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 10:58AM

Posted on: Oct 22, 2013 10:58AM

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+
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Jul 7, 2014 10:00AM jeanieb2 wrote:

Annie62 - I hope you got some much needed sleep.  I posted that about not sleeping and of course this time after treatment on Saturday and Sunday I was so tired I laid down and slept off and on for about 4 hours each day and still slept at night.  Maybe it is accumulating in my system I don't know.  I noticed that between my fingers they are very red and sore, kind of like the hand and foot syndrome you get but nothing on the hands and feet, so I may have to call the doctor and get something if it gets any worse, I do not want it to crack but can not figure out why it is that way.  Have you had any trouble with that?

jeanieb Dx 10/27/1992, ILC, 3/14 nodes, ER+, HER2- Surgery 10/28/1992 Lymph node removal: Right; Mastectomy: Left, Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Chemotherapy 11/8/1992 CMF Dx 6/2/2009, Stage IV, 2/17 nodes, ER+/PR-, HER2- Hormonal Therapy 6/14/2009 Femara (letrozole) Dx 6/2/2011, ILC, Stage IV, mets, ER+, HER2- Hormonal Therapy 6/2/2011 Aromasin (exemestane) Radiation Therapy 8/8/2011 Bone Chemotherapy 9/3/2011 Xeloda (capecitabine) Dx 9/9/2011, ILC, Stage IV, ER+, HER2- Radiation Therapy 1/15/2012 Bone Chemotherapy 9/5/2012 Taxotere (docetaxel), Xeloda (capecitabine) Dx 9/6/2012, Stage IV, ER+ Chemotherapy 4/3/2013 Taxotere (docetaxel), Xeloda (capecitabine) Chemotherapy 11/13/2013 Taxotere (docetaxel), Xeloda (capecitabine) Hormonal Therapy 3/5/2014 Aromasin (exemestane) Targeted Therapy 3/5/2014 Afinitor (everolimus) Chemotherapy 5/7/2014 Doxil (doxorubicin)
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Jul 7, 2014 02:33PM Annie62 wrote:

jeanie - still sleeping  badly. I'm glad you got some good shut-eye!

Re: the hands. Keep them moisturized  so they don't crack and call you doctor. The nurses at my chemo center are firm about calling them if I start to get this. I've been lucky so far. 

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-
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Jul 8, 2014 05:32PM jeanieb2 wrote:

Annie62 - The sleeping thing did not last Sad, I had a terrible night last night, was tired today so laid down but could not go to sleep, hopefully tonight will be better, if not, I guess that is just the way it goes.  I will call my doctor tomorrow or Thursday, he is there on Thursday and would rather the nurses ask him instead of one of his associates so hopefully I can remember to call on Thursday.  Hope you get some much needed rest soon.

jeanieb Dx 10/27/1992, ILC, 3/14 nodes, ER+, HER2- Surgery 10/28/1992 Lymph node removal: Right; Mastectomy: Left, Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Chemotherapy 11/8/1992 CMF Dx 6/2/2009, Stage IV, 2/17 nodes, ER+/PR-, HER2- Hormonal Therapy 6/14/2009 Femara (letrozole) Dx 6/2/2011, ILC, Stage IV, mets, ER+, HER2- Hormonal Therapy 6/2/2011 Aromasin (exemestane) Radiation Therapy 8/8/2011 Bone Chemotherapy 9/3/2011 Xeloda (capecitabine) Dx 9/9/2011, ILC, Stage IV, ER+, HER2- Radiation Therapy 1/15/2012 Bone Chemotherapy 9/5/2012 Taxotere (docetaxel), Xeloda (capecitabine) Dx 9/6/2012, Stage IV, ER+ Chemotherapy 4/3/2013 Taxotere (docetaxel), Xeloda (capecitabine) Chemotherapy 11/13/2013 Taxotere (docetaxel), Xeloda (capecitabine) Hormonal Therapy 3/5/2014 Aromasin (exemestane) Targeted Therapy 3/5/2014 Afinitor (everolimus) Chemotherapy 5/7/2014 Doxil (doxorubicin)
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Jul 8, 2014 06:57PM Annie62 wrote:

Aww Jeannie - sorry you can't sleep. Unbelievable how bad it can make us feel. I finally had a good night last night. Hope for another tonight.

ask your onc for an Rx - if not a sleep aide, maybe a muscle relaxant or anti-anxiety med. I've had both at different times and they helped me sleep. If you don't have any tylenol pm type thing for tonight, how about a swig of Benadryl or NyQuil?

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-
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Jul 9, 2014 11:55AM jeanieb2 wrote:

Annie62 - I have had a prescription for Lunesta but did not like that and sometimes it did not work.  I have tried the Tylenol PM and each time I did I was like a Zombie the next day but I have taken the Benadryl and it seems to work, I had forgotten about that.  I also have a prescription, a low dose, of Xanax which maybe I need to take it every night.  I have noticed the last 3 or 4 nights the bones in my legs just hurt so have taken Tylenol for that, last night I took that and a Xanax and slept pretty good, it could either be that or else I was just so tired from not sleeping the night before.  I may just take the two together for a couple nights and see if it helps and then use the Benadryl sometimes too.  Thanks for reminding me about that.  I swear this chemo brain is not getting any better.  It seems to be getting worse some days.  Have you noticed it or have you been affected by this?

jeanieb Dx 10/27/1992, ILC, 3/14 nodes, ER+, HER2- Surgery 10/28/1992 Lymph node removal: Right; Mastectomy: Left, Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Chemotherapy 11/8/1992 CMF Dx 6/2/2009, Stage IV, 2/17 nodes, ER+/PR-, HER2- Hormonal Therapy 6/14/2009 Femara (letrozole) Dx 6/2/2011, ILC, Stage IV, mets, ER+, HER2- Hormonal Therapy 6/2/2011 Aromasin (exemestane) Radiation Therapy 8/8/2011 Bone Chemotherapy 9/3/2011 Xeloda (capecitabine) Dx 9/9/2011, ILC, Stage IV, ER+, HER2- Radiation Therapy 1/15/2012 Bone Chemotherapy 9/5/2012 Taxotere (docetaxel), Xeloda (capecitabine) Dx 9/6/2012, Stage IV, ER+ Chemotherapy 4/3/2013 Taxotere (docetaxel), Xeloda (capecitabine) Chemotherapy 11/13/2013 Taxotere (docetaxel), Xeloda (capecitabine) Hormonal Therapy 3/5/2014 Aromasin (exemestane) Targeted Therapy 3/5/2014 Afinitor (everolimus) Chemotherapy 5/7/2014 Doxil (doxorubicin)
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Jul 13, 2014 12:22PM 007_Kara wrote:

Starting my 4th round and I get it once a month. I am getting this red rash on my back and chest. It hits me on the 3rd week.

Kinda feels like small blisters. - Benedryl not helping. Any ideas?

And the raw mouth feeling and teeth ache too.

Dx 11/7/2011, IDC, 4cm, Stage IV, Grade 2, 2/25 nodes, mets, ER+/PR+, HER2- Radiation Therapy 12/2/2011 Chemotherapy 12/22/2011 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Hormonal Therapy 3/15/2012 Surgery 6/4/2012 Lumpectomy: Right; Lymph node removal: Right, Underarm/Axillary Surgery 6/20/2012 Lumpectomy: Right Radiation Therapy 7/15/2012 Breast, Lymph nodes Chemotherapy 11/28/2012 Halaven (eribulin) Radiation Therapy 1/9/2013 Brain Chemotherapy 4/24/2013 Halaven (eribulin) Hormonal Therapy 9/4/2013 Femara (letrozole) Chemotherapy 1/6/2014 Halaven (eribulin) Chemotherapy 4/29/2014 Doxil (doxorubicin)
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Jul 14, 2014 08:53AM jeanieb2 wrote:

Has anyone had bone pain on this chemo?  I have had lots of bone and leg pain, or legs aching quite a bit for several days after treatment.  Also, I have noticed my skin is discoloring in places, around the waist band, under my left arm, by the implant, knees, it is just strange to see it doing this.  I can only think it is from this drug because there is no other reason for it to be getting darker.

jeanieb Dx 10/27/1992, ILC, 3/14 nodes, ER+, HER2- Surgery 10/28/1992 Lymph node removal: Right; Mastectomy: Left, Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Chemotherapy 11/8/1992 CMF Dx 6/2/2009, Stage IV, 2/17 nodes, ER+/PR-, HER2- Hormonal Therapy 6/14/2009 Femara (letrozole) Dx 6/2/2011, ILC, Stage IV, mets, ER+, HER2- Hormonal Therapy 6/2/2011 Aromasin (exemestane) Radiation Therapy 8/8/2011 Bone Chemotherapy 9/3/2011 Xeloda (capecitabine) Dx 9/9/2011, ILC, Stage IV, ER+, HER2- Radiation Therapy 1/15/2012 Bone Chemotherapy 9/5/2012 Taxotere (docetaxel), Xeloda (capecitabine) Dx 9/6/2012, Stage IV, ER+ Chemotherapy 4/3/2013 Taxotere (docetaxel), Xeloda (capecitabine) Chemotherapy 11/13/2013 Taxotere (docetaxel), Xeloda (capecitabine) Hormonal Therapy 3/5/2014 Aromasin (exemestane) Targeted Therapy 3/5/2014 Afinitor (everolimus) Chemotherapy 5/7/2014 Doxil (doxorubicin)
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Aug 4, 2014 08:07AM Annie62 wrote:

Bumping this thread to see how everyone is doing. Kara - I missed your question from 7/13. The chemo nurses always tell me to get in touch with them if I get mouth sores. There is a prescription mouthwash they can give you that helps heal and reduces pain. They are concerned about nutrition if you have trouble eating. I've had minor mouth irritation that I treat with baking soda rinses. That has worked so far. As for the teeth aching - I do get aches in some of my teeth and I figured I was grinding in my sleep. The dentist sees nothing wrong but boy is it annoying. Don't know if its related to the meds or not. 

Jeanie-I had some minor discoloration where my rash was - and I did get it under my arms at one point. My dosage was reduced and I haven't had a problem since. 

I've been doing well. I have some fatigue and this week I've had some stomach upset - pretty minor but annoying. Waiting on tumor markers and hoping they are still going down. If they are we are pushing my scan back another month (at least). If not I'll probably have one sooner. 

I've been enjoying my summer and have a bunch of free time with my daughter at camp right now. Hope everyone is doing well and Doxil is taking care of business!

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-
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Aug 4, 2014 02:31PM jeanieb2 wrote:

Annie62 - My markers are not going down at all since I started this, in fact they have stayed about the same.  I have had 3 doses and went last Thursday, July 31 for my 4th but the doctor put it off a week.  He did not like the looks of the skin issue, the red, sore and peeling, they said it was very dry so they prescribed an ointment to put on it 2 or 3 times a day, it has helped.  I had it bad between my fingers also and it has helped with that.  I will go this Thursday to see him again and I am pretty sure he will give me the next round but will cut the dose back.  I told him the markers were not going down, he asked if my breathing was doing OK, as I had cancerous fluid build up in the lungs twice and had them drained, I said the breathing was fine, so he said if that is good we will do this 4th treatment and then do scans next month to see if it is keeping it stable.  If it is I am sure I will stay on this one, it is so easy compared to the last one I took.  If it has progressed we will move on to another chemo.  I hope everyone is doing well with this one and that it is working for you all with no or very few side effects.

jeanieb Dx 10/27/1992, ILC, 3/14 nodes, ER+, HER2- Surgery 10/28/1992 Lymph node removal: Right; Mastectomy: Left, Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Chemotherapy 11/8/1992 CMF Dx 6/2/2009, Stage IV, 2/17 nodes, ER+/PR-, HER2- Hormonal Therapy 6/14/2009 Femara (letrozole) Dx 6/2/2011, ILC, Stage IV, mets, ER+, HER2- Hormonal Therapy 6/2/2011 Aromasin (exemestane) Radiation Therapy 8/8/2011 Bone Chemotherapy 9/3/2011 Xeloda (capecitabine) Dx 9/9/2011, ILC, Stage IV, ER+, HER2- Radiation Therapy 1/15/2012 Bone Chemotherapy 9/5/2012 Taxotere (docetaxel), Xeloda (capecitabine) Dx 9/6/2012, Stage IV, ER+ Chemotherapy 4/3/2013 Taxotere (docetaxel), Xeloda (capecitabine) Chemotherapy 11/13/2013 Taxotere (docetaxel), Xeloda (capecitabine) Hormonal Therapy 3/5/2014 Aromasin (exemestane) Targeted Therapy 3/5/2014 Afinitor (everolimus) Chemotherapy 5/7/2014 Doxil (doxorubicin)
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Aug 4, 2014 03:39PM Annie62 wrote:

Jeanie - Sorry to hear the skin issues have been so bad. My onc reduced the dosage and when I had a good month she increased in but not to the original level. Skin still okay. So maybe you should speak to your onc about reducing a bit no matter what.

What ointment were you prescribed? Just curious.

Keeping my fingers crossed that the doxil is working for you.

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-

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