[Lydia]

Yep, mom is on oxygen and has been for the last 2 weeks since she was admitted to the hospital. Sometimes the mask when oxygen levels very low – then improves to only the nose piece, etc. I think with MDS the blood can’t supply enough oxygen. It weakens all your organs. This is horrible. Hang in there.

[Lydia]

Know what you’re going through. Mom’s been in the hospital for 2 weeks now. Has had 7 units during that time. On oxygen with mask, then just with nose piece. Her one kidney has failed, the other one holding. Kidney doc said she has 3-6 months. But today they said kidney is holding – so YES – DON’T GIVE UP! Now she has contacted “VDE” (?) – in the process of looking it up. It’s a “antibiotic resistance” infection. She says it’s just one thing after the other. Doesn’t feel much like eating either – just skin and bones. So very hard to see her like this.

We take turns sitting with her. She said she “wonders how long it will take” (for the end to come). Shit.

Yes, a sense of humor helps (us too). She said she’s not ready to go yet since she just remodeled her kitchen last year and got air conditioning! She says it’s just one thing after the other.

Told us today about her kidney holding. Is this good or bad news? We don’t want to lose her, but it’s so awful to see her like this. Guess it will be up to her. She’s alive, but not living as they say. Now I know what it means.

Back to looking up VDE. Everyone hang in there! Thoughts and prayers with you all . . .

[Lydia]

How time flies for sure. Also – it sure is a small world !

[Lydia]

Thanks Mary for info. Hope your husband improves. We just have to keep trying this and than that.

We are taking her to Univerity of Michigan in Ann Arbor Friday. Will let everyone know what they say. Am going to ask them about Karmanos and Beaumont if I think it won’t insult them – especially if they don’t have any ideas for mom.

Will let all know if we go to Kar or Beau. Thanks again.

[Lydia]

How old is your dad? There has been lengthy discussions on this site about revlimid not working with exjade. Exjade has not been researched for people over 65. Revlimid was working for mom until the exjade was added. Not only did the revlimid stop working, but her white and platelet count went way down and didn’t come back up – that is until they stopped the exjade. After 3-4 months stopping the exjade the revlimit has started working again and she hasn’t had a transfusion for 3 months! When she was taking the exjade she was trans. every two weeks – the shortest time. Please search this site with all the previous discussions we have had on this subject. Unless your father is under 65.

[Lydia]

Rev was working for mom until she added the exjade. It also lowered her white count. Stopped exjade – Rev working again. As you can see from previous posts Exjade not tested on people over 65. Most have not had good results combining the two if over 65!

[Lydia]

My mom is receiving Revlimid. Have the pharmacy that distributes the Rev contact your insurance company. Let the pharmacy do all the work. Someone suggested mom do that and it worked! The pharmacy wants to distribute that expensive drug so they worked their butts off for her – several phone calls, etc. They can’t make a fortune if they can’t sell it!

Good luck – it’s certainly worth a try!

[Lydia]

Eve, so very, very sorry to hear of the loss of your dad. Our thoughts and prayers are with you and yoursat this difficult time. The love and memories you shared will never die . . .

[Lydia]

Thanks Patti and Dolittle for the replys. Printing them out and giving them to mom. I’m sure one of them will help.

Just one thing after the other – you’d think MDS would be enough! Yep, just one day at a time and be positive and we all have to hang in there! This forum certainly is the best!

[Lydia]

I’ve noticed too that we haven’t heard from him and have missed him also and all his great info and comments. It’s not the same without him! Hopefully he is away for holidays as suggested and is doing fine.

[Lydia]

Been working a lot so haven’t posted – just quickly read what’s been going on.

Patti, thanks for Exjade adverse number – will get a chance to call Friday – and also will call Rev people as haven’t done that yet.

Pat, since Chuck went back on Exjade is he trying a lower dose? Mom noticed an improvement with Rev again after being off Exjade for one month. Will check with mom on her dose (she’s 79). Hope Rev will start working for him very soon!

MDS certainly is trial-and-error and watch, wait and see. Very frustrating and scarey. Yes, let’s pray for a CURE in 2007!

[Lydia]

Pat, the results are in – mom STOPPED THE EXJADE AND THE REVLIMID HAS STARTED WORKING AGAIN! She has had a tx every 2 weeks for the last month when Exjade kicked in. It took a few weeks for Exjade to get out of her system, and, of course, everyone is different.

I’ve called the Revlimid people with her results in case it will help someone else calling – since Exjade has not been tested in people over 65. They cannot really give medical advice – hope they can relate others’ experiences.

NO MORE EXJADE!

Thank God for this forum. Hope everyone who needs it finds it.

P.S. Forgot to mention her white count went down after starting Exjade and never had problems with it before. Now they’re okay after stopping Exjade.

[Lydia]

Pat, mom was on Rev and was tx free for 3 months. Then she started Exjade and Rev stopped working. Don’t know if this is just a coincident. Someone on the forum suggested the Exjade flushes Rev, etc. out of your system. Anyway, she stopped Exjade this week and we’re waiting the see if Rev starts working again. We’re keeping our fingers crossed and praying like mad. Will let you know in a few weeks (or months) if Rev starts working again. Iron overload is a non-issue at this point since mom is now high risk for tx’s because of all her antigens.

Hope it starts working for your husband soon.

[Lydia]

Zoe, mom has the same (5) q13q33. What is the -7 ? She gave me her marrow report over the phone so I could search the web. Will check this weekend about all the brackets, etc. There is a “7” in there, but don’t know if there’s a “-” in front of it or not.

Mom started Rev several months back and was tx free for 3 months. Then she started Exjade and the Rev stopped working (?) Co-incidence? Stopped Exjade now and will see if Rev begins working or not. Someone on this forum felt the Exjade flushed the Rev (and everything else) out of your system via diarrhea! although hers wasn’t that bad. Sounds logical to me. Will update if Rev starts working again.

Can’t believe info about your bmt report! All that money and pain! What can you believe anyway? This disease is bad enough without all the other #%#$@%# everyone has to go through.

[Lydia]

Thank you so much Riley and Jack. Riley, so very, very sorry about your dad. How thoughtful of you to continue to post on this forum.

Little did I know that I would need these words myself so soon. My 98 year old grandmother passed on early this morning and these certainly help with this expected, but no less terrible event. I am printing them all to pass on to my family and others and will keep in my files.

I’m sure others on this forum with find comfort now or in the future. Thank you from all of us . . .

[Author]

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