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 12, 2014 06:18PM JillThut wrote:

not doing well actually...stable or not I'm nauseated 24/7 despite what I do to stay on top of it so I'm usually home either in bed or in my recliner.  A little hand foot syndrome..mouth sores from time to time.  I can deal with any of that. It's all nothing compared to being constantly nauseated.

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 12, 2014 06:54PM bhd1 wrote:

oh Jill , i  am sorry.  I have been feeling nauseated .  Thought it was the vitamins.  Maybe not.  

barb Dx 9/22/2011, IDC, 3cm, Stage IV, Grade 3, ER-/PR-, HER2+
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Mar 13, 2014 12:39AM lostinmo wrote:

Jill, sorry about the nausea. wish I knew some trick that might help. About the hair, I may have misheard but really thought they told me that I might not loose mine

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 13, 2014 01:17AM curveball wrote:

@JillThut, I know it's an obvious suggestion, but have you tried ginger candies for that nausea? I have been finding that a small piece of crystallized ginger works really well for me when my stomach is unsettled. Better than Tums even. I hope you can find something to give you relief from nausea. 

My hair is growing back too, at least at the moment. Almost all of it came out when I had taxol the end of last year. My last taxol was Dec 31, and my first Doxil I think four weeks after that, and I think my hair has been growing almost since I stopped the taxol. It is long enough now so I can bear to look at myself in the mirror, which I couldn't when I was bald. It isn't long enough to keep my head warm outdoors, so I am continuing to wear hats because I won't know until late this month or early April whether the Doxil has worked and I will continue it, or whether I will have to switch again, to something that will make it all fall out again. If I will be continuing Doxil and my hair keeps growing, it may be long enough by Easter Sunday that I won't be embarrassed to appear without a hat, and warm enough by that time that my head won't freeze if I do.

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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Mar 13, 2014 05:02AM bhd1 wrote:

where do you get the ginger ?

barb Dx 9/22/2011, IDC, 3cm, Stage IV, Grade 3, ER-/PR-, HER2+
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Mar 13, 2014 10:10AM pearlady wrote:

bhd1 I you can get ginger at some supermarkets.  Not sure where you live, but I've gotten it at Whole Foods, but I've also seen it at various health food stores.  What I bought was dried ginger which was slightly sweet, same as other dried fruit.  Very tasty.  I also bought a drink at Whole Foods which is made with giner, green tea and pepper.  Sounds terrible but it really works and keeps well.  I typically take a small drink of it anytime I'me feeling a bit off.

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 13, 2014 11:24AM JillThut wrote:

Someone did suggest ginger to me a while back when I was often severely nauseated.  In that case..nothing has worked for me.. not zofran, not emends, not aloxi...nothing.  But now it is not severe...more like mild nausea...just ever present!  I constantly have to sit up and burp and use all the ammunition I have to remain unconstipated.  It's a struggle 24/7. And I do actually vomit sometimes..usually bile.  But it is probably a good suggestion to revisit something like ginger since it is mild enough that that just might help.  Plus I'm not limited to how much I can use.  The zofran works for about an hour, then I have to wait another 7 hours before I can take it again.

If I pull on my hair it does come out but not in massive clumps like it did the first two times I lost it so I think that might be due to dry weather or Spring.  In any case..going to have my daughter color it tonight and have her friend try to give it some shape tomorrow.

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 13, 2014 01:00PM - edited Mar 13, 2014 01:03PM by curveball

@bhd, I've forgotten where I got it. It was some candied ginger I had left over from a batch of chutney. I am going to look for it in the bulk foods section at Fred Meyer today. If they don't have it, maybe I will try making some homemade. I've already been looking around for recipes online and found several, but I would like to find one to make it in a slow cooker so I don't have to watch it so carefully. You might also be able to buy it online, perhaps from a specialty baking or cookery site. If I can't find it locally, and decide not to try the homemade or it doesn't work well, I'll look online too.

@JillThut, Another thing I think may be helping me with gas/bloating/belching, which has been a major annoyance to me during chemo tx, is digestive enzymes. These were suggested by a naturopath I consulted last month to see what vitamins/supplements might help relieve side effects. It might be worth checking with your oncologist to see if there is any reason not to try the enzymes. I only started taking them last week so it is hard to say whether I have less gas because of the enzymes or only because Doxil is monthly and it had been two weeks since the infusion. During my first chemo right after surgery, I asked my oncologist what to take for the gas, and simethicone was what he suggested, but it helped very little if at all. I also tried probiotics (with his OK) during my first chemo, and they didn't help either. That was my original onc, before I moved. My current doctor recommends no probiotics while on chemo. I think her concern is that live bacteria may get out of control. The naturopath thought they might be helpful, but I will acquiesce to Dr W's (onc) bar on probiotics, because they didn't help anyway when I tried them before.

My hair doesn't come out when I pull on it with my fingers. Some people experience color change with new hair after chemo, but as much as I can tell mine is coming in the same color as before. I didn't realize until it came out and I had it in my hands how much greyer it was in the front than in the back. My hair is also straighter and grows faster in front than in back.

@pearlady, I tried homemade ginger extract, ginger candies and ginger tea, but for me they didn't work as well as candied ginger.

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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Mar 13, 2014 04:40PM pearlady wrote:

Curveball I think what I had was candied ginger.  I bought it at Whole Foods.  It was very large pieces of ginger which were coated. Its great to dip in tea.  I've also found it in some health food stores.  I don't find ginger tea very helpful either. The candied ginger looked very much like dried fruit. 

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 13, 2014 05:23PM JillThut wrote:

I just ordered some ginger candy...but it's probably not the "candied ginger" you're all talking about.  I think it's a hard candy.  I also ordered some queasy pops which an infusion nurse recommended a while back and gave me some.  I've used them in the past...can't say they'd be super when very nauseated but if you're just very queasy 24/7 as I am I'm hoping either the ginger or the queasy drops (actually I ordered the drops this time and not the pops) will help tide me over between zofran doses.

Also after my last infusion I had an appt with a liver specialist/gastroenterologist specifically to address the nausea and she recommended probiotics and a prescription antacid.  I've been taking both of those daily.  It has seemed to reduce the gas and bloating and I've been switching off my remedies for constipation which this doc said is a good idea.  But even without being constipated I'm pretty much always nauseated...especially with movement which is why I think it is not an effect of Doxil but rather the result of massive disease in the liver.

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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