[JulieMarie]

Jerry,

I’m also signed up to go to the Cleveland meeting with my mother…We’ll have to try to meet up and meet in person.

[JulieMarie]

Lynne,

My mother has been on Procrit for a year now. until recently it has helped her hemoglobin to stay in the 10.0 to 11.0 every once in a while we got it to be 12.0. For the past 6 weeks the procrit she’s not responding as well to the procrit. Since we have a few doses left we’re going to finish out with them, before switching to other drugs. My mother gives these shots to her self, and well at first they left a little bruise, but now you can hardly tell. hope this helps you out.

[JulieMarie]

Hi everyone!

Naomi gave me contact information for Connie, my mother called today and they took down her information since they are just gathering information right now, but said someone will be getting back with her next week. I”ll be on here a few different times over the weekend so if you want further information feel free to give me a buzz…

[JulieMarie]

Naoomi,

That is wonderful news!!! My mom is 5q- but has only had one transfusion so far back in January. Her hemoglobin is hanging right there at 9.0 for the past few weeks. Almost want it to drop down so they would start her on transfusions just so she could get into this clinicial trial. Do you know a number I can call Connie at so I can ask her some questions.

Thanks for everything you’ve done!

[JulieMarie]

Does anyone know if the FDA does serriously approve Revlimid on 10-7-05 how long afterwards would we be able to begin taking the drug? Mom’s dr. appointment on 9-7-05 got pushed back to 9-15-05, we are planning a trip on 10-27-05 but don’t want to delay starting this new drug.

[JulieMarie]

Neil,

thanks for the reply. Her dr. on 7/27 wants to wait until October when revlimid is suppose to be approved, eventhough there is an open case study in Scottland. I am devistated that there has been no treatment for her since her last Vidaza treatment in April. (besides the weeekly procrit) Mom has been on 60,000 dose of Procrit since last December. Would you suggest her still working as a nurse treating other patients with her hemo so low? I know a physical Therapist who says they aren’t allowed to work on patients with a hemo less than 8.0. We go back to the dr. on 9-7 so hopefully something will happen then. do you know of any side effects for Aranesp? Thanks for all your help Neil.

[JulieMarie]

Marsha,

I have never been in your shoes. The only good advise I could say is see if your employeer would allow you to work half days or if you could work every other day. Have you tried to apply for social security benifits or disablity? Those are a few things the OSU hospital has metioned to my mother who is needing a bone marrow transplant as well. Sounds like you’ve been there a while, is there another job that you could due there that wouldn’t be so physical or in as much contact with clients?

All the best, I will keep you in my prayers.

[JulieMarie]

3 Jumps for Joy for you Patti! My mom has been on procit since last fall we’ve messed with her dosage and it’s still working. Sure it’s a shot once a week but who wouldn’t do that if it beats getting txs? Hope proctit continues to work for you.

[JulieMarie]

Dear Viola,

My mom also awaits revlimid trial or the approval in October here in the US. Her dr. has her on a wait and see what happens in October right now. There is a open case for Revlimid (at least last month there was) in Scottland. Mom actually talked to the dr. on the phone for 1/2 hour he said she’d be a prime canidate, but US patients going over seas is just about improssible and well it would more than likely be after October before we’d get the ok so only if it’s not approved here in the US would we venture down that road. Don’t stop fighting just because your goverment won’t approve a drug that could cure your dad. we as caregivers have to put the boxing gloves on, stay positive and fight til the end. Our love ones seeing us fight so hard for them will give them more power to fight right along with us.

[JulieMarie]

CArrie,

Glad to hear your dad is doing better, Have fun surprising him, hopefully that will encourage him to try harder in rehab.

[JulieMarie]

Thanks for all the words of encouragement, I haven’t heard anything else in the past day, but that doesn’t mean anything since I didn’t call mom last night. I’m still hoping that they will come back with more positive news.

Keeping all of you in my prayers.

[JulieMarie]

Suzzane,

how do we find out about revlimid and the FDA approval that’s suppose to come this October? My mom is waiting for a clinical trial and we can’t find one here in the US.

Thanks!

[JulieMarie]

Lindajo,

My mother worked as an RN all of her life. She’s been off work since May 25th, but due to reuturn to work only 4hours / day / 2 shifts per week starting on July 26th until we go back to the doctor again on August 3rd.

If you can live without the extra pay check, I would just do the volunteer things. We always need Voluniteers for this or that and if you’re willing that’s great!! How ever, if you’d like the extra income try work only a few hours a day ever other day so you still have plenty of time to rest.

Hope that helps! Keep up the positive attitude and you’ll do just fine!

[JulieMarie]

Carrie,
Glad you are having a few good days. You’ve needed them. Continued prayers are going your way.

Hang in there.

Hugs!

[JulieMarie]

Sarah,

I had an MRI the other year and have been told CAT Scans are pretty much the same. For the MRI I had to lay on a table all still go into this tub thing and they did things very much like x-rays on my head,I was having vision problems and they had to rule out a brain tumor. I was suppose to have both but the MRI told the dr. enough information and I didn’t have to have the CAT Scan. I’m unsure the true difference in a CAT Scan and a MRI but if I wasn’t already in the hopsital at the time I could have went alone, but perfer on having someone with me for moral support. My parents were at the hospital with me at that time so they went down with me. I know medical issues are tough to go through, if your husband wants to go alone I would say that it would be ok, usually the tests don’t come back for a while (I think I got my MRI results the next morning when the dr. made his rounds). Hope this helps.

[Author]

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