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 09:58AM

Posted on: Oct 22, 2013 09:58AM

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 06:13AM - edited May 30, 2014 06:16AM 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 06:17AM 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 09:06AM 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 (liposomal doxorubicin)
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May 31, 2014 11:50AM 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 03:12PM 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 (liposomal doxorubicin)
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Jun 8, 2014 07:48AM 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 09:40AM 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 (liposomal doxorubicin)
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Jul 2, 2014 09:01AM 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 12:25PM 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 (liposomal doxorubicin)
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Jul 5, 2014 12:47PM 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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