We've Had a Few Set-Backs
 

Hi Everybody,

As to Arnie's health, Friday he took his 10th Sutent pill and looked and felt awful. He had terrible fatigue, shortness of breath, was sleepy but couldn't sleep, hungry but couldn't eat, mouth ulcers, plus a few more side effects that I won't go into here. I told him to stop taking Sutent (which is what his oncology nurse told him to do) until he could talk to her Monday. Daily, his symptoms have been improving. However, he's not back to normal yet. He talked to another oncology nurse at UVA (his was out of the office), who talked to the doctor and then called him back. She said to stop taking the drug for a week, and that she would have his nurse call at the end of this week. They will lower the dose; he wants to take the 25 mg dose instead of the 37.5 mg dose. I now question why they start their patients on the 50 mg doses first instead of the 25 mg and work up from there. He has to get blood tests done Monday, because his liver enzymes were high.

I got into an MS flare, probably due to stress and the heat. I called my neuro and he ordered a 3-day course of IV SoluMedrol, given by home health RNs. This afternoon, I'll receive my 3rd and last dose. As soon as the nurse leaves, I'm taking a long shower and washing my hair. I've been taking sponge baths because I'm not allowed to get the port site wet. It's located just above my left wrist, and so far hasn't caused any discomfort. The nurse said that she would like to call my neuro about setting up home physical therapy twice a week to help me with my balance problems. I asked her to please find out what my co-pay would be, as I only have Medicare. She promised to do so. Maybe if I do this, it will help.

Maryann -- I am sorry to hear about your setbacks. Hope they can get your dh meds adjusted, and that the steroids help you.:hug:

Oh dear. You are both in my prayers.

I'm so sorry, both you and Arnie are having a setback.:(

Prayers and good wishes for a speedy recovery and med resolution. :hug:

I'm so sorry. I hope you'll both get past this soon. :hug:

Prayers for you both.

Definitely praying for both of you! I hope the two of you get to feeling better fast.

Both of you sick now. That stinks.

I hope your meds kick in soon and your husband gets the right dosage of the right medication to cure him. I think they give the bigger dosage in the beginning to saturate him and then taper down.

When it rains it pours Maryanne, even with the hot sun out. :grouphug:

:hug: Maryanne :hug:

You and Arnie are both in my prayers.

Prayers and hugs for you and Arnie, Maryann. Take care and feel better soon. :)

keeping you both in my prayers...gentle hugs to you both.

Hope you both start to feel better soon. Know someone in SEVA is thinking of you both!

:hug::hug::hug:

Wow, Azo, sounds like you're walking a tightrope. I hope they can get it figured out just right. Hugs and blessings to you both. :hug:

Maryann, so sorry you and your DH are going through such trying health problems.
My thoughts and prayers are with you.:hug:
Linda

Maryanne, so sorry to hear you and Arnie are both suffering...I pray for both of you to feel better soon...hope the IV settles your MS down, and Arnie's docs can shrink those bad boys without doing damage to your Arnie:hug::hug:

hugs and prayers. you are in my thoughts constantly. :hug:

Hi Maryann, sorry to hear about all of the stress and setbacks. I'm sending you positive get well thoughts for both of you. :hug::hug::hug:

i'm sorry to hear that you and mr maryanne are having these problems.
i'm sending my get better wishes your way.

I really hope things get better for you guys soon! You deserve a break.

Thinking of you both