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 6, 2014 10:42AM jeanieb2 wrote:

Annie62 - My onco is going to reduce the dose from what it was.  He told me last week he would take a look this week to make sure the skin issue was being resolved, which it is, then he said he would do treatment but back the dose off.  I am not sure what dose he will use, probably the same as the first time.  I am not real sure it is working, my markers have stayed the same through 3 treatments, I expected them to at least go down a little after the 3rd one.  We shall see what the scans say next month.  The ointment is Fluocinonide.  It has really helped with the dry red skin or else it was getting better on its own.  I really think the ointment made the difference as I could tell in the first day or so it was not so sore and less dry.  At least now I have this and if it happens again I can start using it right away.  I will start the Carafate on Saturday for the ulcer.  I do fine until about until about the 3rd or 4th day then I can tell the ulcer is starting to act up, this way I am going to try and head it off before it gets to that point and the onco agreed with me.  Hope you are doing well with 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 (doxorubicin)
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Aug 6, 2014 03:22PM TXGigi wrote:

jeanieb2

Had my second treatment of doxil.  Nothing new except fatigue and nausea.  However your post hit home.  Last week I had bone pain in my legs.  Could not sleep, almost like restless leg syndrome.  Took a clonasapam in order to sleep.  My shin bones, calfs and calves were literally killing me.  It was gone in the morning.  When I read your post I am assuming it is a side effect but went on internet and it said muscle/joint pain happens in only 10% of patients.

Take care and good luck

Dx 7/21/2009, <1cm, Stage IV, Grade 1, 1/7 nodes, mets, ER-/PR-, HER2-
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Aug 9, 2014 11:21AM jeanieb2 wrote:

TXGigi - I had my fourth treatment on Thursday and last night was one of the worst for the bone pain, hips, calves, legs, just could not get comfortable.  I did take 2 Tylenol but did not find it helped much, although it may have been worse if I had not taken them.  I was so tired I went to bed around 10 but could not sleep so at midnight I got up and took a Xanax, finally I was able to fall asleep sometime after 1.  I have been keeping a journal so that I can look back to see what has happened in the past and the bone pain has been happening each time.  I also have had to take something for an ulcer, but it does not start to bother until about day 10 so I am going to start the medicine around day 8 to see if I can stop it before it starts.  I also had some skin issues, the doctors said it looked like when a person has had radiation and they start chemo to soon but I have never had radiation where the skin discoloration and peeling was so we had to hold off a week and then he reduced the dose, well we tried to reduce the dose.  I was by myself, which my sister usually goes along, I looked at the bag and thought to myself, "boy that is sure going down fast" thinking they had changed the drip time, when it was done in about 40 minutes the nurse came in and saw a big puddle of red on the floor, it had leaked out somewhere, so they decided to give me another bag, 1/3 of what the original bag was, I think they can kind of figure out about how much you get by the amount of time it ran in.  We do not think the bag had a hole in it, maybe the tubing but we are not sure.  I know if anyone had been there they would have seen it but it is behind me so I could not see the mess it made.  I have to say I have had pretty good luck with this one as far as side effects.  My markers are not going down at all but will do scans in 4 weeks to see if it has been keeping it stable, if so I will stay on it, if not I will move on.  I hope you start to feel better and the nausea subsides, I do take Zofran for the first couple of weeks after, it seems to help, the fatigue comes and goes for me, some days I am just fine and another day I can hardly put one foot in front of the other.  Still better for me than Taxotere was.

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 (doxorubicin)
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Aug 10, 2014 10:51AM Annie62 wrote:

Jeanie - crazy story about the leak! I think you are right - they know how long it takes to infuse so they know how much to give you to make up for the spill. I've been slightly nausea and lightheaded this time around. I took a compazine but it didn't help much and the nausea is very mild so I'm just not bothering to take the meds. Sometimes I feel off then eat and it goes. 
Sometimes I fell off after I eat. I've also been very very gassy and I think that may actually be causing the nausea. I think I may start taking a probiotic and maybe gas-x and see if it helps.

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 11, 2014 01:44PM jeanieb2 wrote:

Annie62 - I also am nauseated off and on.  I will eat and feel ok, then sometimes I eat and feel nauseated, so I just take my Zofran when I feel that way or the Compazine, sometimes I take one and a few hours later the other one.  I also have been lightheaded or off balance this time.  I have not had that before but did notice it this time.  I have not had problems with gas, have constipation for about 8 or 9 days after treatment, so I take Miralax for several days.  About 2 weeks after treatment I usually end up with diarrhea so I never know from one day to the next which it will be.  I had the other chemo down to the day of when to expect things.  I am more tired and fatigued this time along with the off balance part, so I am being more careful when I go up and down the stairs.  I see you took Taxotere, did that one bother you much?  I was very sensitive to it and had 10 OK days out of the 21, it was a hard one for me, this one is so easy for me compared to Tax.. 

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 (doxorubicin)
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Aug 11, 2014 03:47PM Annie62 wrote:

Jeanie-re: taxotere - i did that way back in 2005 when I was orignally dx. It was really hard on me but it was a limited course of treatment not ongong like for us metsters. Doxil is overall one of the easiest chemos I've done.

I think the reason it may be difficult to 'time' the SEs is because it is a time-released drug. So you don't get the awful SEs right after treatment but they come and go over the 28 days.

Re the balance thing. I've noticed I've had some congestion and my ear is 'gurgling' sometimes. So I'll take a benedryl tonight and see if it dries it up. That may be contributing to the dizziness. 

I feel like such a complainer sometimes!

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 13, 2014 02:14PM jeanieb2 wrote:

Annie62 - You are NOT a complainer.    I think by telling how your feel it helps others.  If I see you post something on how you feel and I have felt it also, it makes me see that it may be another side effect of it and I feel better knowing that.  Besides where else can you go to tell how you feel and have someone understand just what you are going through.  I can tell my husband or kids but they do not understand, and I pray they never have to feel this way, but it helps if someone you know has been through treatment.  I do have my sister who went through treatment a year after my original diagnosis, she still remembers how it felt so she can understand.  I did not realize it was a time released drug, that would explain why I feel worse as the time goes on.  With Taxotere I felt worse for the first 11 or 12 days and then felt better after that, with this I seem to feel pretty good but noticed about 2 weeks in the rash and hands getting bad, although I have noticed this week I am a little more fatigued than I remember being.  I suppose that could be an accumulating effect as this was my 4th treatment of it.  Thanks for letting me know it was a time released chemo and any other info you have is greatly appreciated.  I hope you are feeling better and not so dizzy.  I have been a little off balance this time, nothing like Tax was but I have not noticed this before on Doxil so I was glad to hear you felt that way also, well not glad you are dizzyWinking but that I am not the only one feeling that way.  Take care and I look forward to your posts.

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 (doxorubicin)
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Aug 13, 2014 08:09PM Annie62 wrote:

Aww thanks Jeanie.

Glad to report the benadryl is working. Dizzy spells gone! 

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 14, 2014 12:31PM jeanieb2 wrote:

Annie62 - I am glad to hear your dizzy spells are over and the Benadryl helped.  I am just a little off balance once and a while, but not bad.  I think it is getting better.  I am a lot more nauseated this time so I do try and take my Zofran on a regular basis if I remember.  Usually I remember about the time I start to feel sick, but if I take it and lay down for an hour it helps.  Is that a picture of your dog, she is beautiful, what kind is it?  My daughter has a darling, loveable pitbull mix that has the same coloring and kind of looks like her only a shorter nose I think.  I am an animal lover, love them all.  Hope you are doing well.

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 (doxorubicin)
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Aug 14, 2014 02:10PM Annie62 wrote:

Jeanie - thankfully my nausea has improved too along with the lightheadedness. Probably related. 

Currently I have a black lab mix. Probably has some hound in her. She is lying patiently next to me waiting for me to walk her as I type.! She's a tough girl who likes to run in the woods.

My avatar was my prior dog. He was a shepherd mix and we are pretty sure there was some pit bull and maybe some chow in him. He was a scaredy cat of a dog who was ball obsessed. Still miss him so I keep him as my avatar. I too am a sucker for animals. 

Thanks for keeping this thread alive with me! We'll keep each other from getting lonely in here. :)

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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