Forum Replies Created
-
AuthorPosts
-
PhyllisAMember
Dear Susan,
I am so sorry for your loss. My husband, Ron, passed away on July 5…so my heart goes out to you.
I’ll say a prayer for you.
Phyllis
PhyllisAMemberDear Friends,
Ron made it through the first round of Chemo with what I think were minimal problems, but because everyone is different we didn’t know what to expect…he had some nights that he was very sick, but he has kept a very positive attitude.
He had a bone-marrow biopsy about 2 weeks ago and we were told it was free of leukemia cells…and we thought things were going well. Sunday night he did have a slight fever and they immediately started blood culters and tests. Our bubble was burst yesterday when the doctor said that the blasts were back and they wanted to do another bone-marrow biopsy right away…we haven’t received the results yet, but the doctor indicated yesterday that he would need more chemo.
So right now we are on pins and needles wondering just what the plan will be this time. Hopefully they will be in tomorrow and tell us.I’ll keep you posted as soon as I know.
Thanks again to all for your thoughts and prayers.
Phyllis
PhyllisAMemberDear LucyM,
My husband was just diagnosed 4/24 with AML. He is on a clinical trial called Pharmacokinetics…which is a combination of Amonafide and Cytarabine (Ara-C). He just completed his first round yesterday 5/5. He had 3 nights that he was very sick, but seems better the last few days. However, the doctor told him that usually about 10 days after the beginning of chemo treatments would be when he would probably not feel very well and to expect to lose his hair. BUT he also said all patients are different with their reaction to the drugs…a young woman a few doors down who came from the same area as my husband grew up breezed through the first 30 days, but unfortunately a few months later is back. I don’t believe she was on the trial my husband is…but had undergone Chemo treatments.
So I am hoping that next week won’t be as bad as it might be.
I am so amazed that he has maintained such a positive outlook on all of this…but he didn’t have a choice really…he had to have treatment right away.Good luck,
PhyllisAPhyllisAMemberThank you all for your responses. We did finally get a response from the hemotologist’s office in Ann Arbor. Ron has an appointment on Monday…couldn’t get in before then because the doctor is not in this week. We are to take all the films from scans and x-rays that were done here at the local ER, plus he will have more blood work done there.
Ron has run a low-grade fever off and on before, but this has just not gone away, plus his WBC has always been within a normal range, but with the last few tests it has continually increased. Yesterday his temp went up to 102.2 and never went below 101. Needless to say he has no energy. They also told us if things got worse to bring him to the ER in Ann Arbor.
Thank you again for your responses. We are so glad for all of you and the forum…it helps a lot to be able to check with people that have had experience and that care for one another.
All our best to you,
Ron & PhyllisPhyllisAMemberViola,
I was in the clinical trial reserch @ M D Andersons in Houston TX and started the revlimid 9/11/03 thru 11/25/04 and had been getting TX’s every 3 wks prior than was dropped from the trial because I had a blood clot in my lung and later had to have a TX after going 52 wks without one had some side effects but nothing I couldn’t deal with going to be going on vidaza soon as procrit and nupogen didn’t help and so back to getting TX’s every 3 wks
GOOD LUCK & BEST of HEALTH to your DadRon from Michigan
PhyllisAMemberHi Patti
One hour is not to bad at all thats what mine is appx and dont forget you can also deduct so much per mile on your medical expenses for the year
The pharmacy receipt shows $7,750.00 for the last 30 days supply of 20000/ML procrit I got and the 10 preloaded syringes of neupogen shows $2,211.00
BUT I have a 18yr old BCBS medical plan that has just $10.00 copay so I am very very lucky even if I do have to make those $595.00 a month INS pymtsPhyllisAMemberHi Patti
Between my wife & myself we do our own injections at home of both the procrit & neupogen now my neupogen has 300mcg on the box and the syringes are pre filled w/.50 so I have to drain 1/2 of it out
Dose your M I L do her own injections or someone else in her home? or go to the doctors? How far away is the Drs?
I get to go in tomorrow for a TX made it 31/2 wks this time
Well GOOD HEALTH to your M I L & you & your family
Ron
PhyllisAMemberHi Sandy
I have been doing injections of procrit (20ml)since 8/15 daily the highest my RBC has got was 3.68,RBC@3.07,HCT now 25.8 &plallet down to 66
FRI I started the neupogen injections but twice a week and low dose @ .25 your husband is the only other person i have been able to find on this forum thats doing these two injections wishing you both good healthRon from MI
PhyllisAMemberHi Lynne
I did procrit injections once a week in spring of 2003 with no luck Now I am going to a differant Dr and he started me @ 10M for 30 days and now I am doing 20M a day But still getting TXs appx every 3 weeks like they everyone reacts differantly GOOD LUCK to you
Ron from MIPhyllisAMemberDear Sigit
I am also very,very sorry to hear about you loss
as a lot of us we also have lost family members these past years
Ron from Michigan
PhyllisAMemberSarah
I have had a total of 27 TX’s and tx #25 I had a reaction = rash & 102 fever they gave me Benadryl so last two times I take the B withme as I have to go in tomorrow (hgb @7.4)
GOOD LUCK to your husband & GOOD HEALTH to everyone
Ron from MichiganPhyllisAMemberHi Karen
THANK YOU so much for doing this for all of us
GOD BLESS
Ron from MichiganPhyllisAMemberDear Karen,
Please add our names to your letter and thank you for writing the letter.
Best wishes,
Ron and Phyllis AemiseggerPhyllisAMemberthank you for doing this and YES if not to late add our names
Ron & Phyllis Aemisegger Sr of Michigan
PhyllisAMemberHope it isn’t too late to add our names to your letter.
Ron & Phyllis Aemisegger, Michigan
-
AuthorPosts