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

Forum: Stage IV and Metastatic Breast Cancer ONLY —

A place for those managing the ups & downs of a Stage IV/metastatic breast cancer diagnosis. Please respect that this forum is for Stage IV members only. There is a separate forum For Family and Caregivers of People with a STAGE IV Diagnosis.

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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May 30, 2014 08:13AM - edited May 30, 2014 08:16AM by Annie62

TLEB, Re: the mouth sores - I had minor mouth irritation the first two treatments. I rinsed my mouth with baking soda and water as recommended by the nurses at the infusion center.  It did the trick.  The nursing staff was pretty adamant that if I get any sores to get in touch with them right away. They don't want them to become 'advanced' and prevent me from eating and from becoming harder to get rid of them. I think there are mouth washes etc they can prescribe. 

Jeanne - I do think Doxil has gotten easier. I haven't had a recurrence of the awful rash I had at the second treatment, and although I have some minor tummy troubles, they don't seem as severe to me. I make sure to take it easy on day 3-4 after treatment and drink lots of water to prevent fatigue. I tend to eat oddly for a couple of days after treatment too. I crave sweets (and eat them!) and eat stuff like cereal for dinner and usually only eat 2 meals instead of three. I only eat if I feel like it and I'm back to normal within a couple of days. I hope you find it gets easier for you. 

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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May 30, 2014 08:17AM Annie62 wrote:

Can't believe I forgot to post this! My onc called yesterday with my tumor marker results from last Tuesday. They dropped again from 120 to 80. Yippee! 

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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May 31, 2014 11:06AM jeanieb2 wrote:

Annie62 - That is great news on your tumor markers, Congrats!!!  I love hearing those kinds of results.  I will go again this Thursday for my second treatment of Doxil and I am not expecting my markers to have gone down, in fact I figure they will go up a little, it seems like mine always go up a time or two before they start down when I start a new treatment.  I appreciate the input on it getting a little easier.  I knew what to expect from Taxotere and am now trying to adjust to this one.  I will remember what you said about drinking a lot of water and taking it easy the 3rth and 4th day.  I know I went back for blood counts 9 days after treatment and they had not gone down so that was a good thing.  I don't know if this affects blood counts much or not.  

I can not find much about this drug, only what I see here and from the Doxil site itself.  I don't know if it is an older or newer drug, I will ask my onco when I see him Thursday.  I am just hoping this one will work.  I also was wondering if anyone lost their hair.  Mine is growing back but the onco said I would lose my hair and the nurse said I would not, just wondering, not that it matters as I am still wearing a wig because it has a long way to go before I can go without it.

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 (doxorubicin)
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May 31, 2014 01:50PM bhd1 wrote:

my scans were after third tx.   I did well on doxil.  Lasted six months, which for me is long.  Only prob was hand/ foot

barb Dx 9/22/2011, IDC, 3cm, Stage IV, Grade 3, ER-/PR-, HER2+
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May 31, 2014 05:12PM jeanieb2 wrote:

bhd1 - Thanks, I hope I can get 6 months out of it also, or longer if I am lucky.  It does seem fairly easy to tolerate.  I have had had hand and foot with Xeloda and they are just now starting to get somewhat normal, I can tell they are still very dry but not near as red.  I hope I can tolerate this without SE and it works.

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 (doxorubicin)
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Jun 8, 2014 09:48AM Annie62 wrote:

Jeanne- I too have found it hard to find discussion of doxil by patients. I think it is relatively newer and there was a period about a year or so ago where it wasn't being prescribed - there was a shortage. So maybe there are just fewer of us out there by comparison with other treatments.

My hair is growing back. In the first month I did Doxil, I also got 2 infusions of Abraxane (long story). Hair fell out. Right after the Abraxane was stopped, my hair started growing back. I'm so bummed I lost the hair 'for no reason'. Anyway, not sure if Doxil would have made it thin initially or fall out but I think it was the Abraxane in my case. I hope you have hair growth too.

Regarding rashes. I have a slight one the past few days. Mostly where waistbands rub and on my legs. I did shave my legs this week so maybe that did it. I also have been spending time outside with DD and it was hot (softball game and pool). So maybe the heat didn't help. I really want to enjoy the pool this summer but maybe its not in the cards. Anyway i've been mostly wearing skirts to avoid and rubbing from pants on my lower half and I think it helps a bit. 

Hope everyone is doing well today. 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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Jun 9, 2014 11:40AM jeanieb2 wrote:

Annie62  - I did not know there had been a shortage of this drug.  The first time the doctor prescribed it they had to bring it from one of their other offices and when I went last Thursday he increased the dose and they had to go to the other office to get it.  I just thought that no one took it so they did not keep any on hand.  I will have to ask about this.  I did ask if this was not one of the popular drugs and the nurse said it was not a popular one, maybe due to the shortage.  My onco increased the dose because I said it seemed to be easy for me.  I have noticed this time I have that "chemo stupor", that is what I call it anyway, and more tired.  I have also run a low grade temp for about a week now every night, it usually starts late afternoon and all evening.  Tylenol does nothing for it, it is usually around 99.4 and usually does not go much higher than that, just enough that I do not feel well with it.  I know some people do not even notice they have one but I can always tell when it hits.  My markers had gone up 20 points but I figured they would the first one or two treatments, I am hoping they start to trend down when I go on July 3 again.  As for my hair it is growing back, not very long but seems to be getting thicker so I am thinking I will not lose it with Doxil, of course I have only had 2 treatments and the second one was just last Thursday so time will tell.  I know with Taxotere it was after my third treatment I could tell it was really starting to come out. 

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 (doxorubicin)
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Jul 2, 2014 11:01AM Annie62 wrote:

How's everyone doing? I just returned from a week in Puerto Rico. The salt water cleared up the end of my rash. yeah. Continuing to feel good in general. I have some muscle tension type pain in my shoulder but I don't thinks its my bone mets.

it was hot in PR and I dont' know anyone so I started going 'topless' only wearing hats or a scarf to block the sun or for fashion. Felt great. I did by a 'Panama' hat while there (label said made in Columbia!). That is my new go to hat for sunblock.

I hope you guys are feeling good and Doxil is doing a good job.

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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Jul 4, 2014 02:25PM jeanieb2 wrote:

Annie62 - I am so glad to hear you got to go to Puerto Rico.  I am sure you had a great time just getting away.  We went to Minnesota to see my dad, he goes there for the summer to stay in his cabin on the lake so we went to see him for 4 days.  It was so nice to get away.  I felt pretty good most of the time but had a couple of times that I did not feel the best.  I have found that if I do not lay down for a couple of hours in the afternoon I get to feeling nauseated and just not well.  Of course I was afraid I would miss something Smile so I did not lay down until my body forced me to.  I saw the oncologist on July 3 for my 3rd treatment of Doxil.  He said my markers had pretty much stayed the same after 2 treatments, of course I was hoping they would go down a little, so when I got home I went to write down what he told me and they had actually gone down 6 points, which is nothing as I know they can vary from day to day but it made me feel better just knowing they were headed in the right direction.  He wants to do 4 treatments before we scan and then we will decide what to do.  He said if it was stable we would continue with Doxil as I am tolerating it well, well much better than Taxotere.  If it is spreading then we will switch to something else.  I thought of a question while I was getting treatment so I asked the onco nurse if this was a slower acting one and a mild chemo, she said yes to both of them, she said it is not unusual to have 4 treatments before you see some results and it is milder than some, but it is a good chemo, which I was glad to hear all of that.  Overall it was a good appointment so I am thankful for that. 

I have noticed that I get so tired and think I can fall asleep if I just lay my head down and then I go to bed but can not sleep.  With the other chemos I have taken I could sleep well but for some reason this one does not let me sleep very well, any suggestions as to what to do.  I know when I do not sleep well the side effects seem worse and if I do not lay down for an hour or two everyday I get so nauseated even when I take my Zofran.  I am still trying to adjust to this and I keep a journal so I can look back at the month before when something pops up that I do not remember happening, most times I see that it happened the same day as the month before and if something is new I be sure to write it down.  I had a headache last night and did not remember having headaches with it but when I looked back at the last 2 treatments, sure enough I had a headache each time so I have found this to be helpful.  I did end up with an ulcer in the esophagus 2 weeks after the 2nd treatment and did not have that with the 1st treatment but definitely know what to look for if it happens again and then can get started on the medicine they gave me for it.  Has anyone else had problems with this and what did you do to keep from getting one?

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 (doxorubicin)
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Jul 5, 2014 02:47PM Annie62 wrote:

Jeanie - no headaches for me but I have been having trouble sleeping. I feel overtired - exhausted but can't fall asleep. Tonight, if I have some trouble I'm going to try some tylenol pm or melatonin. I haven't had naseau but I have compazine on hand if I do. Maybe your onc can prescribe a different anti-nausea med?

Very interesting about the slow acting nature of doxil. I don't think I knew that. 

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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Jul 7, 2014 11:00AM jeanieb2 wrote:

Annie62 - I hope you got some much needed sleep.  I posted that about not sleeping and of course this time after treatment on Saturday and Sunday I was so tired I laid down and slept off and on for about 4 hours each day and still slept at night.  Maybe it is accumulating in my system I don't know.  I noticed that between my fingers they are very red and sore, kind of like the hand and foot syndrome you get but nothing on the hands and feet, so I may have to call the doctor and get something if it gets any worse, I do not want it to crack but can not figure out why it is that way.  Have you had any trouble with that?

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 (doxorubicin)
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Jul 7, 2014 03:33PM Annie62 wrote:

jeanie - still sleeping  badly. I'm glad you got some good shut-eye!

Re: the hands. Keep them moisturized  so they don't crack and call you doctor. The nurses at my chemo center are firm about calling them if I start to get this. I've been lucky so far. 

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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Jul 8, 2014 06:32PM jeanieb2 wrote:

Annie62 - The sleeping thing did not last Sad, I had a terrible night last night, was tired today so laid down but could not go to sleep, hopefully tonight will be better, if not, I guess that is just the way it goes.  I will call my doctor tomorrow or Thursday, he is there on Thursday and would rather the nurses ask him instead of one of his associates so hopefully I can remember to call on Thursday.  Hope you get some much needed rest soon.

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 (doxorubicin)
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Jul 8, 2014 07:57PM Annie62 wrote:

Aww Jeannie - sorry you can't sleep. Unbelievable how bad it can make us feel. I finally had a good night last night. Hope for another tonight.

ask your onc for an Rx - if not a sleep aide, maybe a muscle relaxant or anti-anxiety med. I've had both at different times and they helped me sleep. If you don't have any tylenol pm type thing for tonight, how about a swig of Benadryl or NyQuil?

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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Jul 9, 2014 12:55PM jeanieb2 wrote:

Annie62 - I have had a prescription for Lunesta but did not like that and sometimes it did not work.  I have tried the Tylenol PM and each time I did I was like a Zombie the next day but I have taken the Benadryl and it seems to work, I had forgotten about that.  I also have a prescription, a low dose, of Xanax which maybe I need to take it every night.  I have noticed the last 3 or 4 nights the bones in my legs just hurt so have taken Tylenol for that, last night I took that and a Xanax and slept pretty good, it could either be that or else I was just so tired from not sleeping the night before.  I may just take the two together for a couple nights and see if it helps and then use the Benadryl sometimes too.  Thanks for reminding me about that.  I swear this chemo brain is not getting any better.  It seems to be getting worse some days.  Have you noticed it or have you been affected by 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 (doxorubicin)
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Jul 13, 2014 01:22PM 007_Kara wrote:

Starting my 4th round and I get it once a month. I am getting this red rash on my back and chest. It hits me on the 3rd week.

Kinda feels like small blisters. - Benedryl not helping. Any ideas?

And the raw mouth feeling and teeth ache too.

Dx 11/7/2011, IDC, 4cm, Stage IV, Grade 2, 2/25 nodes, mets, ER+/PR+, HER2- Radiation Therapy 12/2/2011 Chemotherapy 12/22/2011 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Hormonal Therapy 3/15/2012 Surgery 6/4/2012 Lumpectomy: Right; Lymph node removal: Right, Underarm/Axillary Surgery 6/20/2012 Lumpectomy: Right Radiation Therapy 7/15/2012 Breast, Lymph nodes Chemotherapy 11/28/2012 Halaven (eribulin) Radiation Therapy 1/9/2013 Brain Chemotherapy 4/24/2013 Halaven (eribulin) Hormonal Therapy 9/4/2013 Femara (letrozole) Chemotherapy 1/6/2014 Halaven (eribulin) Chemotherapy 4/29/2014 Doxil (doxorubicin)
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Jul 14, 2014 09:53AM jeanieb2 wrote:

Has anyone had bone pain on this chemo?  I have had lots of bone and leg pain, or legs aching quite a bit for several days after treatment.  Also, I have noticed my skin is discoloring in places, around the waist band, under my left arm, by the implant, knees, it is just strange to see it doing this.  I can only think it is from this drug because there is no other reason for it to be getting darker.

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 (doxorubicin)
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Aug 4, 2014 09:07AM Annie62 wrote:

Bumping this thread to see how everyone is doing. Kara - I missed your question from 7/13. The chemo nurses always tell me to get in touch with them if I get mouth sores. There is a prescription mouthwash they can give you that helps heal and reduces pain. They are concerned about nutrition if you have trouble eating. I've had minor mouth irritation that I treat with baking soda rinses. That has worked so far. As for the teeth aching - I do get aches in some of my teeth and I figured I was grinding in my sleep. The dentist sees nothing wrong but boy is it annoying. Don't know if its related to the meds or not. 

Jeanie-I had some minor discoloration where my rash was - and I did get it under my arms at one point. My dosage was reduced and I haven't had a problem since. 

I've been doing well. I have some fatigue and this week I've had some stomach upset - pretty minor but annoying. Waiting on tumor markers and hoping they are still going down. If they are we are pushing my scan back another month (at least). If not I'll probably have one sooner. 

I've been enjoying my summer and have a bunch of free time with my daughter at camp right now. Hope everyone is doing well and Doxil is taking care of business!

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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Aug 4, 2014 03:31PM jeanieb2 wrote:

Annie62 - My markers are not going down at all since I started this, in fact they have stayed about the same.  I have had 3 doses and went last Thursday, July 31 for my 4th but the doctor put it off a week.  He did not like the looks of the skin issue, the red, sore and peeling, they said it was very dry so they prescribed an ointment to put on it 2 or 3 times a day, it has helped.  I had it bad between my fingers also and it has helped with that.  I will go this Thursday to see him again and I am pretty sure he will give me the next round but will cut the dose back.  I told him the markers were not going down, he asked if my breathing was doing OK, as I had cancerous fluid build up in the lungs twice and had them drained, I said the breathing was fine, so he said if that is good we will do this 4th treatment and then do scans next month to see if it is keeping it stable.  If it is I am sure I will stay on this one, it is so easy compared to the last one I took.  If it has progressed we will move on to another chemo.  I hope everyone is doing well with this one and that it is working for you all with no or very few side effects.

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 (doxorubicin)
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Aug 4, 2014 04:39PM Annie62 wrote:

Jeanie - Sorry to hear the skin issues have been so bad. My onc reduced the dosage and when I had a good month she increased in but not to the original level. Skin still okay. So maybe you should speak to your onc about reducing a bit no matter what.

What ointment were you prescribed? Just curious.

Keeping my fingers crossed that the doxil is working 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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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 10/28/1992 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 (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 10/28/1992 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 (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 10/28/1992 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 (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 10/28/1992 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 (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 10/28/1992 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 (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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