All About Doxil
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SusanR, You have such a remarkable history
Is it right that you took Femara alone for three years and then Faslodex alone for five years?! And then I/F for another four years?!
It's such exceptional endocrine sensitivity, and ER+PR- cancers are supposedly not so endocrine sensitive, Any supplements or other uinsights to why you have been so responsive? Any genetic testing on your cancer?!
perhaps your cancer is unable to grow on liver or lung?! wouldn't that be great- they should study your cancer- what does your MO say?!
sorry for all the questions,but why did they choose doxil next?
thanks!!
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Hi Susan! Welcome to the Doxil thread. Wow, 11 years! That's amazing. I have bone mets too but also to lung, liver. Everything seems to be stable right now on Doxil. I have been on it for over a year. My TMs are in the normal range again this month and my scans have been stable. I too have fatigue - goes with the territory! I do get the Aranesp shot when my hemoglobin goes below 10.0. I haven't had any severe nausea with Doxil, just a little queasy stomach about 4 days afterwards but a Zofran makes it go away. The only other SE I have is a carry over of H & F. It's not as bad now as it was in the beginning on Doxil as my MO reduced my dose and that has helped. So far, so good! We're going to see how far I can go on Doxil!
Good luck with it, I hope it helps you!
Cindy `
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Cure-ious, I hope Susan sees your post and answers. Those are all good questions. I would like to know too.
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Cure-ious I went 6 years from my original diagnosis to my Stage IV bone Mets. I then went on Femara which held me stable for 3 years and then Faslodex which held me for another 5 years. It really is all starting to blend together after that but yes, I was on Ibrance and I believe Femara which failed immediately and then my Dr gave up on the anti hormonal after that. I was switched to just Xeloda and that failed immediately also. Then IV chemo Abraxane for about 9 months got me back to 2 stable PETs and some severe neuropathy and a lovely “chemo break” for an entire summer! Then after progression I went on IV CMF which failed immediately so back on the Abraxane since most of the neuropathy had resolved and we hoped it would really knock back the progression. I gave the Abraxane all I had but about 7 months into it and with a stable scan, I was starting to have intense leg pain and losing the use of my fingers so we had to give it up for good. In Jan of this year I started one that for the life of me I can’t remember right now but it gave me the worst GI distress I’ve ever had and ended up not working anyway. I have now had 2 doses of Doxil.
I truly have no words of wisdom or sage advice about anything special I have done or not done. I worked full time for 3 years after my Mets diagnosis, and have been blessed with good insurance and the ability to leave a great career that was extremely stressful to fully embrace my “other” self. I’ve traveled, cared for grandchildren when I could and went to lunch with friends whenever I could. No special diet or exercise regime. No supplements other than a good multi vitamin. I don’t believe I’ve done anything different that has allowed me to still be going 11 years into bone Mets that are becoming more aggressive with each year now.
My tumor markers are a good tool for me as they react in sync with my scans. Before starting the Doxil they were the highest they have ever been. I’m hopeful this one will work for me as I’m starting to feel like I’m blowing through them pretty quickly.
I initially had BRCA testing done and am negative. As far as any other testing or biopsies, there have not been any good sites to try to obtain a useful sample. Last year I had kyphoplasty with ablation on 3 vertebrae for compression fractures, but attempts to get samples of tumors were futile.
I would love to update my status on here but can’t seem to figure out how!
I’m off to bed now, it’s been a long day! Goodnight ladies, sleepwell.
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Well...I spoke to soon (as usual) about my bilirubin being low...and thinking..hoping it was because the doxil was working... My MO said yesterday that what was making my Bilirubin SO high (2.9, 3.2 etc) was most likely the Xeloda. I know shes most definitely right because my sacrum is hurting still and periodically my liver (where the tumors are, down low) still
So once again I am not having high hopes now for the Doxil either. We decided to stay on the every 2 weeks infusion instead of once a month because I am tolerating it really well...I should have known for a chemo to literally be this easy with almost ZERO side effects, it wasn't going to work. I am not giving up all hope...just being realistic. Will Cross post in Doxil.0 -
How is everyone here doing? It's been so long I am not sure who is still active on this thread. I'm cruising along dealing with good 'ole Covid effects. Haven't got it and still don't know anyone who does/did. Still on Doxil once a month and blood work looks good. I have two lesions on my liver that my MO is keeping an eye on. Bone mets are stable, no new activity.
Hope you are all having a good summer! Check in when you can.
Cindy
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Hello I will be starting Doxil here soon.
er/pr- hr+ since Jan 2015
lung met of left
just got out of hosp due to fluid build up around lung and heart. This biopsied negative. Thank goodness. was in ICU for 7 days my bp crashed. i had only been on enhertu for 2 months so bye to enhertu.
i get echos every 3-4 months. ejection fraction is always great.
anyway still in some recovery process here i will be back in few days
Hugs and Blessings to all.
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I may be starting this chemo soon- anyone still on it or started it?
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Hi Nkb,
I don't post very often but saw no one has replied. I've been on Doxil for nearly 5 months now. Happy to answer any questions you may have about my experience on it.
Pb
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Hi Pboi- thanks for answering! I am wondering how you are doing?, pre-meds?,how it has affected your hair?
Do you have a port? Did you get a MUGA scan or are you having any cardiac monitoring? did you MO say anything about how long you will be on it or how much more you can have in a lifetime? I had it it 2012 first time around.
Do you know why your doctor chose this chemo?
thank you !
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Nkb,
At mets diagnosis, my liver was full of cancer. At that time, both my MOs (one here at home in N. CA and second opinion at Stanford) suggested a taxane. Taxol worked well for me and for nearly 1 1/2 years. Bone mets then appeared, so I went to Ibrance for awhile until it failed, and then on Xeloda when I started to see the first signs of ascites. Both MOs agreed an anthracycline (Doxil) was worth trying.
I had a 3 month scan in Nov and the ascites is nearly gone now, liver mets are better, and bone mets are stable. Overall I'm doing ok. Yes I have a port. Only premed I have is Zofran PO before infusion. For the first few days after infusion, nausea is a problem. Fatigue is a daily problem. This drug is kind of time-released I believe, so infusion is only once a month. Problem with that is the side effects, nausea for me come and go all month long. The fatigue too builds up over time. After my 3 month scan determined I was going to stay on this for longer, I received a MUGA scan to check that my heart was tolerating it ok, and I started a heart protectant, Zinecard. It's given before the Doxil to help protect the heart. I have heard people staying on this over a year, and have even seen one person on it nearly 2 years, so it might just depend on how your heart is tolerating it.
The hair question is hard to answer. I lost all my hair after having taken Taxol so long. It grew back some during Ibrance and Xeloda, but not enough to cover my head. When I started Doxil, what little hair I had fell out again, and has grown back some. So most of these past few years I've been using a wig.
Honestly, it worried me when I saw so few people on these boards on Doxil or having great success on it, but I'm thankful I'm still able to do most things while on it. Hope this helps, and if you have any more questions, feel free to ask.
Pb
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thanks Pboi-
Sounds like you have been through a lot with the chemos. Interesting about the heart protection medicine- I will ask my MO about that. I am glad the ascities calmed down as it sounds uncomfortable.
Yes, it seems like few people are on it or for not very long. I am not sure why my local MO mentioned it first- most effective? Only once per month not sure
How have your labs been? ANC issues or anemia?
Did anyone say anything about cold caps for your hair
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Thankfully I have not had any problem with ANC or anemia issues.
My first chemo was Taxol and at the time I was preoccupied with icing my feet, hands, and eating ice chips to prevent neuropathy. Icing seemed to work for me as I was on Taxol for over a year I believe before neuropathy started to set in. I didn’t see how I could manage icing and the cold caps and my mobility was more important to me than my hair.
Since Taxol my hair never really returned, or is too thin to cover my scalp, I figured why bother with cold caps with Doxil, not much there to save anyways…lol!
I have minorneuropathy from all my prior treatments. Some do get neuropathy on Doxil, so I do ice on Doxil now. I find the more vigilant I am about keeping my feet cool at infusion and at home for a few days here and there afterwards, the less neuropathy I feel.
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pboi- yes, I have neuropathy as well from various treatments. Taxol 10 years ago and a bit worse with Ibrance and Xeloda. I will look into the ice.
I am relieved to hear that you don’t have much anemia or ANC issues- since I have bone marrow Mets also I seem to have a bit of a fragile bone marrow.
How long do the infusions last
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For icing I use the Natracure socks/ice packs from Amazon, then hold a frozen water bottle with both hands, and eat ice chips to help prevent mouth sores.
The Zinecard heart protectant is an IV infusion that runs about 20 minutes, then the Doxil infusion is an hour.
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Pboi- just checking in to see how you are doing?
I haven't started the Doxil- getting radiation currently.
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Hi Nkb,
Other than some nausea for a few days after infusion, I’m feeling pretty great. Fatigue is an ongoing issue but it is with any treatment I’m on, so trying to increase the exercise which often helps. So nervous what the PET scan will show this Thursday, hoping Doxil is still working!
Thanks for checking in on me and hope your radiation is going well.
P
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Fingers crossed for your scan!
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Pboi- how did your scan go? I am hoping that it is good news.
thanks for the reassurance that you mostly feel good on the Doxil.
I have not started it yet, as I had a lot of trips planned (silly me) and my MO said it was ok to wait until after I got back.
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Hi Nkb,
Thanks for checking in here. I am so thankful that the PET scan overall was good. No new lesions in my liver and existing liver lesions are a bit smaller. I have a number of bone mets and most of them either stayed the same or got a bit smaller, but unfortunately I have two new small lesions in my bone. So considering my liver is doing well and I have no pain from the bone mets we will continue on and wait and watch.
How great that you are planning trips and a good idea to do it before you start. On any new treatment change,I find it takes a month or two to get adjusted to the side effects.
And as soon as I realized I’d be staying on Doxil for the next few months, I planned a trip too : )
Let me know when you get started on Doxil.
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Hello fellow Warriors! I’m looking for the good, the bad, and the ugly regarding Doxil. I’ve been on Taxotere/Cytoxan, Xeloda, Gemzar/Carbo, and Enhertu. I’ll be starting Doxil next week and I really need this one to work (fingers crossed). This will be my fourth line of treatment since the start of 2022. Boy, 2022 has really sucked! I’d greatly appreciate any words of wisdom you have regarding Doxil.
Thank you! Kc
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kc54321
This is my first post. I wanted to tell you what I've experienced on Doxil so far. I've just completed my 5th cycle last week. I have it once a month. The first two cycles I had no noticeable side effects. Then came cycle 3! H & F syndrome but only on my feet! I got some blisters around my big toes and lots of redness, burning, and itching.I pretty much was wearing the wrong shoes and was on my feet way too much after chemo. Since learning that I should wear slip on shoes that don't rub or cause friction and to stay off my feet the first week after getting treatment I haven't had any trouble. I have had issues with both big toenails lifting and becoming dark around the cuticle but haven't lost any yet! I have a mild headache after chemo for a couple of days but I think it's steroid they give during treatment. Nausea hits me around day 4 and continues on and off throughout the month. My appetite isn't good for the first couple of weeks. Fatigue also comes and goes but nothing too bad. I lay down in the afternoon maybe once or twice during the first couple of weeks after the infusion. I've had some minor mouth sores and gum irritation. I've noticed some dry skin but I just make sure to moisturize well after showering. Hope this helps and I hope your side effects will be minimal!
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Hello meandthebeach! Thank you so much for posting your experience with Doxil. I had Hand/Foot syndrome when I was on Xeloda so I feel like I know that drill. I got my first infusion a few days ago and so far things are going smoothly. I’ll make sure to plan for increased side effects around infusion 3-4. Let’s hope we both get a lot of time on this line!
Take care of yourself! - Kc54321
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just finished reading this thread. I find out next week if Doxil will be my next treatment. Xeloda failed me so moving on.
Thread seems much slower than most. Hope that means that getting one IV session a month is tolerable so fewer comments here.
I will have a MUGA scan prior to first infusion. Not yet scheduled
Hello to those who are actively posting here. Appreciate the sharing of info
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Hi Dodgersgirl!
I never started the Doxil - got stabilized with rads and remained on Xeloda until last month- at that time Enhertu was approved for Her2 low and I started that a few weeks ago.
I got a lot of good info from Pboi- although I think she has now moved on.
I got a MUGA scan for the enhertu- they draw your blood, mix it with the tracer for 30 minutes and re-inject it- you lie on a table and they take a picture of your left ventricular ejection fraction- results were ready right away for me- Pboi got a cardioprotectant drug at some point.
Hope you hear from others-
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nkb— hello!
I had asked to try Enhertu before Doxil. I am HER2 low. Talked to my onc team. Wasn't sure they understood that the drug had been approved but also didn't know if insurance would cover it but I kept asking them to investigate
Turns out they were listening to me! But for me, Enhertu is a no go due to the black box warning not to give to someone who has had pneumonitis (which I got from Afinitor). Onc will NOT consider this med. so it looks the Doxil it will be providing heart does ok.
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Dogersgirl- I think that the current attitude re pneumonitis for Enhertu is quite strict - may loosen up when they get more data. I wonder about Todelvy? I really like the idea of targeted treatment and a decent efficacy, don't know much about the drug and pneumonitis - I know it has been seen with Todelvy- but, not as frequent or severe- there is much more data out about this drug- but, not a waterfall curve.
At least Doxil is once monthly, supposedly not too hard on the hair? I don't know re the efficacy numbers- but, so much is a crapshoot with that.
Lots of new drugs in the pipeline and they can have all sorts of targets for the monoclonal antibodies and many different chemo payloads- some may be much less toxic- we all need to stay alive long enough so when they are available we can have them.
No trials for bone only mets- and no data for us to go by, although it does seem like if anything the efficacy has been better with bone only.
I wish you the best with this choice!
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nkb—- Thanks
I am making a list of alternative treatments but for now what to do something to bat down progression.
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passed the MUGA Scan. Will start IV Doxil next week.
Fingers crossed for good results
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Can’t post too much. Chemo is kicking my arse
Last week was Cycle 1 Doxil.
4 days of Compazine and Zofran every 4 hours (alternatively)
Now it’s messing with Blood Sugar and BM
Can’t get up off the toilet on my own. No leg strength. SUCKS.
See a doctor midweek.
Hope Cycle 2 is more tolerable
IV chemo for Stage 3 was way easier and it was more often.
Scary stuff.
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