Feed-back On Doxil

I am interested in any feed-back on any experience with Doxil. I have been discussing this with my doctor, and also have been doing some searching on-line. Real life experiences mean so much more to me. I will be starting Doxil treatments in January. Thank you for any response!

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I just got back from Tulsa Cancer Institute from having my 5th DOXIL chemo. I didn't think the Doctor would give me chemo because of my Shingles. The nerve pain from the Shingles is excrutiating . I advise everyone checking into the Shingles Vaccination if you have ever had chickenpox. My Doctor is going to give the vaccine to me as soon as I get over them.
Thank you for praying for me.
Vir, you are such an inspiration. I want you to know that you give me hope.

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Linda Rose, I am so happy that I can provide inspiration to you at this difficult time. I hope that your shingles associated nerve pain resolves quickly. I will keep you in my prayers and send positive thoughts your way! -Vicki (VJR)

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RoseWithoutAThorn,
All of my Doxil was in isolation and it obviously worked well for me. I found the side effects much less significant than Carbo and my hair grew back throughout the entire 4 years of Doxil. -Vicki (VJR)

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WARNING!! To all of you who are just starting Doxil please do a search on what symptoms to be aware of when they start your infusion! An allergic reaction is possible and quite frightening! Today I had my first Doxil infusion and I had a severe allergic reaction almost immediately after the saline and steroids fluids finished and the Doxil started. The nurses responded quickly and called my doctor to come immediately. I was fortunate as his office was next to the cancer center. I had prepared a list of the symptoms to look for so I could recognize them as they happen. I do things like this because of my chemo brain. I was very thankful that I had this list and that I had such great nurses and doctor. I will share these symptoms that I had. It started in my stomach it just felt strange, then at the same time I experienced a flush from my chest up to the top of my head like I was on fire and the nurse said that I was bright red. She asked for assistance from others and immediately turned the Doxil off. At the same time as the flush I had a pain in my lower back that wouldn't stop and the worst pain that I have had in my life. I was screaming with pain. It would not go away until she gave me Benedryl and it left very slowly and moved around to other places. I had shortness of breath and at one point I could not catch my breath. I had tremors all over my body somewhat like an epileptic seizure. These tremors lasted a long time. They were monitoring my heart with my doctors supervision as my heart rate and blood pressure were sky high. My doctor said that I will not be continuing my Doxil treatments. I meet with him later to discuss some other way to go. I needed to share this with you so this doesn't happen to you. I wish you all well as I move on. Hugs to everyone!

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I had my first treatment with doxil (alone) on Friday. Two days later, I still feel just fine. Some small amount of nausea, conquered with good old Zofran. A little bit tired, but a nap took care of that today. I did feel a little bit "spacey" yesterday, sort of disconnected - but that is gone today.

I plan to back to the gym tomorrow. Maybe I won't be able to keep up the whole hour - and that will be Ok - but I will do what I can.

I understand that the side effects can get worse as more treatments come, but I'll take that one step at a time. My onc. says I could stay on this drug for years, if it works - and that's all I want to hear. (I am on Co Q-10 to help keep any heart damage at bay. Onc agreed to that. There is some clinical data on how much it can help with Doxyrubin/ from which Doxil "comes"...so to speak).

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Yes, I forgot to mention that spacey feeling that always follows doxil. Also, during the 4 years that I was on Doxil, I had a MUGA scan every 6 months. Also saw a cardiologist initially who confirmed my good heart function and recommended that I get a Troponin 1 level drawn every four weeks with the blood labs that are required two days before each chemo. If there is any damage, the Troponin 1 will be sensitive to it. I got the blood labs each time. Completed four years on Doxil with no detection of heart damage! May want to ask your ONC if he will order the Troponin test.

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I had doxil with carbo as chemo round 3 for 8 months in my 2nd year of treatment. Since i had problems during a prior treatment, the slowed the infusion to 2 and a half hour. The first 4 infusions were OK, but then i started to have a rash on my hands for which they gave me icepacks, I also used icepacks during the night. Afte that i developed a rash on my face so for the last two infusions i took some heavy dozes of Decadron. It worked my CA125 started at 275 and dropped to 44 and i was in semi remission for about 6 months....

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Thanks. will ask onc. about the Troponin. I did have an echocardiogram before starting (all good). Honestly, if all stays about like this, I feel like I could do Doxil for the long run. I know - as it goes on - it could get worse though. But compared to Txol/carbo, this is a "walk in the park!"

(My first treatment was also done very, very slowly - over two hours - because of the allergic issue. No problems.)

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Thank you, Vicki -- your experience with single Doxil (over 4 years!) is very encouraging. And thank you to everyone contributing to this thread -- it's really informative. Rose

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wow I really needed to hear that

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My wife started a 6 week regiment of a single agent (Doxil) a few weeks ago. She became platinum resistant on Carbo and Taxol taken previously. For your information there are some interesting studies by 2 doctors in Sudbury Ontario Canada that seem to be pointing in the direction that at times (not all) a single agent treatment can be more effective than a double agent in certain conditions. They say the combination of drugs like carboplatin and docetaxel may provide an environment for the cancer cells to mutate and develop a defense against the double agent. Don’t know if they have studied this effect on other combination agents….. See webpage for study info:

http://www.ovarianresearch.com/content/5/1/40

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Well I had one dose. I am 2 1/2 weeks out of surgery. Within the first week of treatment they discovered a blockage in the intestines. I am still in pain but doing better. Will try for second round Doxel in February.

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Hello Shyloh,

I am really sorry that had such a severe reaction to the Doxil. They may be able to still deliver this with a desensitization protocol....awe.

Did you have pain in your butt and thighs? Sorry if I made you giggle, but seriously.

If I don't get an extra IV treatment of antinausea meds, I get a round of severe headaches, lower back pain and butt and hamstring pain. Along with really painful nausea.

I am bed ridden and cannot function.

It passes after water, sleep and 36 hours, and lots of zofran and tylenol.

I'm just wondering. I am reminded I need to tell my gyn onc office about this as it happend about 4 days after my last treatment in january.

Peace and hugs

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Iggy,
Thanks for making me laugh! I needed that! I was so disappointed that this did not work for me. I meet with my doctor February 8, and who knows what is next. I kinda doubt it will be Doxil because of the severity of the reaction. No, I did not get a pain in my butt but I am a pain in the butt right now! I hate the waiting game, and I just want to get my treatment started. It sounds like it gives you some aggravation that you obviously can deal with. You are strong so keep up with your good attitude, and I wish you well and back on your feet before long. Sending big hugs to you.

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Shyloh,
I really hope they figure something out. Staying strong with you!!!! Peace

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I took 10 mg of prozac with doxil and had amazing results right away. It was discovered in Israel by two oncologists their patients taking doxil while also on prozac were having amazing results compared to the non prozac patients. It had that effect for me since doxil often takes several months to show any response. I was also on carboplatin. It sure can't hurt. Avoid heat of any kind, don't wear jewelry. Get loose fitting undergarments, ie. Bra and panties. Go commando (little clothing and no undergarments) as much as possible. No hot baths, showers. Don't wear shoes when you can. Helps with the blistering. Hand foot goes away when you come off it but not right away, at least that was my experience.

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Wow -- so if I do Doxil next time, it looks like I should also take a small amount of Prozac! Have been wondering about an anti-depressant so the timing would be good. Does anyone know whether this is true for all or most chemos, or just Doxil? Many thanks for the tip, momanderson920! Best, Rose.

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I have to admitt also... I had Doxil as a single treatment back in 2010.... I had 8 of them and I had the horrible side affects.... Esp. in my mouth with the sores.... Then the Doxil made the cancer grow like wild fire.... I dont understnad and maybe I wont ever understand why they didnt just take me off of it after the 4th tx.... But I truly believe we alllllll react differently and we all are individuals when it comes to treatments.... So with that said.... I didnt care for Doxil and I PRAY you have some good results from it!!!!!
~alley~

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I have not had a good experience with Doxil. I have had five treatments and my CA125 has been as follows: ist chemo it went up 95 points, 2nd in went down 300, 3rd it went up 183 and 4th it went up 600 points. I have had CT Scans that actually showed small inprovements to we are puzzeled. I have had the mouth sores and rash but the worst side effects have been after about 12 days I can barely swallow solid food. I have already had an endoscopy and have had my esophogos (sp) stretched to no avail.
I will be having my 6th treatment in Feb and then we will evaluate. I seem to experience the worst syptoms so I am not the best person to follow.

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I too had a headache and nauseau after infusion, the mouth sores, blistering, hand and foot but compared to taxol/carbo was a piece of cake. Taxol made me feel like I had sludge in my brain and I was so fatigued plus low blood counts...had to take Neulasta which caused horribl bone pain all 6 treatments.

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