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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Aug 15, 2014 02:01PM jeanieb2 wrote:

Annie62 - I know what you mean about the dog being afraid of a cat.  My daughters dog hides behind her when she brings her to our house if the cat is lurking around, it is funny.  It is hard to lose a pet, they are certainly one of the family.  I have two girls and, Jennifer has 2 dogs and Jessica has 3 dogs.  Neither is married, Jennifer is engaged but they both love their dogs.  I had a dog when I was younger but after I was married and the girls were born they wanted cats so we got them a cat for Christmas.  Jennifer started out with a cat when she moved out on her own and some how I ended up with it, which is OK with me, she keeps me company sometimes.  Although a cat certainly comes around in their own time and dogs are always there when you need them. 

I have been more nauseated this time and am beginning to wonder if it is what I eat.  I do not eat much but sometimes after I eat I feel worse than before.  I am taking Zofran but am wondering if I should call and get something else.  I have promethazine and take that once and a while when the Zofran has not helped.  I will just watch what I eat the next few days and see if I can come up with a reason for it.  I am glad to see you post also to keep this going.  I am beginning to wonder if there are not very many taking this drug.  I know at one time there was a shortage but I thought I read where they had a good supply now.  It is hard to find anything out on this compared to some of the other chemos.  I hope you have a good weekend and can get out and enjoy it.

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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Aug 18, 2014 09:55AM Annie62 wrote:

Jeanie - I would definitely speak to your oncologist about the nausea. There may be something else they can do for you. Nausea is really the pits. When I feel it coming on I drink peppermint tea. It helps. I also find a short easy walk can help when its not too bad. Walking when I feel off often makes me belch and then I feel better. I find I feel more nausea when I have a lot of gas. Have you tried acupressure or any other alternative treatments for nausea. I haven't had too but I think some women here have had some luck with that. 

I could be wrong but its my impression that Doxil is not one of the first drugs prescribed for bc. It was originally for ovarian cancer I think. Also its basically Adriamycin that is coated so for people that weren't metsters from the get go, they may have had adriamycin as part of their initial treatment and if a short period has passed, it wouldn't be a first choice. I did take Adiamycin but it was in 2005 (and I didn't have a recurrence until 2010) so it was an option for me. Also Adriamycin (so I suspect Doxil too) can cause heart problems in some so there may be people who can't take it if they have heart issues. 

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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Aug 18, 2014 11:37AM jeanieb2 wrote:

Annie62 - I will tell the onco the next time I see him or if the nausea gets worse I will call.  I do not seem to have much gas and have tried to figure out if it happens when I am hungry, after I have eaten, tired or just what may be causing it but have found no rhyme nor reason to it so figure it is just the Doxil itself.  I do know I get more nauseated when I am fatigued and if I lay down for a couple hours it helps some.  I may try the peppermint tea thing, I am not a tea drinker at all but may be able to try the peppermint tea.  I have not tried any of the alternative things.  As for a walk, I may try that, the only thing is I have no energy at all and just doing things around the house is a chore for me, then again, I know that some exercise gives you more energy.  I have to say I have been so tired this time, not able to sleep real well some nights but having a hard time putting one foot in front of the other some days.  I know that is typical so I just deal with it.

I kind of remember reading that Doxil was originally for ovarian cancer now that you mention it.  I did know it is in the Adriamycin family but with some coating that is not suppose to affect your heart like Adriamycin does but they still monitor the heart.  I just feel this is not doing much for me so have the feeling I may be moving on, but will find out September 4, hope I am wrong as this has been an easier one for me.  When I was first diagnosed back in 1992 I took Cytoxan, Methotrexate and 5FU, then when it hit again in 2009 I just did the Femara for 2 years then Xeloda, then Xeloda along with Taxotere and now on to Doxil so do not know what they will try next.  I have had a lot of hip and bone pain, do not know if this is the Doxil or from the mets, it bothers quite often.  I am hoping it is the 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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Aug 26, 2014 08:00AM SyrMom wrote:

The insurance company is dictating this to be the next chemo (been on taxol for almost a year & it's now failed me)!  Not liking it, but not much I can do about it, some NCCI standard.  Go for the echo next week.  

I understand from many pts. this is a tough one.  Any and all experience/advise I'm open to.   

Thanks ...


 

Dx 9/22/2010, IDC, 2cm, Stage IV, Grade 2, 2/2 nodes, mets, ER+/PR+, HER2-
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Aug 26, 2014 02:12PM jeanieb2 wrote:

SyrMom - I have to say I have not found this to be a tough one.  It has its side effects as they all do but I have found I can function pretty well on this one.  I have fatigue, and nausea which I take Zofran for when I need it as it comes and goes, constipation which is a very big change for me.  I usually get a headache and bone pain for a few days after treatment.  I did have some issues with my skin getting very red, then turning brown and peeling like a sunburn but only in certain places.  I also had a little problem with my hands so the onco had me wait for 5 weeks instead of the 4 and it was better.  He also reduced the dose.  I know others have had other problems but this was certainly easy for me compared to Taxotere which I took before this one.  When I get treatment the nurses wrapped my feet and hands with an ice pack on them, they say this helps with the hand and foot syndrome.  I hope you do well on this and have very few, if any side effects.  Keep us posted on how you are doing on it and any side effects you may have.  Any questions please do not hesitate to ask, I have taken this for 4 months so not a long time and do not have a lot of answers but others will be able to help if you ask.

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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Aug 26, 2014 06:38PM Annie62 wrote:

Syrmom- I also have found this fairly easy to tolerate. I love only having to go once a month. My hair grew back. The rash/dry skin is sometimes an issue but if you are strict about moisturizing and if needed, reduce the dose a bit, it isn't that bad. The past month I've had a little more digestive trouble (gas, appetite issues) but overall its been pretty good. I've been on it six months and hope to continue on it. My last scan it had shrunk my liver tumors. But my tumor markers are up and I'm due for scans in the next couple of weeks. Keeping my fingers crossed that I get to stay on this thread!

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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Aug 26, 2014 06:47PM SyrMom wrote:


jeanieb2 & Annie 62 - thanks so much for the information, it all helps.  I had the hand/foot syndrome on Xeloda real bad & the Xeloda ended up doing NOTHING for the cancer - struggled with those s/e all last summer!!  Have either of you had any cardiac problems/symptoms so far?  I fear the potential for heart damage. I've also feared not being able to control nausea or vomiting, that would really due me in.  Of course, I won't know any of this until I try.  Pls. keep me posted on your experiences and we can continue to share how we handle the s/e.

Dx 9/22/2010, IDC, 2cm, Stage IV, Grade 2, 2/2 nodes, mets, ER+/PR+, HER2-
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Aug 26, 2014 06:50PM SyrMom wrote:

Annie - when you said your hair grew back, did it continue to fall out initially and then grow back?  Or did it grow back after losing it to another chemo?  I lost my hair on taxol and it was starting to grow back while on taxol, so this was another disappointment to me.

Dx 9/22/2010, IDC, 2cm, Stage IV, Grade 2, 2/2 nodes, mets, ER+/PR+, HER2-
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Aug 30, 2014 06:59PM jeanieb2 wrote:

SyrMom - I have done Xeloda and had hand and foot syndrome real bad from it, it did keep my cancer stable for about a year and a half, then the onco added Taxotere to the regimen.  I have had a little hand and foot with this but nothing at all like I did on Xeloda.  I had lost my hair from the Taxotere I took before starting Doxil and it is growing back so you may not lose it at all.  My doctor said I would lose it, my nurse said I would not and another nurse said I may, but I have had 4 doses of it and my hair is growing in well.  As for the nausea, I have problems with that for a few weeks off and on so I try and take my Zofran on a regular basis, I have never vomited from it.  Overall I think it is a fairly easy one to tolerate.  I do have bone pain, hips and legs mostly.  I had scans yesterday and will find out on September 4 if this is working for me.  If it is keeping it stable we will probably continue with it, if it is spreading I am sure I will be moving on to something else.  If you have any other questions do not hesitate to ask, I will help if I can or I am sure there are others that will be able to answer also.  Hang in there, this is a very doable chemo, for me anyway, hope it is for you also.  It has not done anything to my tumor markers, they went up about 30 points after the first treatment and have not gone down or up since, so I am just waiting to see what the scans say.  I did have an echocardiogram on Thursday and the lady that did it said it looked good, nothing to be worried about at that time but they would have the doctor read it to know for sure.  The way she talked is if something had shown up they would have talked to the doctor right then and there.

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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Aug 30, 2014 10:57PM SyrMom wrote:

Thanks for the info ... first doxil is 9/8.  Have echo next week.   What do they give you for premeds?

Dx 9/22/2010, IDC, 2cm, Stage IV, Grade 2, 2/2 nodes, mets, ER+/PR+, HER2-

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