Doxil

beth1465 · June 2011

Had my second Doxil infusion May 19th. After the first one my CA-125 went from 704 to 1520. I was told this it typical. No side effects the first time, but this time I have a mouthful of sores and a rash around my bra area. Just wondering if anyone here has had success with Doxil and what the side effects were. And is the rise in CA-125 really typical? Thanks. Beth

Rookerbird · June 2011

Doxil Info
Hello Beth -

I just completed my 6th Doxil infusion, and have had success with it! Had a CT after the 3rd infusion, and two big tumors had shrunk by about 75%. I have another CT in a few weeks. My doctor hopes we can do three more Doxil treatments.

Doxil has a website (www.doxil.com) that is a great source of information. For mouth sores: avoid the "no no" foods and beverages, swish with a water/salt/baking soda solution several times a day, and get a prescription for Magic Mouthwash if things get really painful. I think some of the Doxil side effects are cumulative. I have discoloration on my hands and feet that gets progressively worse, and I deal with the mouth sores each month. Rashes too.

So far, however, I've avoided the hand/foot syndrome. I ice my palms and soles a LOT for the five days after chemo, and of course wrap ankles/wrists with ice packs during the infusion. I had chemo delayed once because of redness on my hands. Going forward, my doctor added steroids to my post-chemo regimen. Here's the study he referenced: http://www.sciencedirect.com/science/article/pii/S0090825804003324

Can't really comment on the rise in CA-125 because my CA-125 is always low. Last December, I had two tumors that together were the size of a grapefruit, and my CA-125 was only 16.

Hope this helps,
Kathy

beth1465 · June 2011

Rookerbird said:
Doxil Info
Hello Beth -

I just completed my 6th Doxil infusion, and have had success with it! Had a CT after the 3rd infusion, and two big tumors had shrunk by about 75%. I have another CT in a few weeks. My doctor hopes we can do three more Doxil treatments.

Doxil has a website (www.doxil.com) that is a great source of information. For mouth sores: avoid the "no no" foods and beverages, swish with a water/salt/baking soda solution several times a day, and get a prescription for Magic Mouthwash if things get really painful. I think some of the Doxil side effects are cumulative. I have discoloration on my hands and feet that gets progressively worse, and I deal with the mouth sores each month. Rashes too.

So far, however, I've avoided the hand/foot syndrome. I ice my palms and soles a LOT for the five days after chemo, and of course wrap ankles/wrists with ice packs during the infusion. I had chemo delayed once because of redness on my hands. Going forward, my doctor added steroids to my post-chemo regimen. Here's the study he referenced: http://www.sciencedirect.com/science/article/pii/S0090825804003324

Can't really comment on the rise in CA-125 because my CA-125 is always low. Last December, I had two tumors that together were the size of a grapefruit, and my CA-125 was only 16.

Hope this helps,
Kathy

Thanks! That was very
Thanks! That was very helpful information!

Beth

kayandok · June 2011

Hi Beth,
I did doxil for 8 or so infusions. It did hold my CA at bay, but I stopped due to the hand and foot syndrom that kicked in after 4 infusions or so.

I had severe mouth sores (PAIN and discomfort for days!) after the first infusion. At my doctor's suggestion, I used a product called IMPACT (a food supplement) starting a few days before my chemo for about 5 days. I did not get ANY mouth sores after the second infusion, so I continued using it while on doxil. I ordered it myself, and had it delivered to my house. I think it is available from the internet in the US. I got some rashes under my bra line, and so wore stretchy tanks (I layered a couple of them, and wore a loose vest over, as I am quite busty). I did use a steroid ointment that did take care of the rash, when I had to wear my bra. One time I so wished I had no boobs, it would have been so much easier, LOL!!!

Wishing you the best with the doxil,
kathleen

PS Are you icing during infusions? I did the icing thing, and did try to follow all the guideline on the website too.

Mwee · June 2011

Hi Beth
I only had the first 4 doses of Doxil. You've been given great advice about some of the side effects. I had to ice five minutes for an hour or so every night for foot pain. Many doctors suggest icing while infusing to keep the heavy metals away from hands and feet. Do the Doxil nurses call you? They checked in with me each week.
(((HUGS))) Maria

beth1465 · June 2011

Mwee said:
Hi Beth
I only had the first 4 doses of Doxil. You've been given great advice about some of the side effects. I had to ice five minutes for an hour or so every night for foot pain. Many doctors suggest icing while infusing to keep the heavy metals away from hands and feet. Do the Doxil nurses call you? They checked in with me each week.
(((HUGS))) Maria

No I've never iced during an
No I've never iced during an infusion. It was never suggested to me. The nurses don't call me but I can call them anytime, they are very good to call me right back and answer all my questions. I'm going to check into the IMPACT. That sounds great! My rash so far is just there, not really bothering me. I did get some sports bras, like tee-shirt bras. They seem better than a bra with a wire. I didn't have a rash until I had to go work in a clinic that had no AC. It was so hot! That night, there was the rash. So I told them I'm not going back over there until the AC is fixed! I am so hoping this Doxil will work. I want to be NED for awhile! I only got 2 monthes last summer, and the CA-125 was back on the rise. Thanks for all the great advise, I so appreciate it!

Beth

Mwee · June 2011

beth1465 said:
No I've never iced during an
No I've never iced during an infusion. It was never suggested to me. The nurses don't call me but I can call them anytime, they are very good to call me right back and answer all my questions. I'm going to check into the IMPACT. That sounds great! My rash so far is just there, not really bothering me. I did get some sports bras, like tee-shirt bras. They seem better than a bra with a wire. I didn't have a rash until I had to go work in a clinic that had no AC. It was so hot! That night, there was the rash. So I told them I'm not going back over there until the AC is fixed! I am so hoping this Doxil will work. I want to be NED for awhile! I only got 2 monthes last summer, and the CA-125 was back on the rise. Thanks for all the great advise, I so appreciate it!

Beth

Doxil company nurses
are the ones who would call me. They would call from a New Jersey phone #. Maybe my ONC gave them my name and number? They had lots of great info and checked to see what side effects I was experiencing. I want you to be NED, too!
(((HUGS))) Maria

birdwellv · June 2011

beth1465 said:
No I've never iced during an
No I've never iced during an infusion. It was never suggested to me. The nurses don't call me but I can call them anytime, they are very good to call me right back and answer all my questions. I'm going to check into the IMPACT. That sounds great! My rash so far is just there, not really bothering me. I did get some sports bras, like tee-shirt bras. They seem better than a bra with a wire. I didn't have a rash until I had to go work in a clinic that had no AC. It was so hot! That night, there was the rash. So I told them I'm not going back over there until the AC is fixed! I am so hoping this Doxil will work. I want to be NED for awhile! I only got 2 monthes last summer, and the CA-125 was back on the rise. Thanks for all the great advise, I so appreciate it!

Beth

doxil
beth,
I have had 5 rounds of doxil and have had trouble with rash and found that petroleum jelly worked great with it. Had mouth sores but not lately, think I was eating to spicy foods. Haven't tried ice during infusion.

Doxil

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