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+
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Sep 14, 2014 12:47PM jeanieb2 wrote:

Syrmom - I have constipation with Doxil.  I never, ever have had that problem, well I did have it some on Xeloda but I am usually the other way.  I found I just have to take Miralax, I get treatment on Thursday so I take it Saturday and Sunday night, I waited the first time I had Doxil and I was miserable so decided to just take it a couple days after treatment and that has helped.  Sometimes I will get Big D but that is usually 2 to 3 weeks our from treatment, but that is nothing new for me, I have always had that problem, just a very touchy stomach, wish I could get it figured out so I did not have that problem at all.

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)
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Sep 15, 2014 12:55AM SyrMom wrote:

jeanieb, yes, I have joined the constipation group for the first time ever.  Started the day following infusion.  Have NEVER had this problem, not fun!  Have had some mild nausea but afraid to take anything because of the constipation - makes it worse.  Not a fun week-end.  What do you mix the Miralax in?  I'm not one to drink stuff that tastes bad.

Dx 9/22/2010, IDC, 2cm, Stage IV, Grade 2, 2/2 nodes, mets, ER+/PR+, HER2-
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Sep 15, 2014 01:02AM SyrMom wrote:

How often is everyone getting their doxil?  I'm every 28 days or once a month.

Dx 9/22/2010, IDC, 2cm, Stage IV, Grade 2, 2/2 nodes, mets, ER+/PR+, HER2-
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Sep 16, 2014 09:43PM jeanieb2 wrote:

SyrMom - Sorry it has taken me so long but we have been on vacation and I do not always get a chance to check on here.  I mix the Miralax with water and yes, I have had constipation start the day after the infusion but I usually wait until Friday night to take it, I get treatment on Thursday so it is just the next day.  Miralax does not have a taste they say but sometimes I think I can taste it, probably all in my head or due to feeling nauseated, I still take the Zofran, even though it can cause constipation, I figure if I take the Miralax it will even out.  I may take the Miralax the day I get treatment and not wait until the next day.  You could mix the Miralax with coffee, juice, Gatorade, or whatever you enjoy drinking.  I get my treatment every 4 weeks, so sometimes it is twice in a month, depending on how the days fall, usually once a month but with it being given to me every 4 weeks it has happened twice in a month.  Hope this helps.  Hope you are doing better.  Keep me posted.

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)
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Sep 28, 2014 08:32AM SyrMom wrote:

Thanks for all your tips.  Nausea under control now, as is constipation - back to the chemo bar first Monday of October, so this is my last week "off".  Getting some symptoms of hand/foot - had it real bad on Xeloda, discouraging.  Hurts to walk.  Can't find any comfortable socks that are nonbinding and not too bulky - thinking of trying diabetic socks.  Anyone tried them and if so, where do you buy them?  Between the neuropathy, stress fx and hand/foot, my feet are a mess & I get very impatient trying to find solutions!!  Very depressing too as I can't do much & have no help in the home. 

On another note, I'm told I will get scanned in October after the next infusion.  Find this odd as it will only be my second infusion, wonder if that's enough time for it to work or not.  My last scan was Aug & I usually get them every 3 months, but though this one would be after at least 3 infusions.   

How's everyone else doing?

Dx 9/22/2010, IDC, 2cm, Stage IV, Grade 2, 2/2 nodes, mets, ER+/PR+, HER2-
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Sep 29, 2014 11:13AM jeanieb2 wrote:

SyrMom - I also am going for my 6th round of treatment on Thursday, October 2.  I do not wear socks or shoes.  I wear only sandals, I can not stand sock on my feet and found while on Xeloda that they made my hand and foot worse so only wore them if I absolutely had to in the winter, when I went somewhere, then they came off the minute I walked in the door or if I was somewhere where I could take them off I did so.  I know a lot of people say to keep lotion or something on them along with socks but I found the socks made them red and hot and so much worse so I did not wear them and got along much better.  I had scans after my fourth treatment and will not have them again until December unless my markers take a drastic jump then we will scan to see if something is progressing.  Also it took 4 treatments before my markers even budged down but had good results on scans and markers went down 30 points after 4th one.  I hope you are feeling well and the hand and foot is not getting any worse, it can certainly be miserable.  When do you go for your treatment?  Take care.

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)
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Sep 30, 2014 01:43AM SyrMom wrote:

jeanieb - my second infusion is next Monday.  Any particular sandals you wear?  Because of my foot stress fx I'm suppose to wear shoes/sandals that are more on the inflexible side.  However, nothing really helps as it just doesn't heal.  

Dx 9/22/2010, IDC, 2cm, Stage IV, Grade 2, 2/2 nodes, mets, ER+/PR+, HER2-
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Sep 30, 2014 06:35PM Woodylb wrote:

Syrmom, i hope you are doing well on doxil after taxol . Are you having hand and foot syndrome from doxil? I still hope you do well on it and pray for you and for all of us. I am on my seventh day on xeloda with no major SEs yet except sleeping and sensitivity on my hand nails and toes . I bought from the net der life lotion for the hands and foot and onicolife a gel for nails which are made with urea. They seem to help , the are made specially for traumatized nails hands and feet from chemo and radiation. 

This is their email if it can help you : www.againlifeitalia.com

Big hugs and i hope to hear good news from you soon. ((HUGS)).

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- Surgery 12/15/2010 Lumpectomy: Right; Lymph node removal: Right, Sentinel, Underarm/Axillary Hormonal Therapy 9/1/2011 Femara (letrozole) Radiation Therapy 9/1/2011 Breast, Lymph nodes Dx 12/10/2013, ILC, Stage IV, Grade 2, ER+/PR-, HER2- Chemotherapy 1/6/2014 Carboplatin (Paraplatin), Gemzar (gemcitabine), Taxol (paclitaxel) Hormonal Therapy 5/28/2014 Aromasin (exemestane) Dx 10/15/2014, HER2+ Targeted Therapy 11/10/2014 Herceptin (trastuzumab) Targeted Therapy 11/10/2014 Perjeta (pertuzumab) Chemotherapy 11/11/2014 Taxol (paclitaxel)
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Sep 30, 2014 06:42PM Woodylb wrote:

Jeanieb,

I see you are on xeloda like me how long did it take for the hand and foot syndrome to show? My MO told me to use pure aloe vera on them it seems to help. I also see you are ILC like me strange disease and very confusing:) . I don't  know if they will add something to xeloda later or not , but since this is my third line chemo they seem to prefer on single agent. Femara and ACT worked for me for three years then carbo gemzar got me to stable , i had no response at all on aromasin it actually lead me to a huge progression whoch led me to xeloda .i hope you do well on your combo and keep doing well. 

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- Surgery 12/15/2010 Lumpectomy: Right; Lymph node removal: Right, Sentinel, Underarm/Axillary Hormonal Therapy 9/1/2011 Femara (letrozole) Radiation Therapy 9/1/2011 Breast, Lymph nodes Dx 12/10/2013, ILC, Stage IV, Grade 2, ER+/PR-, HER2- Chemotherapy 1/6/2014 Carboplatin (Paraplatin), Gemzar (gemcitabine), Taxol (paclitaxel) Hormonal Therapy 5/28/2014 Aromasin (exemestane) Dx 10/15/2014, HER2+ Targeted Therapy 11/10/2014 Herceptin (trastuzumab) Targeted Therapy 11/10/2014 Perjeta (pertuzumab) Chemotherapy 11/11/2014 Taxol (paclitaxel)
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Oct 1, 2014 05:36PM jeanieb2 wrote:

SyrMom - I wear Birkenstocks, they are what I have had for years and have quite a few pair so I do switch off but they seem to work for me.  It seems like my feet do not sweat on the bottom with these.  I do have to say if I wear them all day,( which means I have done lots of walking because anytime I am home, sitting or in the car even, I take my sandals off), that my feet will burn in the evening but they do not get bad like they did when I took Xeloda and wore the socks or shoes.  I learned when I took Xeloda, NOT to wear the shoes and socks, it may be out of the norm but it does work for me.  I hope you can find some type of sandal or shoes that will not bother you to much.

Woodylb - I am not on Xeloda any longer.  I stopped that back in February.  I took Femara for 2 years then had progression so went to Xeloda for a year, had progression so my doctor added Taxotere to the Xeloda, continued with that until it progressed more in February of this year.  I switched to Aromasin/Affinitor, had problems with that so was switched to Doxil, which seems to be so easy for me to tolerate compared to the Taxotere.  I go tomorrow for my 6th treatment of Doxil, and hope that my tumor markers are down a little or at least what they were last time.  This has been a very slow acting chemo for me.  As long as it works I am not complaining as I can live with the side effects I have from it, no side effect is pleasant but I feel I can live a somewhat normal life on Doxil.

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)

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