All About Doxil
Comments
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Dee, that is wonderful news! I am glad you are sticking with it and got the dose reduction too. Good luck with the Y-90 for your liver mets. I hope Doxil does for you what it has done for me. Happy New Year!
Cindy
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Hi everyone,
I thought I'd join in the discussion since I just recently started Doxil. I am 9 days since my first infusion. It seems like I have tried everything under the sun, most recently Halaven. Halaven was a breeze compared to this but unfortunately it stopped working so my onc switched me to Doxil. I'm now 9 days since treatment and I still feel like crap although I did wake up today feeling a bit better than I did yesterday. I've made it through lunch today and haven't had to take a Zofran! (knock on wood!) An interesting SE was a couple of days after infusion I was getting terrible muscle pains in the chest area/ribs. I should also note that my disease is in the sternum with a few tiny nodules in my lung. Thankfully, those pains have subsided. I'm not looking forward to possible future SE's that have not reared their ugly heads yet! My hair grew back while on Halaven and I now have a head full of chemo curls. I used to complain about the curls and now I hope they don't leave me. I'm waiting to see whether they decide to fall out or not.
It's so hard trying to keep a positive attitude with all of this but yet we have no choice. I'm sorry we are all here. I do have to say that it's a comfort to return to these boards and feel the support. It stinks big time but helps sharing. XOXO
I will be back with status updates on my journey with this Doxil and to support you all. Thanks! Elaine
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Hi Elaine - Welcome to the Doxil thread! I think most of us have gone through many types of treatment. This time around I've been on Ibrance/Letrozole/Faslodex, Affinitor/Exemestane (Ugh!), Xeloda, and now Doxil. I know when my MO suggested an infusion chemo I was very distraught. But, I only have it once a month and my tumor markers have gone from over 200 to 35 and my last scans were "stable, no new disease" for the first time since 2016! When I first started Doxil I had some mild nausea but it went away after a couple of treatments. I have Hand & Foot from being on Xeloda and it's continued on Doxil but is manageable. Other than being fatigued because I am anemic (and getting an Aranesp injection when my hemoglobin goes below 10.0), the only other SEs I have are incessantly runny nose and eyes, which is really annoying, and a back pain I have that is not associated with the bone mets I have! I will say my hair has thinned out from what it was at the beginning of Doxil but I can deal with that. It does become trying at times and some days are more difficult in trying to keep up a positive attitude. But, we all have to keep keeping on!
Please keep us updated on your Doxil progress!
Cindy (Elaine is my middle name!)
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Hi Cindy, thanks for the welcome! I have had the runny nose thing for about a year now. It started last year and I attributed it to allergies but now I'm wondering. I can't do anything unless I have a tissue in my pocket. I agree, it's very annoying!
I have been having back pain the last several days along with neck, shoulder, and headaches. I took today off from work because I'm getting easily fatigued and just feeling overall crummy. I suspect my RBC is dropping. I didn't have any problems with blood counts while on Halaven but Doxil is a different ball game. I see my onc tomorrow and will have labs done. When I was first doing my research about Doxil SE's I read how some people said they really kicked in around the 2nd week. I thought surely that cannot be true! However, I'm at day 12 and hoping for better days soon!
I hope everyone has a good week!
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Just stopping in to say that I am already off Doxil, having had two monthly infusions. One particular liver bugger doesn’t seem to care about Xeloda, Halaven, or Doxil. So we are going to bomb it with Y90 (radioembolization) local treatment, then start me on neratinib for a Her2 mutation, along with some other drug yet to be determined. I would have been glad to stay on Doxil as the side effects were mild and I had many good days. Best of luck to all!
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Shetland,
Sorry to hear you are leaving us but I hope the Y90 works for you. I have had such good luck with Doxil, TMs down another 4 points to 31 this month, but we each are so different in how we/our cancers react to each treatment.
Good luck and let us know how it works out!
Cindy
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Hi Lainey,
I have had the runny nose thing since I started on Ibrance back in 2016. My MO says it's the disease but I know I also have some allergies to go along with it. It's particularly annyoing when it's windy or cold. I live in the Las Vegas valley and it is so dry here all year long you would think it wouldn't be possible to have a runny nose but it is! I take Claritin only because it does help with the SEs from Zometa, which I get along with my Doxil infusion. I've tried all the sinus OTC medicines and they are all about the same, they help a little with drying my nose up but do almost nothing for my runny eyes. Oh well, I'll take the runny nose/eyes thing for TMs of 31! As for the back pain, I am waiting on a referral from my MO to an orthopedist in town as Aetna told me they didn't have ONE orthopedist on their preferred provider list in Clark or Nye county (their service area). I was dumbfounded when she said that. How can you not have any in-network orthos as preferred providers?? Also, as regards RBC, my hemo went down to 5 this last July, normal is 11.0 - 13.0. I had to go to the ER and have a blood transfusion. That was a Tuesday and the Sunday before I had passed out in my kitchen getting something out of a cupboard I had to look upwards for. That sure was a surprise! When my MO saw the blood test results that Tuesday, she freaked out! Good thing I had my friend drive me down there (about 25 miles) as I wouldn't have made it myself. I have been having my blood drawn once every two weeks, and when it falls below 10.0, I get an Aranesp injection. That has helped and my Hemo hovers around 9.6 to 10.0. Rarely, even with the Aranesp does it go over 10.0. So just be aware that your Hemo count can decline rather quickly. I should have called my MO before I did and that was my "oh, I can handle this" attitude getting in my own way!
Good luck with your treatments and I hope Doxil does as well for you as it has for me.
Cindy
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I am on a cousin of Doxil - epirubicin (same lovely color)- which is working after a really scary few weeks in which I couldn't keep any food down in November. It does have a strong kick to it - on days 2-5 I don't want to move at all, or eat much, but once that passes, I feel almost normal. I am almost bald, and lost my eyelashes, and also have the perpetually runny nose. (Never occurred to me that it was related to treatment until I read this thread!) But it's working, so I'll take it all.
I had one dose of Doxil last spring which exhausted me for a week. Long naps every day. And I had 3 doses of liposomal doxirubicin before that which gave me a horrible rash on my legs and feet - burning welts which took weeks to go away.
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Welcome wmukluk! Sorry you seem to be having such a tough time with the rubicin family! I see you have been through the gauntlet with the various treatments. Fortunately, for me, Doxil proved to be the thing that has, so far, really kept the lid on my disease. I tolerate it fairly well as far as SEs are concerned. Still slightly anemic and have hand and foot but nothing that I can't handle. I have read of others who have had skin SEs. My hair has thinned but I still have it and have not noticed much change in eyelashes. I'd have to say having the constant runny nose/dripping eyes and the tiredness are what bothers me most at this point. I got the H&F from the Xeloda so that's been around so long now, I just deal with it. I hope you continue to have good results with your treatment.
Cindy
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Hi Cindy, I'm stopping by to catch up with those on Doxil. Do you remember I switched from Doxil to Taxol last fall. I'm one of those that just couldn't tolerate Doxil. I wish I could have stuck with it. I've had 20 infusions of Taxol and to date a 30% reduction in lung nodules. New scan and results on Feb 6. M0 is planning to reduce dosage by 20% next infusion. I have neuropathy which has been getting a little worse over time. I'm wishing you continued success in this battle and look forward to reading more posts. Thinking of you. Nancy
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Nancy, it's so good to hear from you! I'm glad that the Taxol is working for you. I've had my Doxil dosage reduced also and it still seems to be working. Will find out on February 4th. when I see my MO again. I've had neuropathy since the first time around in 2006 but it's an old friend by now! I do think the H&F seems to make it a little worse.
Please let me know what your new scan results are. Wishing you the best!
Cindy
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getting my 3rd and last doxil while I wait to see if I qualify for a clinical trial for ESR1 mutation. https://clinicaltrials.gov/ct2/show/NCT03781063
If I don’t make the cut, I will probably go on afinitor plus falzodex or taxol
doxil allowed multiple new mini tumors in the liver and suspect ones in my lung. 😔 it has been hard with awful hand and foot plus stomach issues so I won’t miss it. 3rd line of therapy in 9 months
Blessings to all
Dee
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Dee, Sorry to hear that Doxil didn't work for you. Hopefully you are qualified for the clinical trial. The majority of us have been through multiple treatments, you just have to hit on the one that suits your cancer type and body.
Good luck and please let us know how you're doing and whether you got into the clinical trial.
Cindy
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Hi Cindy, My recent scan showed that my cancer was not growing at this time. MO has reduced my taxol from 3X a month to 2X just to keep me hopefully stable. I hope my neuropathy improves on this new regimen. Good luck to all who are in treatment. Tip-I found that those little hot hand pads slipped between socks helps my cold.prickly feet. I’m happy to report that my hair is growing back. The color is true to what I had before. I spray daily with water and rosemary oil combo. It work for me once when I had thinning. I don’t know why it works but it does . its supposed to wake up the roots. Thinking of you all, Nancy0
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Wallaby 715 and all
Thanks for the support and good advice. Done with doxil- it did not work good enough to continue on it, no to clinical trial because I had 2 chemos.
but onto a new plan that gives me renewed hope. afinitor/faslodex/octreotide. They are finally addressing the Neuroendocrine features of my cancer.
Best wishes to all and may doxil kill your tumors!
Dee
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Hi all, looks like I'll be joining you, after a fashion. For a multitude of reasons I decided on Adriamycin rather than Doxil but it's more or less the same drug.
I'll get it every week. No idea what the pre-meds etc. are. Will find out in about 45 minutes, LOL.
Here they give Doxil every 4 weeks. My cancer has been growing a lot lately so neither I nor my MO want to wait four weeks to find out whether this is going to work.
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Nancy, glad to hear your hair is growing back and the good scan! My feet are not as bad as my hands but even though I wear shoes all day, when I go to bed my feet are ice cold. They do warm up during the night and then they get burning hot so I have to stick my feet out of the covers! Strange SEs! Wishing you good luck with your next treatment, saying prayers for us all!
Cindy
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Dee, good luck with the Affinitor/Faslodex/octreotide treatment. I'm not familiar with the last drug, octreotide. Sorry to hear you did not qualify for the clinical trial. I don't have any genes or anything else that qualifies me for any clinical trials or any other type of non-standard treatment regimen. I told my MO that I have plain, 'ole, white bread cancer! Oh well, at the moment Doxil is kicking it to the curb. I hope Affinitor etc. does the same for you. Please let us know how you're doing on it!
Cindy
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HI pajim! Yes, I have Doxil once every month, which I'm thankful for! So far, it's done it's job on my cancer as my tumor markers are now down to 30, which is in the normal range. I had Adriamycin on my first go-around in 2006. It got rid of it then but it was a rough treatment regimen. I hope you have minimal side effects and good results! Please keep us advised of how you're doing with it.
Cindy
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Well, I'm almost at the end of the first week. Days 1 & 2 were easy. Thank you steroids. Day 3 (saturday) was iffy. Day 4 I had the sleepies. Seriously. I could not stay awake. Is there any remedy for this?
Today I woke up feeling better. I sleep badly because I can't lie on my sides. But at least I was awake all day! And I managed to do my rehab exercises.
Tomorrow should be even better then on Wednesday they hit me again.
I also have a cold and random muscle/bone pains. It's hard to know what is the cancer, what's the treatment, what's the rehab, and what's the cold. So far I'm just sucking it up. Waiting for the TMs on Wednesday.
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pajim - hello, I don’t know if you remember me from the Halaven thread. I’m only on the threads periodically these days. But I’m glad to see you still have your amazing strength. I must use you as an inspiration during my difficult times, I like the term you used “sucking it up”...yes that is what I need to do. I am also on weekly Doxil, my sleep day is usually the evening of treatment or the next day. Then I start feeling better, I am on cycle 3 and Thursday will be day 8.
Wishing you and everyone an amazing night.
Maureen
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I'm joining this group starting with my first weekly infusion of doxorubicin. I seem to get pretty bad side effects from almost everything so my MO has decided that maybe weekly will work better for me. She says there are usually very few SE's on weekly. Fingers crossed for this & blasting these liver tumours good bye. I've read quite a few pages of this thread & thank you all for your personal insights.
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Hi...this is my first time here...so I am hoping some can help me.
I may be going to either Paxitel > spelling or Doxil next...my MO is letting me decide. I have never had any IV chemo.
What I would like to know is who can tell me if they got NED on Doxil..
I am mainly looking for people that are ER+ PR- HER2 - ONLY....well specifically HER2 - (please don't reply if you are HER2+ and taking herceptin)
What GRADE is your BC?
Where are your METS?
How long did it take to get NED?
Was this your 1st, 2nd, 3rd etc line of treatment, what other treatment have you had?
Do you get the Doxil once a month?
Also I just heard that Doxil can only be taken for 2 years max (if it even works) because it can cause heart issues???
Thank you ladies...
Nicole
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GG27: Welcome! I did not know they gave Doxil in weekly infusions. I'm fairly far down the line wiith my Doxil infusions so the SEs are pretty stable now. I also have liver tumors and they have shrunk since I was first diagnosed with Stage IV in 2016. I do have Hand and Foot syndrome and that gets a little old after awhile but not anything I can't handle. My biggest complaint on any of the treatments, some more than others, is it knocks my hemglobin down, thus my energy level goes in the cellar. Last July I had to have two units of blood it got so low. I'm now getting Aranesp when it goes below 10.0 and that has helped keep it more stable but nothing like after I had the two units of blood. I actually felt like my old self after that.
All in all, I find Doxil very tolerable and my last set of scans was deemed "stable", no new disease present, and my tumor markers are at 30. Let us know how you are doing!
Cindy
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Nicole,
I don't know anyone on this thread at this time that has been declared NED. As for myself, I am ER+, HER2-, waffle back and forth on the PR+/-, according to my MO. I would have to dig back into my records from my original diagnosis in October of 2006 to find a "grade" deliniation. I was diagnosed in 2006 with Stage 3C and had adriamycin/cytoxan, paclitaxel, and 33 days of rads. Diagnosed in March, 2016 with Stage IV metastatic. My last set of scans showed "No new disease, stable" but no "NED" statement.
As for your other questions, I'll try to answer them below, as pertains to myself:
What GRADE is your BC? As stated above, it's been too many years and my current MO and I have not had any discussion of "grade".
Where are your METS? My mets are lung (1 tumor, rt lung), liver (2 tumors), numerous and sundry bone mets (spine, skull, femur, humerus)
How long did it take to get NED? Not NED but my last set of scans were "stable" and my tumor markers are now down to 30, which is within normal range.
Was this your 1st, 2nd, 3rd etc line of treatment, what other treatment have you had? For this diagnosis, I am on my 5th line of treatment:
Ibrance/Letrozole: March, 2016 - October, 2017.
Ibrance/Faslodex: October - March 2018.
Affinitor: March 2018 - August 2018
Xeloda: September 2018 - April 2019
Doxil: April 2019 - Present
Also I just heard that Doxil can only be taken for 2 years max (if it even works) because it can cause heart issues???
I asked my MO last month about this issue. Her answer was that I have an echocardiogram once every 3 months and as long as the results from that are satisfactory, she will continue me on the Doxil.
You indicated that you have never had any IV chemo before. I surely hope your MO has scheduled you to get a port. I can't imagine having weekly chemo treatments without one.
Hopefully this information has been helpful to you. Good luck!
Cindy
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Wallaby thank you so much for your reply.. If I get doxil it will be once a month so I do not want a port right now. If I do Nabpacitaxol I think we may do a port....
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Hi Doxil sisters!
hooked up to my first treatment. So far so good, my throat feels a little tight and my cheeks feel some pins and needles but otherwise OK. I seem to be on a 3 week regimen, likely so that they can do the Herceptin at the same time.
Nicole, if you don't have a port yet, are you using a PICC line? I highly recommend the port, though I was hesitant at first. The port is dicreet and makes all the procedures so much easier. Also you can swim!
Big hello from Sweden where we call Doxil "Caelyx". Fingers crossed!
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Hello Wallaby715, thanks for your information and that's very helpful. May I ask what adviced you got from you MO for hand foot syndrome? and how did you handle that?
Good luck and Fingers crossed!
Angelique
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Welcome Arolsson! I hope your treatment went well and you are not suffering bad SEs. Info I found on this site regarding Doxil SEs said to use ice chips and just swish them around in your mouth while you are getting your infusion. Supposedly helps with mouth sores and maybe it would help with your tingling sensation. That's not something I had and the ice didn't seem to stave off mouth sores, which I am well acquainted with! This last month is the first time I have not had mouth sores after my treatment.
Good luck and please let us know how you are doing!
Cindy
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AngeliqueZ: My MO didn't really have a lot to say about hand and foot. I first developed it when I went on Xeloda and it's continued on Doxil. It is tolerable as long as I keep some kind of lotion on my hands. My feet are not as bad. I actually got 99% of my information about H&F from this website. If you go on the Xeloda thread, there are lots of ladies there who have some very good advice regarding H&F, as most of them on Xeloda have it.
I have more trouble with mouth sores after my monthly infusion and this last month is the first month that I did not have any. They are always in the same spot and very painful. I'm hoping that I don't have any from the next treatment, which is this coming Wednesday. Good luck with your treatments!
Cindy
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