[bety]

My husband was on aranesp for about 3 years, after which it stopped working for him. He has become tx dependent. Also, his wbc and platelets have dropped to very low levels. Recently, he has been suffering from nosebleeds. I have noticed that the bleeding seems to be exacerbated when his blood pressure is elevated. Keeping the systolic pressure below 140 seems to help.
……..
husband, Ed, 87, Rars, pancytopenia, tx dependent 2-4 weeks. Is quite pale, feels very cold, but otherwise has a fair amount of energy.

bety

[bety]

Dear Eve, I was saddened by the great loss of your dad. You were there for your father these past years and have helped the members of the forum with your posts. It is comforting to know that you will continue to be involved.
…………………..

Husband 87, RARS,dx 7/03. pancytopenia, tx dependent every 2-4 weeks. Back on aranesp…seems to help a little. Thinking of you. bety

[bety]

My husband, Ed, had nearly 150 precancerous skin lesions removed (only 2 proved to be cancerous). Our new dermatologist, who is very competent, felt that most of them did not require surgery. Ed also had contact with x-ray diffraction machines for several years, which may have had a leakage problem. All the best, bety

Dx 7/03 Mds RA, cytopenia, very low counts, tx dependent.

[bety]

Dear Ellie,
I was devastated to hear about your great loss due to an infected blood transfusion. I did not respond sooner because I could not properly express my feelings. Our prayers are with you and yours. bety

[bety]

Jerry,
I appreciate your cautioning me about motrin and platelet problems. Ed only got it once a day for 2 days. Surprisingly his platelet count went up on Wed. from 100 a couple of weeks before to 108. Probably not statistically significant.
Also, I generally avoid giving or taking tylenol because it can cause liver damage. I always suggest checking the side effects of all medications, vitamins, herbs, etc. but sometimes I don’t take my own advice.
Thank you for reminding me!
bety

[bety]

Fran,
I just noticed your post. I am praying that the Vidaza reverses your husband’s AML! The port seems like a good idea. It will help save his veins and prevent more needle “sticking.” We all hope to hear good news about the new BMB results. All the best.
bety

[bety]

Carl,
I am encouraged that your counts did not decline after preventative antibiotics. Ed’s cellulitis is improving daily but pain is still wearing him down. Motrin once per day helps somewhat, but it also contributes to his sleeping much of the day. Normally, even with low counts, he is surprisingly energetic. He wants to wait another few days for his tx; he feels he is not up to the hour long travel time to our H. I think a tx plus possibly some neupogen or neulasta might help him heal faster. Thank you for your comments.
bety

[bety]

Carl,
Our H has assured us that the next 2 units tx (PRBC) will be filtered and irradiated. Two weeks ago (also 2weeks after the last tx), Ed’s hgb was 8.1, which is good for him. But his wbc was only 1.1 and gr was only 0.4. We had to delay our apptmt. with our H because Ed came down with a serious very painful case of cellulits on his lower rgt. leg. The low counts were probably a contributing factor. At one point his oral temp. reached 99.7 but is now around 97.3. The staph or strep probably entered from a bang on his leg or from cracks between toes from chronic but treated athelete’s foot.
For the past week or so, he has been treated with powerful oral and IM antibiotics. The cellulitis seems under control, the pain has been subsiding and he is now able to walk with less pain. Unfortunately, the antibiotics have probably caused his counts to decline further. Hopefully, he will be well enough to see his H this coming week. I appreciate any comments.
bety
…………..
Husband, 86, dx 7/03 MDS RAR, pancytopenia. Aranesp stopped working. Will get his 3rd tx soon.

[bety]

Caroline,

That is a good idea to inquire about natural sprays. I certainly will be interested in the instructions and the contents.

Thanks, bety

[bety]

Jim,
Thank you for the info. I will check Safeway and other supermarkets. I think there is one nearby.
bety

[bety]

Dear Marla,

Thank you for your input. I think I will try the hydrogen peroxide treatment until my husbands wbc count improves. Unfortunately, organic produce is not always easily available. We both enjoy the carrot-celery combination most evenings. An added benefit, the celery seems to reduce the need for our hypertensive medications.

Thanks again, bety and Ed

[bety]

Patti,
Thank you for your response. I will discuss all with our H. Unfortunately he is away. We won’t be able to see him for a couple of weeks. Your suggestions are very helpful, as always.
bety

[bety]

Has anyone been taken off aranesp because of a transformation to Pure Red Cell Aplasia (PRCA).
When there is a sudden drop in Hgb, Amgen Co. which produces aranesp, recommends checking for antibody reaction. The reaction affects rbc and hgb production. This is a very rare side effect, generally seen in patients with kidney disease. See amgen.com
All the best, bety

[bety]

Patti, Thanks. I very much appreciate your input.
bety

————–
husband,86, RARS dx July, 03. aranesp every two weeks not working. Started iron supplements again. Iron and ferritin levels are not elevated. Had his first tx last week (2 units packed rbc). Neupogen prn. Last hgb 7.3 Considering the low counts, he feels well…just dozes a bit during the day.

[bety]

Dear Waltraut, Could the back pains be related to the spinal tap? You might want to inquire.
All the best, bety

[Author]

Posts