[JSRN]

Mom’s BMB came back to show she does have -5Q chromosome abnormality. So she is a candidate for Revlimid. She just finished her 6th cycle of vidaza. Her HGb was hanging there at 10.9, 10.7, 10.2 then dropped in one week to 9.2. She is not sure she wants to start the Revlimid. She told me the day of her BMB that she was thinking of stopping all treatments. She is tired of feeling tired and sick of being sick. Her life is going to doctors and hospitals, getting blood work, blood, chemo then coming home to sleep. Her oncologist had a fit, as I knew he would and said why, your counts are doing okay. She keeps dwelling on the cost of the Revlimid and the side effects.
Maybe the Vidaza will kick in and she won’t have to make the decision.

[JSRN]

I checked into mom’s AARP plan Medicare D. After all the initial costs, the gap payments, she will have to pay close to $10000 and then the cost would be $375 per month. Come January, it would start all over.
The cost is ridiculous but how can one not give it a try when it is showing to be so effective!

[JSRN]

Quote:

Originally posted by Terri:
Oh and No Port they can’t get his Plts high enough even with transfusions they don’t come up enough a six pack as they call it only brought him up a few points and The are telling me if he started bleeding during the procedure it is not an area they can put pressure on to stop the bleeding with his plts so low.

What are his platelets? What do they want it to be? Above 10, 30, 50? I don’t understand this. Have they tried giving him a 6 pack the day before and then the day of the surgery, give him more? Some people need more than a 6 pack. I have given numerous 6 packs to patients in order to get them prepared for a procedure. Sometimes the procedure just has to be done. I think your husband needing a port is a necessity.

[JSRN]

My mom is also on Vidaza and it was a God send when she could get it IV route. She has had a port for 5 years.
As a RN I can tell you the port has less risk of infection. Both picc and port can become infected. But the picc is an open source. The dressing has to be changed weekly, if not more often. The port can’t be accidentally pulled out. The port can not be seen where as the picc is in the arm.
I have never had a patient with low platelets have a problem with bleeding from accessing a port.
Just be sure Bob receives platelets the day of his port. He won’t regret getting it. Every patient that fought me on getting a port, after getting it in said why did I wait so long?

[JSRN]

My mom is also on Vidaza and it was a God send when she could get it IV route. She has had a port for 5 years.
As a RN I can tell you the port has less risk of infection. Both picc and port can become infected. But the picc is an open source. The dressing has to be changed weekly, if not more often. The port can’t be accidentally pulled out. The port can not be seen where as the picc is in the arm.
I have never had a patient with low platelets have a problem with bleeding from accessing a port.
Just be sure Bob receives platelets the day of his port. He won’t regret getting it. Every patient that fought me on getting a port, after getting it in said why did I wait so long?

[JSRN]

Actually low platelets can cause fatigue. So can low whites. It is probably a combination of your counts and the Vidaza.
My mom is on it and lately all she does is sleep. She never goes out anymore except to the doctor.
Today he wanted her to stop it. But then he said one more course. And he wants to do a bone marrow biopsy again. I am going with her next visit so I can get some answers. Just trying things for the sake of trying things is ridiculous.

[JSRN]

Mom receives Anzamet IV in the office before her treatments. If she took a pill before she left the house, she would have to pay for it at great expense.
Check into having something given at the office so Medicare will cover it.
Compazine is a good drug. Some say it works better than Zofran. I know personally, Zofran did not help me. Phenergan pills are great, but do cause lots of drowsiness.

[JSRN]

My mom started the IV route Monday. Her doctor wanted her to take it for 5 days. The drug company says 7 days on, 21 off. So he agreed to the 7 days. You certainly have to do your own research with this disease!
So far so good with no side effects from the IV route. She did need a transfusion today after only 2 weeks. Whites up to 2.6 after they were down to 0.6 last week.
Maybe this round of Vidaza will be successful.

[JSRN]

My mom is back on Vidaza. She took 4 rounds last year with no results until after the oncologist stopped it. He is not a fan of Vidaza. But then we started seeing results. She went 11 weeks between transfusions. But her counts are down again so he agreed to another round of Vidaza. Mom gets very constipated with it. She is trying to keep ahead of it this time with laxatives and stool softeners.
Just hoping it does some good this time. (The Vidaza).

[JSRN]

My mom worked with my dad who owned a printing business. So she was around numerous chemicals, for many years. She also was in a car accident that killed my dad. She spent 3 months in the hospital and for about 2 months, received daily x-rays. She took DES, a hormone while pregnant with me and my brother. That has been found to increase breast cancer, which she had in 1989. She never took any chemotherapy but did take Tamoxofin for 7 years.
Her brother died of leukemia and I recall he was told he had a preleukemia. This was all before MDS was really known. After he died a group of people he worked with asked my aunt to go in on a class action suit as most of the employees where he worked developed leukemia. He worked for an elevator company, repairing them, also working with many chemicals.
It would be nice if they could come up with a link to this d@mn disease. Nicer if they found a drug that really worked!

[JSRN]

Deb,
I am so sorry to hear about your father. My mother is on her second course of Vidaza. She is 80 years young. I also fear she may be doing more harm than good. She had 4 courses of it last year. The MD said it was not working as her counts dropped (platelets and whites were always okay before Vidaza) and she needed blood more often. I was ready to discuss Hospice when miraculously the Vidaza kicked in and she went 12 weeks without blood and her other counts came up. Now she needs transfusions every few weeks so she is back on Vidaza. He wanted to start her on Gleevec but the cost is so high she said no. He has seen no success with Vidaza. The oncologists that work at my hospital have seen good success with it.
What I have learned from this forum is every one responds differently. My prayers are with you.

[JSRN]

Sandy,
I am new to the forum so wanted to express my sympathy on your loss.
Please let me assure you that as a nurse of 30 years, and still working on med-surg/oncology units, that it was probably appropriate to give your husband morphine. Morphine is used not only for pain but also to help a patient when they are having labored/difficulty breathing. Pneumonia can be a painful disease. It causes lung pain. Even if a patient can not express they are in pain, there are things we look for such as changes in vital signs, skin temperature/moisture and especially respiratory changes.
You have every right to question the doctors, and hospital if you have concerns over your husbands care. Contact them to put your mind at ease.
God Bless you.

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