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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Mar 14, 2014 11:59AM pearlady wrote:

Jill just did a little searching.  The ginger is Crytalized Ginger.  The attached site shows photo and you can also order from them.  Hope this is attached correctly.

http://www.nuts.com/driedfruit/crystallized-ginger/premium.html?utm_source=bing-ads&utm_medium=cpc&utm_group=112-CandiedGinger[1041]&utm_campaign=3-DriedFruit&utm_term=candied%20ginger&utm_type=Exact

Hormonal Therapy 6/29/1997 Dx 8/8/1997, IDC, 6cm+, Stage IIIB, Grade 1, 6/22 nodes, ER+/PR+, HER2+ Targeted Therapy 8/12/2001 Herceptin (trastuzumab) Dx 9/13/2001, IDC, Stage IV, Grade 1, ER+/PR+, HER2+ Hormonal Therapy 9/21/2001 Arimidex (anastrozole) Hormonal Therapy 11/1/2003 Femara (letrozole) Hormonal Therapy 1/5/2009 Aromasin (exemestane) Hormonal Therapy 1/5/2010 Targeted Therapy 4/4/2012 Afinitor (everolimus) Targeted Therapy 7/5/2012 Afinitor (everolimus) Targeted Therapy 7/10/2012 Perjeta (pertuzumab) Chemotherapy 8/12/2013 Abraxane (albumin-bound or nab-paclitaxel) Chemotherapy 3/22/2014 Halaven (eribulin) Targeted Therapy 3/1/2015 Ibrance (palbociclib) Hormonal Therapy 3/3/2015 Femara (letrozole) Targeted Therapy Perjeta (pertuzumab) Hormonal Therapy Chemotherapy Targeted Therapy
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Mar 14, 2014 12:02PM pearlady wrote:

Jill I don't think that the link I attached was correct.  But if you search for Crystalized Ginger, there are several companies that you can order from.  I've found it to be extremely helpful. 

Hormonal Therapy 6/29/1997 Dx 8/8/1997, IDC, 6cm+, Stage IIIB, Grade 1, 6/22 nodes, ER+/PR+, HER2+ Targeted Therapy 8/12/2001 Herceptin (trastuzumab) Dx 9/13/2001, IDC, Stage IV, Grade 1, ER+/PR+, HER2+ Hormonal Therapy 9/21/2001 Arimidex (anastrozole) Hormonal Therapy 11/1/2003 Femara (letrozole) Hormonal Therapy 1/5/2009 Aromasin (exemestane) Hormonal Therapy 1/5/2010 Targeted Therapy 4/4/2012 Afinitor (everolimus) Targeted Therapy 7/5/2012 Afinitor (everolimus) Targeted Therapy 7/10/2012 Perjeta (pertuzumab) Chemotherapy 8/12/2013 Abraxane (albumin-bound or nab-paclitaxel) Chemotherapy 3/22/2014 Halaven (eribulin) Targeted Therapy 3/1/2015 Ibrance (palbociclib) Hormonal Therapy 3/3/2015 Femara (letrozole) Targeted Therapy Perjeta (pertuzumab) Hormonal Therapy Chemotherapy Targeted Therapy
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Mar 14, 2014 04:05PM JillThut wrote:

Thanks, pearlady

Funny you should send this today.  I went to my journaling group today...only outing I try to do these days other than treatments...had made a hair appt around the corner and had some time to kill and stopped into a small whole foods store and they had lots of ginger candies.  I was trying to decide between the crystallized ginger or another one that looked like gumdrops..I opted for the gumdrop one...should have picked up both.  Maybe I'll pick the other one up after next Fridays journaling...or even better ...have my sister pick it up since she works nearby and lives walking distance from me.  It would fall under the category of something concrete someone could actually do for me so I should let her!

bone, liver and brain mets Jill Dx 10/6/2009, Stage IV, mets Dx IDC, Stage IV, Grade 3, 0/8 nodes, mets, ER+/PR+, HER2-
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Mar 21, 2014 12:50AM lostinmo wrote:

I hope the ginger helps.

Quick question, I keep getting little rash patches that itch on my arms and legs. I don't remember getting into anything. Could it be the Doxil?  This just crossed my mind. 

Dx 3/7/2012, IDC, 6cm+, Stage IIIC, Grade 3, 3/13 nodes, ER-/PR-, HER2- Chemotherapy 3/30/2012 AC + T (Taxol) Surgery 7/19/2012 Lymph node removal: Left, Underarm/Axillary; Mastectomy: Left Radiation Therapy 8/25/2012 Breast, Lymph nodes Dx 12/31/2013, IDC, Stage IV, mets, ER-/PR-, HER2- Chemotherapy 2/11/2014 Doxil (liposomal doxorubicin)
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Mar 21, 2014 02:22AM bhd1 wrote:

lostismo i had that rash last tx, 

barb Dx 9/22/2011, IDC, 3cm, Stage IV, Grade 3, ER-/PR-, HER2+
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Mar 21, 2014 12:54PM Annie62 wrote:

Hi all, wanted to check in as I'm about to get my third doxil infusion tomorrow. I've been feeling pretty good and I like this going 1x per month thing. Other than hair loss and feeling off the week after infusion, I'm doing well. Not sure when I'll be getting a scan but I'm due for markers next week. Not a reliable indicator for me since they are never very high, but if they are down, I'm taking that as a good sign. 

Jill - a former colleague of mine got me some candied ginger/crystallized ginger at an Asian supermarket. I find it does help a little bit with mild nausea. I mostly drink plain peppermint tea. It helps me burp and then the queasy feeling goes away. I get queasy eating anything for about a week after treatment. But once I belch I feel better. I hope you get a good 'system' going to alleviate that feeling. It stinks. I also bought Mylanta liquid to replace TUMS that I was taking. It has simethicone in it which is what they put in baby drops to prevent big gas bubbles in the stomach. It makes lots of small bubbles so I've had less abdominal distress. 

Lostinmo, Just this past week I got a slight rash on my arms and legs. It's itchy and annoying but not horrible. I'm going to mention it at my treatment next Tuesday and see what the doctor says. 

Have a great day everyone,

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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Mar 23, 2014 02:04AM - edited Mar 23, 2014 03:37AM by bhd1

Jill  , have you had any relief ? did you get the ginger?  Be careful , It irritated my mouth,.  My hand foot  issues are getting worse.  Blisters and swollen feet.   Burning hands and feet.  It is painful, but not as debilitating as nausea.

barb Dx 9/22/2011, IDC, 3cm, Stage IV, Grade 3, ER-/PR-, HER2+
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Mar 23, 2014 11:06AM JillThut wrote:

the crystallized ginger does bring some relief but it's short lived.

bone, liver and brain mets Jill Dx 10/6/2009, Stage IV, mets Dx IDC, Stage IV, Grade 3, 0/8 nodes, mets, ER+/PR+, HER2-
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Mar 23, 2014 11:19AM curveball wrote:

I used up the last of the crystallized ginger I had, which had been sitting in my spice shelf for several years. What I just bought at the store is not nearly as helpful. I think what I had before had dried out quite a bit and was more concentrated....more ginger and less sugar in a bite. So maybe I will try making the homemade after all.

Oncotype score 28--Age 56 at initial DX--mets found at 57 (but I suspect they were there from the start)--mixed IDC & carcenoid (neuroendocrine) tumor. Octreotide (a carcenoid treatment) June-Sept 2013, failed. Dx 3/23/2012, IDC, 1cm, Stage IB, Grade 2, 1/13 nodes, ER+/PR+, HER2- Chemotherapy 7/18/2012 CMF Hormonal Therapy 1/10/2013 Arimidex (anastrozole) Dx 2/26/2013, IDC, 1cm, Stage IV, Grade 2, 1/13 nodes, mets, ER+/PR+, HER2- Hormonal Therapy 6/3/2013 Aromasin (exemestane) Chemotherapy 10/30/2013 Taxol (paclitaxel) Chemotherapy 1/22/2014 Doxil (liposomal doxorubicin) Hormonal Therapy 4/7/2014
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Apr 2, 2014 11:41PM bhd1 wrote:

how is everyone doing on doxil?   I had 5 tx  and currently on 2 wk break because of hand/ foot syndrome

barb Dx 9/22/2011, IDC, 3cm, Stage IV, Grade 3, ER-/PR-, HER2+

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