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 08:58AM

Posted on: Oct 22, 2013 08:58AM

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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Oct 1, 2014 03:15PM Woodylb wrote:

Hello ladies,

I got my FISH results back and they are negative. My MO  are disappointed because they believed it will give them more options. Still waiting for genomic testing from Germany, i should get the results in a week or so. 

Syrmom, i am sorry you are having problems with your feet on doxil but jeanieb is right Berks are good and comfortable too, i use them also. I hope you get some relief soon :). 

Jeanieb , i hope doxil shrink your tumors even if slow acting if it keeps it where it is with little side  effects and a good quality of life it will be good. I wish both you and Syrmom a good response. Hugs to both of you. 

Surgery 12/14/2010 Lumpectomy: Right; Lymph node removal: Right, Sentinel, Underarm/Axillary Dx 12/15/2010, ILC, <1cm, Stage IIIB, Grade 2, 22/23 nodes, ER+/PR+, HER2- Dx 12/15/2010, ILC, <1cm, Stage IIIB, Grade 1, 21/23 nodes, ER+/PR+, HER2- Hormonal Therapy 8/31/2011 Femara (letrozole) Radiation Therapy 8/31/2011 Breast, Lymph nodes Dx 12/10/2013, ILC, Stage IV, Grade 2, ER+/PR-, HER2- Chemotherapy 1/5/2014 Carboplatin (Paraplatin), Gemzar (gemcitabine), Taxol (paclitaxel) Hormonal Therapy 5/27/2014 Aromasin (exemestane) Dx 10/15/2014, HER2+ Targeted Therapy 11/9/2014 Herceptin (trastuzumab) Targeted Therapy 11/9/2014 Perjeta (pertuzumab) Chemotherapy 11/10/2014 Taxol (paclitaxel)
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Oct 2, 2014 12:28AM Annie62 wrote:

Hi ladies - wanted to pop in and say hi altho I'm off the doxil. I did not have bad foot syndrome but I found wearing soft slippers when I needed to wear something worked. LLBean and Landends both sell fleecy comfortable slippers I wear. I also wore slip on soft low Clarks sandals. Again my feet weren't horrible but did get a dry rash all over them.

Udder cream went on soft and didn't sting them. I also like that for my hands. Recommeded by oncs office.

Good luck to you all.

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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Oct 2, 2014 05:33AM SyrMom wrote:

Hi Ladies, thank you for all of your tips & experience; thought when I was o Xeloda I had tried them all, but keep on experimenting!

Go for my second infusion Monday; was discouraged to find out my markers went up 4 pts, been trending up.  Get scanned 2 weeks after next infusion - thinking that's too soon, but they say not; will be 3 months following my last.  Have a feeling doxil could not do it's work in that time frame, but who knows.

Take care ...  

Dx 9/22/2010, IDC, 2cm, Stage IV, Grade 2, 2/2 nodes, mets, ER+/PR+, HER2-
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Oct 2, 2014 06:19AM Annie62 wrote:

syrmom- i don't mean to be rude but 4 pts is nothing. that is normal variation. Good luck. I hope the doxil gives you a  long ride. I found I could actually make plans on it to do things.

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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Oct 2, 2014 07:11AM SyrMom wrote:

Annie62 - I'm not offended & understand what your saying.  In my case it's the trend, not the actual number & this is the 3 month it's gone up!  That's my concern.

Dx 9/22/2010, IDC, 2cm, Stage IV, Grade 2, 2/2 nodes, mets, ER+/PR+, HER2-
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Oct 2, 2014 09:00AM Woodylb wrote:

Syrmom, 

I am sorry for the rise of your markers, but i think you should do the scan if the tumors are stable then the markers may be a reaction to doxil and will go back to normal. I hope this is the reason and nothing else. As always you are in my prayers. ((HUGS))

Surgery 12/14/2010 Lumpectomy: Right; Lymph node removal: Right, Sentinel, Underarm/Axillary Dx 12/15/2010, ILC, <1cm, Stage IIIB, Grade 2, 22/23 nodes, ER+/PR+, HER2- Dx 12/15/2010, ILC, <1cm, Stage IIIB, Grade 1, 21/23 nodes, ER+/PR+, HER2- Hormonal Therapy 8/31/2011 Femara (letrozole) Radiation Therapy 8/31/2011 Breast, Lymph nodes Dx 12/10/2013, ILC, Stage IV, Grade 2, ER+/PR-, HER2- Chemotherapy 1/5/2014 Carboplatin (Paraplatin), Gemzar (gemcitabine), Taxol (paclitaxel) Hormonal Therapy 5/27/2014 Aromasin (exemestane) Dx 10/15/2014, HER2+ Targeted Therapy 11/9/2014 Herceptin (trastuzumab) Targeted Therapy 11/9/2014 Perjeta (pertuzumab) Chemotherapy 11/10/2014 Taxol (paclitaxel)
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Oct 3, 2014 12:39AM Annie62 wrote:

Ah, got ya Syrmom. I still hope its not a bad sign.

Hugs, 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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Oct 4, 2014 08:18AM jeanieb2 wrote:

I had my 6th round of Doxil on Thursday.  I had markers done but they were sent to a different lab, due to insurance stuff that is not settled.  When I received the call on Friday about the markers they had gone up 40 points.  I was not happy, I know that scans and markers go hand in hand and the month before the scans had some positive results and the markers had gone down 30 points.  I did expect them to go up a little this time because they had gone down so much the month before and all the months I have taken Doxil they had barely budged.  The doctors told me that the difference could be from going to a different lab, but I am not buying that, not 40 points worth anyway.  I will just have to wait and see what next month brings.  I am having an echo next month but scans will be either the end of November or end of December, I suppose it depends on if the markers jump up again.  I know I should not put so much worth into markers but it is hard not to.  I am just very disappointed and no one seems to understand, but I know you ladies completely understand.  When people ask how I am doing and I try to explain, they just say "Oh, well you are looking good", I know they are being nice but sometimes I wonder what we are suppose to look like????? and I do appreciate their compliments.  I am usually very upbeat about the whole situation and thankful to have had so many more years so this is not like me to vent but sometimes I think we all need to be able to that.  I think half my problem is we had all 3 bathrooms remodeled, painting and carpeting of the whole house, so I am packing stuff up, getting rid of things, then we had a large hail storm come through the 1st of June so we have the whole outside that needs to get done along with windows being replaced, that is also going on along with everything that is being done on the inside so I am getting a little tired and things always seem worse when we are tired.  
OK, I am done whining nowNerdy..........just had to tell how I was feeling.  I will get my mind back on track and quit worrying about this.  Hope you all are doing well and have a good weekend.

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 (liposomal doxorubicin)
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Oct 8, 2014 08:07PM 33skidoo wrote:

Jeannieb2,

When I started on doxil I started feeling better immediately.  My liver mets hurt whenever I tried to take a full breath of air, and I had been feeling generally cruddy.  But the doxil helped pretty quickly.  But my tumor  markers went up ALARMINGLY.  By hundreds of points.  But I looked good and felt good so my doctor decided to do one last doxil before switching me.  Miracle of miracles, the numbers started going down.  I've been on doxil several months and still feel better than I had, with the exception of hand/food syndrome.  It's a crappy side effect, but it beats the alternative!

Dx 8/2007, IDC, 1cm, Stage IV, Grade 3, 1/1 nodes, mets, ER+/PR-, HER2-
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Oct 14, 2014 11:05AM jeanieb2 wrote:

33skidoo - That is good to hear, did the doctor have an explanation for the markers going up so much while the other was improving?  I know my scans showed improvement except for a lymph node that had more than doubled in size, I had to have my lungs drained and they said there was absolutely no fluid on the right one which there had been in the past and the left one they drained off 350 instead of the 400 they had done in the past so that was a positive sign.  I need to just see what happens in the next couple of months but I find it so hard to do when your markers keep going way up, it seems to me that the cancer is spreading but I am probably wrong on that.  I am having a really hard time after this 6th treatment, I have been so nauseated, very, very low energy, low grade temp more than before.  I just do not feel very good and in the past I have really breezed through for the most part, always some nausea and low grade temp but this time is particularly bad for some reason.  I know the hand and foot syndrome can get pretty bad so be sure to take care of yourself.  I have not had much of an issue with it on Doxil, in fact I said it was an easy chemo for me but I think I may have to take that back after this last one Winking, I am sure next time will be better I was just surprised how crappy I have felt, I was not expecting it.  I hope my markers are down again as well as yours also, it would be great to have a good run on this chemo.  Keep me posted on how you are doing

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 (liposomal doxorubicin)

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