[JSRN]

Quote:

Originally posted by marlene:
[QB] JSRN,

Why can’t she do the desferral via her port? When John had his hickman line in, he used that? He went subQ only when the central was pulled. And that’s awesome about the irritation…$5.35!

She did the IV route once before. It didn’t really help. But now I wonder if they didn’t give it enough chance. Her old oncologist always stopped things after a few months if it didn’t seem to work. He would say it doesn’t justify the cost. And apparently IV Desferraal is harder on the heart than subq. Since she is 81 and has some mitral valve issues, the new oncologist wants her to go the subq route. I will have to investigate this more.

[JSRN]

Mom saw her oncologist today who insisted she do something about the high ferritin. She said the CT showed her liver to look like cirrhosis. So she is going to try subq Desferral, 7 nights on, 7 off. Said it was less toxic than Desferral IV.
Also, the rash on mom’s port site, that she insisted mom take VFend for @ $400, (mom refused) turned out to be nothing but irritation from the stuff they used to clean the site. The dermatologist gave her prescription strength steroid ointment on Monday, and it is already less red, less blotchy and almost gone! All for $5.35!!!!

[JSRN]

Mom tried Vidaza twice. The first time the doctor said it was not working after 4 months and stopped it. But then we noticed she didn’t need transfusions as often about 2 months after going off it. So they thought maybe a delayed partial remission. Her oncologist did not put her back on it since he said he never saw success with Vidaza. The oncologist I work with said he should have put her back on it. When she started needing transfusions again more often, he wanted to put her on Revlimid. But the bone marrow showed she was not a candidate for it. So back on the Vidaza for 6 months. She still needs transfusions about 2-3 weeks. But without the Vidaza, who knows, maybe she would need them more often.
Mom did have severe nausea the first treatment. They had to start giving her Anzamet IV prior to the Vidaza. This did cause severe constipation. She did not lose any hair. Vidaza did drop her counts so she had to watch for infection. I believe she also lost some of her hearing although she claims it is just wax in her ears. Mom did drive herself during the treatments. She did experience extreme fatigue. All she wanted to do was sleep.
Mom takes Folic acid and Vit b6.
The doctor wants her to take Ex-Jade but she is against this due to cost and side effects.
She is 81 and is tired of all the medications. She has been dealing with MDS for almost 9 years now.
Best of luck to your dad. I pray it works for him.

[JSRN]

Quote:

Originally posted by marlene:

If your mom tolerates desferral, can she do it at home say 4x/week and rest 3 days? Since she has a port, that could be a good option for her.
Marlene

Mom already went the Desferral route at home. It didn’t seem to make much difference in her levels. So now she just gets it during her transfusions.
Mom thinks the port site is looking better using the antifungal cream. Even the place she had tape after drawing blood cultures last week had gotten a little red. She is allergic to Betadine. So I wonder if the new prep now being used to clean the sites is causing some of this.
Fortunately her white count is good at 4.5.

[JSRN]

Thanks for the info. I sent mom lots of info on Ex-Jade. She does not think she wants to try it. Especially after reading it can affect vision. She just had cataract surgery and doesn’t want to mess with that.
I don’t like the idea of it as she had hepatitis B 20 some years ago after a car accident and she needed 32 pints of blood back then. Too many side effects with Ex-Jade.
The only thing the oncologist says is she has iron in her liver. Well, she is doing ok for now, so why mess with it.
This week she received blood and the nurse mentioned her port site still looked bad. I said still? Apparently she has had a rash there for a few months. The doctor had looked at it a while back and said use cortisone on it. Obviously that didn’t help so I had the doctor come look at it again. She ordered blood and fungal cultures and Vfend. Well, Vfend is almost $400. So we called her back and said order something cheaper. She said no, she wanted mom to take it. We are holding off until the cultures come back. IF they are growing any fungus, then we will spend the money.
I don’t get these doctors that demand one spend money they can’t afford!
Russ, I may be checking into your oncologist!

[JSRN]

Quote:

Originally posted by JoyceDee:
jga: Thanks so much for the info on Ferritin. I had read the “warning” on Exjade. Jim has been on it a month now. He hates taking it…thinks it has affected his eyesight (blurring). Next week we will get results of test to see if there has been a drop in Ferritin.
joyce

Joyce,
Did you husband’s ferritin levels drop? How is his eye sight? Mom just had cataract surgery. She certainly doesn’t want to go back to poor vision due to ex-jade.

[JSRN]

Mom has had high ferritin levels for years. Sometimes 5000. She gets Desferral with each transfusion. She tried nightly infusions at home for a few months but it didn’t make a difference. Sometimes her ferritin level will drop to 3000 with no treatments. Her oncologist knew she did not want to take Ex-Jade. Now her new oncologist insists she take it. Even went as far as calling ExJade company and placing the order. The cost is way too much, over $5000 per month. Not to mention the side effects. MY thought is she has had the high levels for many years. They fluctuate greatly. Even if she took Ex-JAde, how are we to know if it was really working. She is doing well off of all chemo and just getting blood every 2-3 weeks and Procrit weekly. I don’t like adding a drug that can make her feel bad again. She lives independently, and at 81 years young, wants quality, not quantity.
Can anyone share their ExJade experience?

[JSRN]

Mom has been receiving blood transfusions for over 8 years. She now gets them every 2-3 weeks. Stretching it out to 4 weeks causes chest pain and too much fatigue. She does have high ferritin levels. Which her new oncologist wants her to take Ex-Jade. (Oncologist of many years retired). We are against this due to the cost and the numerous side effects. She took vidaza and it about killed her. Right now she is doing well. Does not have too much fatigue and her other counts are good. Sometimes one has to put their foot down and do what is best for them. Not what the doctors want you to do.
This doctor is an @ss! I hope something came of your reporting him. His conduct was unacceptable.

[JSRN]

My mom completed 6 rounds of Vidaza and was so fatigued that she didn’t want to do anything. She even talked about giving up. Then she fell and broke her pelvis and elbow. Now she is determined to get back home, drive again. Even with her blood count dropping again and knowing the Vidaza isn’t working, she asked me to save a piece of some plant she has so she can try to start it next year.
So there is always hope. And yes, One day at a Time.

[JSRN]

Quote:

Originally posted by Debster01:
Hey JSRN-her hgb is AWESOME! Definitely encouraging. Good for her to keep trying the Vidaza. Will pray the doc will eat that crow!!! Deb

Well it was nice while it lasted. This week it is down to 9.2. On the bright side, she is no longer confused and definitely working hard at rehab.
Will see her oncologist for the last time on Monday and get 2 units. So I guess we are back to just supportive treatment with transfusions as she doesn’t qualify for Revlimid.

[JSRN]

Deb,
Mom’s count went up to 10 the day after surgery. But one day later, 8.6 and the next day 7.4. To add to this, she was still very confused. At one point we were considering Hospice. But over the week end she became alert and oriented again. We are waiting to see what the blood counts do this time after the transfusion. So far she is holding around 9.6. Every day is an emotional roller coaster ride. Still no idea when she will go to rehab and I wonder how will she do if her counts continue to drop and she is expected to do 1-2 hours of rehab a day in order to qualify for “skilled” care for Medicare to pay to costs.

[JSRN]

Sandi,
I am very sorry for your loss. My mom is fighting this terrible disease also.
God bless you.
Sue

[JSRN]

I know what you are feeling. My mom fell Saturday night. She broke her elbow and today discovered her pelvis is broken in many places. Her Hgb had been 9.6 last week and was 7.4 when she was admitted. She was very confused and I asked for a CT of the head. The admitting doctor said her confusion was from the low Hgb. I said listen to me doc, mom has lived with a low HGb for years, this confusion is not from low Hgb. So she ordered the test. It did not show any bleeds so that was good. Monday her count was 9.9 after 2 units. Today it was 9.4. So the doctor orders blood for after the surgery. I told her no! I asked her if she understood MDS. I told her this was the normal course of the disease for mom and she did not need blood until below 8. I asked her to let the oncologist deal with the MDS treatment. I don’t think she cared for my butting in but too d@mn bad!
Be your own advocate and do your own research. And don’t be afraid to speak up! Mom’s count went UP after the surgery so the blood order was stopped.
But mom is still very confused. Her friends said she has lost the will to live the past few months even before this accident. Now that she won’t be able to drive and will go into a nursing home for several weeks or longer I just worry she will give up.

[JSRN]

My mother is afraid to start the Revlimid since she read about the side effects of blood clots.
At this point she is wanting to stop all treatments. She is tired of dealing with this disease.
Let us know what the second opinion tell you.

[JSRN]

Another spammer:
https://www.mds-foundation.org/ubb/ultimatebb.php?ubb=get_topic;f=1;t=004795

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