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

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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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Aug 31, 2014 07:36AM SyrMom wrote:

Anyone had any issues with your nails on doxil?  While on taxol I kept dark polish on as the light tends to make them loosen faster.  They're not perfect, but after 38 infusions still haven't lost any, yet.

Dx 9/22/2010, IDC, 2cm, Stage IV, Grade 2, 2/2 nodes, mets, ER+/PR+, HER2-
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Sep 1, 2014 11:20AM jeanieb2 wrote:

SyrMom - I get an anti-nausea medication, either Aloxi or Emend, or both and that is it.  As for the nails I have had no issues with them on this.  When I took Taxotere I had problems and had to have the toenails on my big toes removed as they had abscessed and they are growing back but no other problems with Doxil.  The nurses do put ice packs on the bottoms of my feet and I have to keep my hands on ice packs during the infusion, something to do with the hand and foot syndrome, I do think it has helped, other than that it is a fairly easy one for me.  I hope it is an easy one for you also.

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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Sep 2, 2014 09:56AM Annie62 wrote:

Syrmom, I have had no nail issues. My hair grew back after losing it to Abraxane. I don't get numbness in my hands or feet but they are more sensitive especially my hands. I'm careful opening jars and don't grip things very tightly. I use Udder Cream on hands and feet and anywhere I might feel a rash coming on (waistband). I wear a lot of stretchy skirts to avoid getting a rash on pressure points and go 'commando' with longs skirts. Hope that wasn't TMI lol. For pre;meds I get an anti-nausea drug (I think Emend), steroids (I got red and hot the first infusion so they slowed down the drip and added the steroid). I have had no cardiac issues. I've never thrown up or had uncontrollable nausea on this. I've had mild stomach upset on occasion. Annoying but not debilitating.

Hope this helps. Off to buy the last of the school supplies. My daughter starts back tomorrow.

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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Sep 3, 2014 08:08AM Annie62 wrote:

Aargh. Sorry ladies but I'll be moving on. My latest scan showed progression in the liver. I was really hoping for more time on Doxil. It's been easy to tolerate, only required one visit a month and the last scan had showed significant improvement. I wish you the best and hope Doxil kicks but for you for longer than the 6 months I got.

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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Sep 5, 2014 01:02PM jeanieb2 wrote:

Annie62 - I am sorry you are not able to continue with Doxil.  Do you know what you will be moving on to?  I hope that whatever it is it will do the job for a long time.  Please keep us posted on how you are doing and what you are moving on to.  I had scans and treatment yesterday.  My bone scan was exactly the same so no change at all, echo cardiogram was the same so that was good, the CT scan was about the same, a slight improvement, so it all was good, and my markers had FINALLY gone down 30 points, they had not budged since I started but they finally went down so overall I am very happy as this is a very easy chemo to tolerate.  I will have scans again in 4 months unless markers should raise a lot then he would scan to see what was gong on.  They did mention one lymph node that had gone from 4 mm to 9 mm but my onco was not concerned about it at all, he said everything from his standpoint was good.  He did ask how I was feeling, I said just fine so we did another treatment of Doxil.  I do know I have lots of bone pain but after the scan showed no change I am beginning to think it is the Doxil, that is all it could be.  I do take Zometa monthly but have never had a problem with it and last night after treatment my bones really hurt at 4 AM so much it woke me up.  I have tried Tylenol and usually it helps but this morning it did not help but that is OK, as long as it is not the cancer spreading I can deal with it.  Please 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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Sep 5, 2014 01:58PM Annie62 wrote:

Jeannie- I don't know what I'll be doing next but I'll stop by and let you know and say hi. Congratulations on the improvement in your scans. I'm doing the happy dance 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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Sep 6, 2014 09:50AM SyrMom wrote:

Annie62 ... so sorry to hear doxil has failed you - I know the feeling well, unfortunately.  I got almost a year out of taxol before it failed me.  I begin doxil on Monday and have a lot of anxiety about it, just hope it does something positive & I can tolerate it.  Please let us know what you move on to & how you are doing.

Annie & Jeanie - have either of you have problems with lower extremity swelling while on doxil?  I'm having problems with it coming off taxol - capillary leakage.  Not sure how long it will take to go away.  That along with my stress fx on the foot makes walking difficult!! 

Dx 9/22/2010, IDC, 2cm, Stage IV, Grade 2, 2/2 nodes, mets, ER+/PR+, HER2-
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Sep 7, 2014 11:09AM Annie62 wrote:

Syrmom- I haven't had any issues with swelling at all on Doxil. I hope you get that solved quickly.

And try not to stress about the Doxil. Most of the folks I know who took it did well side effects wise.

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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Sep 7, 2014 01:40PM 33skidoo wrote:

SyrMom,

I'm currently on Doxil and have had some issues with  minor swelling of lower extremities, but honestly, not any worse than i have had on other chemos.  My doctor also attributes it to leaky capillaries.  A little Lasix cleared it right up.  Good luck!

Dx 8/2007, IDC, 1cm, Stage IV, Grade 3, 1/1 nodes, mets, ER+/PR-, HER2-
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Sep 7, 2014 09:02PM jeanieb2 wrote:

SyrMom - I have had not problems with swelling.  I had some hand and foot issues, skin disorder, it was like a sunburn, it was real red, peeled and turned brown and I have not had radiation anywhere near that area.  My other side effect was an ulcer but I have medicine to take about 9 or 10 days after treatment, constipation, some fatigue, nausea off and on the first week or so but I take Zofran for that and it does help.  I do have bone pain quite often, more at night so I take Tylenol and sometimes it helps and others it does not.  For the most part this one is very doable for me, I feel I can live with this one and feel somewhat normal compared to Taxotere.  I hope you do well with this and have no or very few side effects. 

I wondered if other people on this have the bone pain.  I just had a bone scan and it had not changed so it is not the mets.  The only thing I can attribute it to is the Doxil but just wondered if anyone else has had 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 (liposomal doxorubicin)

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