DOXIL.

[Klamato]

has anyone been on Doxil infusions. Wondering what experience you’ve had with this chemo? It s suppose to be the strongest chemo, but what about the side effects and how many treatments can you have of this drug?

[Bettybuckets]

Hi Klamato- I am on it! Since May....and it was my first IV chemo since 20 years ago...I was really afraid of it but it hasn't been too bad...that might be because they lowered the dose...not sure. But it was not as bad as the Doxirubicin from the old days which they called Red Devil...this is that drug but with a lipid layer which makes it much better tolerated. I have not lost any hair! I did have some tummy upset the first cycle but I think that was because I didn't know the proper way to mitigate with Zofran etc which they will teach you. Bring someone along that will help as they give you Benadryl big dose and dexamethasone and then I didn't remember any of the directions. Now after 5 treatments, I know that the day after if probably a day to rest...but then I just go as if nothing has happened. One big benefit is that my HFS from 18 months on xeloda has finally improved to the point where I can go shop and walk the dog. So that is a huge bonus for me!!!

My doctor picked this Doxil IV treatment for me based on knowing that I want to do my Livestrong Exercise class, ride my bike and do my paltry 400 yards swim....plus I want to go to NZ for the winter so a monthly IV was easiest for that....You do have to worry that there is a life time dose as it does affect the heart...so they do monitor us closely with echo's etc...I am hoping for No Progression on Nov 4th when I finally do the first scan on Doxil...I am not sure but so hopeful to stay on this through my travel to NZ Feb and March. Hope that was helpful!

[Klamato in reply to Bettybuckets]

Thank you so much for your good information! I had one treatment last week and didn’t have any ill effects for almost a week. For the past 4 days, I have been experiencing weakness and a distressed feelin my belly. Zofran does help, but I need 2 tablets to get relief. I don’t have much of an appetite and my throat is a little sore. Additionally, my head feels very tight! I am hopeful that the next dose won’t add to these effects since I’m a very active person but have laying down and sleeping more these days. Glad to hear that you are doing well on this drug. I also didn’t know there was a limit to the amount of infusions you could have. So what would be used next. Please stay in touch and God bless you for you info Kathy from Syracuse, NY

[Bettybuckets in reply to Klamato]

Yes let’s stay connected… my Dr says it works slowly so he wasn’t I no a rush to scan… and waited… and now I can feel my neck node is noticeably smaller so I am hopeful it is working! I am lobular how about you?

[Hopeful4Cure]

Hello Klamato. So you finally started treatment. Everyone is different with side effects. Heart test before, during and after. I have had 2 cycles, as you may note. Different centers/hospitals don't give the same pretreatment. Personally, I had pain in both legs and severe fatigue. Lose weight even with an appetite first 2 weeks. There are a lot of side effects which you can find online. I'll put up with many, as long as it is working. Hang in there. Many of us are in the same boat!

[caw517]

Hi Klamato --

I just finished my 4th Doxil treatment and have 2 more to go. As mentioned, they give you a big dose of dexamathasone and benadryl to prevent allergic reactions to the Doxil. My doses had to be upped, and I take the dexamethasone another day after chemo as I have experienced a strong allergic reaction . Absolutely take someone with you . My second treatment, we were on our way home and my throat was closing up-- a rare but severe reaction... it is now completely under control.

As far as other side effects , I haven't had any N/V as I stick to the strict schedule of Zofran and Stemetil. The farther I am into treatment, I am experiencing a lot more fatigue and have lost weight. I am upping my calories per my onc to help with energy.

All that said, I am very happy with Doxil. I have had breast cancer for 28 years and been metastatic and on various treatments and chemo for 8 years. This spring cutaneous/ skin tumors appeared on my chest and grew at a fast rate which led to Doxil. It took 3 treatments and then I began to see a huge change in the tumors' sizes. It is obvious even without a scan that it is working. I will have a scan after my last treatment and hope it has also taken care of those areas too.

I'm also interested in what could come next .

[Flowerfriend]

Hi Klamato. I began 60 mg doxil infusion every 4 weeks in February. The first 4 cycles I had several side effects, most notably HFS with blisters, big toe nail fungal infection, shooting pain and neuropathy. I lost most of my hair, had mouth sores. The fatigue may have been a little worse than with previous meds. My ONC reduced my infusion to 40 mg, the mouth sores abated and I learned to adapt and take care of my feet. Cycle 6 she added a Fulfilia injection and my WBC improved considerably. Between Cycles 7 and 8 I took 5 weeks off. I feel a whole lot better due to these tweaks after infusions 8 and 9 and am scheduled for infusion 10 on November 11. I'll have CT on November 8. Due to the hurricanes there is an isotope shortage so my Nuclear Bone Scan is scheduled for November 18, after my November 11 appointment with my ONC, which is not usual.Everyone is different. For example, I have no GI effects like you and some others. Reading of other experiences on this website really gives me perspective. I hope you experience really good results and few side effects.

[Hopeful4Cure in reply to Flowerfriend]

Hello FF. Just curious if during the majority of almost a year of your treatment what your tumor markers did. CEA and 15-3? Are you taking original doxil or the improved liopsome type, which is for patients that may have heart issues and very few lose hair. Thanks for your response.

[Flowerfriend in reply to Hopeful4Cure]

In 2005, when first diagnosed w/ BC, I had metastasis to bone, soft tissues, and liver by PET Scan. Subsequent to total radical mastectomy I underwent 4 A/C infusions (Adriamycin and Cytoxin). Adriamycin (name brand for doxorubicin) was taken off the market because of cardiotoxicity. Doxorubicin is very tough.Doxil Liposomal, is the form I am on presently and what other replies to Klamato's question refer. Hugely less debilitating.

I've been on several meds since 2005, all of which eventually failed. I'm expecting Doxil to fail soon. My last CT results were mixed. October labs included:

CA 15-3 2950

CA 27-29 3371

CEA 24

Those have all been higher at various points in time. My Alkaline Phosphatase is 681, up from 131 when I started the Doxil, but other liver enzymes have little or no increase . My Bilirubin has remained in the normal range.

As far as heart health goes I had open heart surgery in 2012 to replace my aortic valve (congenital). While taking 9 months of Xeloda before Doxil I experienced bradycardia/slow heart rate, so a pacemaker was placed in 2023.

I do not know if that had anything to do with Xeloda.

Everybody is different and I have been fortunate. I miss travel but I don't feel too bad, walk my dog at least an hour a day and live alone. So, try not to get too wrapped up in the numbers!

What doesn't kill me makes me stronger

[Hopeful4Cure in reply to Flowerfriend]

fF your response has helped a lot thank you for sharing the numbers and other information. Indeed we are all different and respond differently. You've been through a lot since 2005, nearly 20 years. That time is hopeful.

[atoth17]

I was on Doxil for about five months and it wasn’t the worst but I did have a few times that I vomited and now I have neuropathy in my lower legs and feet that won’t go away. Not to say all of this is due to Doxil, it could’ve been a culmination of the different IV chemos I did.

[RLN-overcomer]

Greetings Sister/Warrior Truthfully My I.V. Chemo treatment was no day at the beach😏. I had aggressive chemotherapy, which means the highest dose you can give to someone who had MBC almost 18 years ago😒. When I finished that chemotherapy treatment. I made up a saying. I am now going to be on Radiation Vacation🙃.It all comes down to the dosing, and ones ability to withstand the side effects. I pray your treatment will be easily tolerable GOD bless you 😇🙏✝️

[Klamato in reply to RLN-overcomer]

Was Doxil your chemo treatment? I am taking a reduced Doxil treatment, is that different than what you were given?

[RLN-overcomer in reply to Klamato]

I had 2 different Chemo treatments. I can't remember which was called red devil.