Some policies have cancer clauses and offer a variety of assistance there also.
Also have you talked to your oncologist and asked if he can get samples to help.
Hope these thoughts help. Wishing you and your husband the best possible
gj

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Suzanne

You might want to contact BMTINFONET they could actually put you in contact with someone who has gone thru this proceedure and can answer your questions.
Wishing you the best.
gj

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Carolyn

Yes your hubby joins a group of us who jump from the frying pan…
What kind of NHL was he treated for? Also did he do an auto or allo BMT?
I was dx with mantle cell in March 05 and had my bmt in Nov 05. All went along well until March 07 when up pops the MDS. I have been and continue to be treated ever since. Started with one round of Vidaza which failed me and then have undergone 6 rounds of Dacogen and am doing prety good. My only other issues is varying levels of fatigue.
Keep us up to date on your husband’s progress. Also if you have any questions you’ll find this board friendly and helpful.
Wishing you the best
greg

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Heather

Glad your dad is doing well and is handling the Dacogen as things go along. It’s hard to predict how his reaction will be. Since I’ve been treated with Dacogen, each time between treatments has been different. My counts always are drifting on the low side but things have progressed. As long as the doc says it’s OK for your dad to travel, let him enjoy his life.
I’ve had to travel several times recently and as long as I wore as mask on the plane the doc was OK with it. He gave me back up scrips for antibiotics in case I spiked a fever and let me go. Just avoid crowds and kids. So warn your dad about “mosh pits” but enjoy his life.
Hope you all enjoy the cruise and have a good new year!!
greg

[gj]

I should be starting my 6th round of Dacogen later today. From my experience the fatigue usually begins about a week later and last about a week. Each person is different in their reaction. For the first few rounds my counts really dropped around day 20 post treatment, I got an infection and spent a couple days in the hospital on antibiotics. There is another patient in my onco practice and he and I are running about the same. For the last 2 rounds, no infection or anything. A lot of the fatigue may be caused by a drop in your blood counts and as they begin to rise, your fatigue will begin to disappear.
Good luck in your journey
gj

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Bob

Vidaza failed me, had a reaction to it and was switched to Dacogen. Planning on round 6 this coming Monday. Another patient with the same doc and I are follwing the same route. My continuing problem is that my blood counts continue to run low, usually just outside the realm of normal, as my new norm. It has dropped my blasts and kept them down, so I guess things are working.
Best of luck to you.

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I’ll be starting my 6th round of Dacogen this Monday, if my counts are good enough. I’ve been on the 5 day route and was told that it was more a matter of preference. The dosing takes about an hour for 5 straight days. I’ve had no immediate reaction to the drip as long as I get enough hydration during the treatment. After treatment my blood counts drop but then ever since I was dx with MDS, I run low blood counts and have a significant amount of fatigue but keep on going. There is another patient with the same oncologist and we are pretty much mirroring each other. Doing dacogen and then waiting for the blood counts to nadir and come back roughly 4-5 weeks out and then the next dose.
I was switched from Vidaza beacause of a bad reaction.
Hope these thoughts help a bit. WIshing you and your dad the best.

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June

Just a thought but if he will be long term with the transfusions and revlimid have they considered either a pic line or a port. Either way they have a target and only one poke.

gj

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Jane

Sorry we have to welcome you back to this forum. Wishing the best for your cousin and that he finds a successful match.
I can sympathsize with you as we just buried a special cousin last week who passed from DLBC.
My prayers and BE SSTRONG
gj

[gj]

Interesting question. I will definitely have to read the article.
My question would be if the blood being transfused is to replace volume then wouldn’t the body produce the oxygen necessary for the hemoglobin to work properly? Since the NO is being delpeted at a rate that it is gone by the date the blood expires, isn’t the NO there to in a sense “jump start” the system?

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Bob

I agree with a lot of the above people that you should seek a second opinion from someone familiar with MDS. With the changes in your blasts you could also mean a progression to AML and needs to be treated.
There are too many unanswered questions with your situation. If your doc is reluctant to recommend someone you should check other hospitals, or I believe there is a Mayo clinic in Arizona. Check the NCI for a center of excellence or look up Revolution Health to see if they have a recommendation for an oncologist in your area.
Wishing you the best.

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Suzie

I just got out of the hospital yesterday from my monthly visit post Dacogen.
I’ve had 3 treatments of Dacogen and approximately 20 days after I develop a fever(between 100.5 and 101.5) and a sinus-like infection. It involves a couple days in the hospital in isolation with IV antibiotics and then a week of at home meds. During this time both my WBC and Granulocytes drop to around .75 for WBC and .2 for Grans.
There is another guy with MDS also and he and I are following the same routine. We are both being treated by the same doc and have almost mirrored each other in out reactions.
This might be the reason why they are hospitalizing your husband if this is the first time.
Just some thoughts for you. Hope this helps. My best to you and your husband
greg

[gj]

My sympathy on your mother passing.
If you’re still questioning the issue of the rituxan, I just came across a discussion from the LLS group. Seems rituxan has been around for about 10 years now. A good site to check out the discussion on rituxan is http://www.nhlcyberfamily.org/treatments/rituxan.htm There are some excellent research items there.

[gj]

I found this question interesting and contacted the National Marrow Donor Program to see what they do.
They do not collect marrow in advance and store it.
That’s all they said.
greg

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SORRY EVERYONE I CORRECTED THE LINK! MY BAD!

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