Topic: can we start a group for people on doxil?

Forum: Stage IV/Metastatic Breast Cancer ONLY — Please respect that this forum is for members with stage IV/metastatic breast cancer ONLY. There is a separate forum for caregivers and friends: Caring for Someone with Stage IV or Mets.

Posted on: Oct 22, 2013 11:58AM

Posted on: Oct 22, 2013 11:58AM

bhd1 wrote:

hello. I am moving on from pht to doxil, Herceptin, perjeta. I am interested in learning all I can about doxil and was hoping there are others out there on this drug to share experience with. thanks. barb

barb Dx 9/22/2011, IDC, 3cm, Stage IV, Grade 3, ER-/PR-, HER2+
Log in to post a reply

Page 12 of 23 (224 results)

Log in to post a reply

May 6, 2014 01:08PM - edited May 6, 2014 01:11PM by Annie62

Karen - sorry to hear you were feeling so bad, but good news about the rehydration. I really need to drink more fluids. I've been slacking off on that. I think I'll pour myself a tall glass of water right now.

Barb- Good luck with your scan on Monday. I'll post my results as soon as I get them. Fingers and toes crossed for a good one.

Annie

ETA: I also wanted to mention that my hair is growing back. Yippee! Hopefully I'll have my whole head covered (if not very long) by late June when I go on vacation to Puerto Rico. 

Stage IV 8/2012 Liver, brain, bone, mets. Halaven Past chemos:Carboplatin/VP16, Xgeva, Doxil, Gemzar, Navelbine, Xeloda, Faslodex Orig Dx 11/2004 St. IIIc IDC 11/19 nodes AC,Taxotere. Tamox, Aromasin. 2010 Abraxane and Gemzar, ER+/PR+ Her2- BRCA-
Log in to post a reply

May 10, 2014 10:19AM jeanieb2 wrote:

Hello to all of you.  I am new to Doxil, not new to chemo but new to this treatment.  I was wondering if anyone can tell me what to expect for side effects.  I do know we are all different as far as that goes, but it is nice to hear what other people are reporting, that way I can say oh it is just the chemo and not something else.  I started on it Thursday, May 8, after trying Afinitor/Aromasin, I had some issues with that so we moved on.  Before that treatment I was doing Taxotere and Xeloda, but had to move on as it had stopped working for me.  Any suggestions or comments on this drug would be greatly appreciated.  I do have the info that the oncologist gave me but would like to hear from people actually taking this drug.  The way the doctor and nurses talked, it is a fairly easy chemo to tolerate.

jeanieb Dx 10/27/1992, ILC, 3/14 nodes, ER+, HER2- Surgery 10/29/1992 Lymph node removal: Right; Mastectomy: Left, Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Chemotherapy 11/9/1992 CMF Dx 6/2/2009, Stage IV, 2/17 nodes, ER+/PR-, HER2- Hormonal Therapy 6/15/2009 Femara (letrozole) Dx 6/2/2011, ILC, Stage IV, mets, ER+, HER2- Hormonal Therapy 6/3/2011 Aromasin (exemestane) Radiation Therapy 8/9/2011 Bone Chemotherapy 9/4/2011 Xeloda (capecitabine) Dx 9/9/2011, ILC, Stage IV, ER+, HER2- Radiation Therapy 1/16/2012 Bone Dx 9/6/2012, Stage IV, ER+ Chemotherapy 9/6/2012 Taxotere (docetaxel), Xeloda (capecitabine) Chemotherapy 4/4/2013 Taxotere (docetaxel), Xeloda (capecitabine) Chemotherapy 11/14/2013 Taxotere (docetaxel), Xeloda (capecitabine) Hormonal Therapy 3/6/2014 Aromasin (exemestane) Targeted Therapy 3/6/2014 Afinitor (everolimus) Chemotherapy 5/8/2014 Doxil (liposomal doxorubicin)
Log in to post a reply

May 10, 2014 03:56PM bhd1 wrote:

The only negative side effect for me is hand/ foot syndrome.  Mo spaced my tx to every six weeks.  I have scans monday

barb Dx 9/22/2011, IDC, 3cm, Stage IV, Grade 3, ER-/PR-, HER2+
Log in to post a reply

May 13, 2014 03:28PM bhd1 wrote:

well I am off doxil due to progression.

barb Dx 9/22/2011, IDC, 3cm, Stage IV, Grade 3, ER-/PR-, HER2+
Log in to post a reply

May 14, 2014 08:23AM Annie62 wrote:

BHD1- Ugh. I am so sorry to hear this. I know how hard it is to hear that you are on to the next arrow in the quiver. I guess I'll take  up the torch from you on this thread so newcomers can find it. Thanks for starting it.

Thankfully Doxil is working for me right now. I got my first scan that showed regression in the liver. It's been 20 months and the lesions were getting to be of concerning size so I'm very relieved.  I don't have details yet, (need to get my hands on the report).  

Jeannie - the only side effect I've had was a really really bad rash one month. It was mostly on my legs, a bit on my arms and torso. My hands and feet have been good so far. Otherwise I find it has been easy to tolerate and I love that I only have to go once per month for chemo. I think my onc was originally reluctant to use it since she didn't have tons of experience with it but maybe now having me as a lab rat :), she'll be more open to using it. I wonder if other oncs are the same since there don't seem to be a ton of us on it here.

Annie

Stage IV 8/2012 Liver, brain, bone, mets. Halaven Past chemos:Carboplatin/VP16, Xgeva, Doxil, Gemzar, Navelbine, Xeloda, Faslodex Orig Dx 11/2004 St. IIIc IDC 11/19 nodes AC,Taxotere. Tamox, Aromasin. 2010 Abraxane and Gemzar, ER+/PR+ Her2- BRCA-
Log in to post a reply

May 14, 2014 11:10AM jeanieb2 wrote:

Annie62 - I wonder the same thing about the use of it.  I thought there would be more on this, but as I recall on Taxotere there were not that many either.  I have found this much, much easier than the Taxotere, other than the nausea, taking Zofran for that but it does not help all the time, some constipation, which can be taken care of also.  I have only had one treatment, which was last Thursday so I do not know what to expect yet.  I have had hand and foot syndrome with Xeloda and Taxotere so will know what to look for there.  The nurse at the onco office put ice on the bottom of my feet and I had to keep my hands on ice during the administering of Doxil, I do not know if it helps but she said it does help with the hand and foot.  I was just wondering if side effects got worse as time went on or if they get better.  Thanks for the info.  I do find this one so much easier than Taxotere, hope it continues that way.

jeanieb Dx 10/27/1992, ILC, 3/14 nodes, ER+, HER2- Surgery 10/29/1992 Lymph node removal: Right; Mastectomy: Left, Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Chemotherapy 11/9/1992 CMF Dx 6/2/2009, Stage IV, 2/17 nodes, ER+/PR-, HER2- Hormonal Therapy 6/15/2009 Femara (letrozole) Dx 6/2/2011, ILC, Stage IV, mets, ER+, HER2- Hormonal Therapy 6/3/2011 Aromasin (exemestane) Radiation Therapy 8/9/2011 Bone Chemotherapy 9/4/2011 Xeloda (capecitabine) Dx 9/9/2011, ILC, Stage IV, ER+, HER2- Radiation Therapy 1/16/2012 Bone Dx 9/6/2012, Stage IV, ER+ Chemotherapy 9/6/2012 Taxotere (docetaxel), Xeloda (capecitabine) Chemotherapy 4/4/2013 Taxotere (docetaxel), Xeloda (capecitabine) Chemotherapy 11/14/2013 Taxotere (docetaxel), Xeloda (capecitabine) Hormonal Therapy 3/6/2014 Aromasin (exemestane) Targeted Therapy 3/6/2014 Afinitor (everolimus) Chemotherapy 5/8/2014 Doxil (liposomal doxorubicin)
Log in to post a reply

May 14, 2014 01:10PM Annie62 wrote:

Jeannie - I also did taxotere (long time ago) because I had an allergic reaction to Taxol. Doxil is a lot easier than that as far as I'm concerned. As for SEs being cumulative or not, I only got a rash after my second infusion and I've had 3 now. I'm careful about my hands and feet but so far so good on that. I have had any nausea since the Abraxane was dropped (I had that the first month I got Doxil). I get sleepy from the Benadryl they give me at infusion but that night or the next day I'm usually wired from the steriods and get tons done. Then I take it easier for a day or two. I hope it keeps up and keeps working. This has been pretty easy on me and is the first one to work on my liver mets.

Annie

Stage IV 8/2012 Liver, brain, bone, mets. Halaven Past chemos:Carboplatin/VP16, Xgeva, Doxil, Gemzar, Navelbine, Xeloda, Faslodex Orig Dx 11/2004 St. IIIc IDC 11/19 nodes AC,Taxotere. Tamox, Aromasin. 2010 Abraxane and Gemzar, ER+/PR+ Her2- BRCA-
Log in to post a reply

May 14, 2014 02:48PM jeanieb2 wrote:

Annie62 - I am so glad to hear this one has been easier on you and that it is working, that is what I like to hear.  I took Taxotere for about a year and a half before it stopped working, he would have kept me on it but it put me out of commission for about 11 of the 21 days and he said he wanted me to have a quality of life, if it had not bothered me he would have used it as a maintenance chemo, it was keeping it from spreading but not shrinking any of it so that is when he switched to Aromasin and Afinitor but I had a reaction to that so we had to move on.  I am hoping that the Zofran taken on a regular basis will help with the nausea, I sometimes forget to take it and end up only taking it 1 or 2 times a day instead of every 6 hours like I should.  I am hoping to miss out on the hand and foot syndrome but I had that issue with Xeloda and with Taxotere so figure I will have it but so far it is OK.  I hope you can continue to take this for a long time and that it works on your liver mets.  I have it in the lining of my lungs, ovary, bones, skull, omentum and other various places in the abdomen area, I do not think my liver is affected, at least he has not said anything about it or I have forgotten.  I just want something to keep it stable, that is my goal, of course we would all like to meet NED but I know in my case that is never going to happen unless they come up with a drug that would do that, I am just happy to keep it from spreading anywhere else, and if it does, so be it, I will just be on something the rest of my life and that is OK, as long as there are new drugs coming out that we can try.  Take care and thanks for your response, I really do appreciate it.  Sometimes I just feel like I am going through this by myself, I have lots of support from family and friends but there is no one to talk to about the drug itself and the side effects, other than the nurses and doctor, but they have not actually used it, they can only tell you what other patients have said or done.

jeanieb Dx 10/27/1992, ILC, 3/14 nodes, ER+, HER2- Surgery 10/29/1992 Lymph node removal: Right; Mastectomy: Left, Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Chemotherapy 11/9/1992 CMF Dx 6/2/2009, Stage IV, 2/17 nodes, ER+/PR-, HER2- Hormonal Therapy 6/15/2009 Femara (letrozole) Dx 6/2/2011, ILC, Stage IV, mets, ER+, HER2- Hormonal Therapy 6/3/2011 Aromasin (exemestane) Radiation Therapy 8/9/2011 Bone Chemotherapy 9/4/2011 Xeloda (capecitabine) Dx 9/9/2011, ILC, Stage IV, ER+, HER2- Radiation Therapy 1/16/2012 Bone Dx 9/6/2012, Stage IV, ER+ Chemotherapy 9/6/2012 Taxotere (docetaxel), Xeloda (capecitabine) Chemotherapy 4/4/2013 Taxotere (docetaxel), Xeloda (capecitabine) Chemotherapy 11/14/2013 Taxotere (docetaxel), Xeloda (capecitabine) Hormonal Therapy 3/6/2014 Aromasin (exemestane) Targeted Therapy 3/6/2014 Afinitor (everolimus) Chemotherapy 5/8/2014 Doxil (liposomal doxorubicin)
Log in to post a reply

May 27, 2014 12:09PM TLEB wrote:

Hello Everyone,

I am so very happy to find this thread! I am thankful that I can now share my challenges and victories with those who are going through the same journey as I am. To be able to give and get advice is a truly a blessing! My name is Elaine. And my story began when  I was diagnosed with breast cancer in November 2002 at age 34( with a 3 yr old daughter and a 1 yr old son). On, Jan 10, 2003,3 days after my 35th birthday and had a double mastectomy with reconstruction with tram flap . My recurrence came 3 years later in 2006 in a few of my vertebrae. Unfortunately, I have recently been diagnosed with mets to the liver, a few centimeters. Nonetheless it is there. I have been on several different types of tx over the years. I was previously on abraxane and it kept me stable but caused major neuropathy. Currently, I am on doxil (my first treatment was at the beginning of this month) along with oral drugs affinitor/aromastane. So far, I have been handling the SE pretty well. However, the most recent occurrence have been pimple like blisters around my mouth. Has anyone experienced this? Any advice/solutions? Thanks!

Log in to post a reply

May 28, 2014 07:32PM jeanieb2 wrote:

I was wondering if the second and third treatments of Doxil gets any easier.  I have to say I thought it was a piece of cake, compared to the other one I took and for the most part it has been.  I go for my second treatment on June 5 so I thought this week and next week would be normal.  I am still having quite a bit of fatigue, off and on nausea, sort of listless.  I just wondered if anyone adjusted to it and it gets easier or if it gets a little worse after it starts to accumulate in your system.  I also wondered how soon some of you had results with it, the first, second, third time or what, I also realize we are all different but was curious to what the average was.

jeanieb Dx 10/27/1992, ILC, 3/14 nodes, ER+, HER2- Surgery 10/29/1992 Lymph node removal: Right; Mastectomy: Left, Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Chemotherapy 11/9/1992 CMF Dx 6/2/2009, Stage IV, 2/17 nodes, ER+/PR-, HER2- Hormonal Therapy 6/15/2009 Femara (letrozole) Dx 6/2/2011, ILC, Stage IV, mets, ER+, HER2- Hormonal Therapy 6/3/2011 Aromasin (exemestane) Radiation Therapy 8/9/2011 Bone Chemotherapy 9/4/2011 Xeloda (capecitabine) Dx 9/9/2011, ILC, Stage IV, ER+, HER2- Radiation Therapy 1/16/2012 Bone Dx 9/6/2012, Stage IV, ER+ Chemotherapy 9/6/2012 Taxotere (docetaxel), Xeloda (capecitabine) Chemotherapy 4/4/2013 Taxotere (docetaxel), Xeloda (capecitabine) Chemotherapy 11/14/2013 Taxotere (docetaxel), Xeloda (capecitabine) Hormonal Therapy 3/6/2014 Aromasin (exemestane) Targeted Therapy 3/6/2014 Afinitor (everolimus) Chemotherapy 5/8/2014 Doxil (liposomal doxorubicin)

Page 12 of 23 (224 results)

Scroll to top button