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 10:58AM

Posted on: Oct 22, 2013 10:58AM

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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Oct 30, 2014 04:02PM Woodylb wrote:

Njoy,

You need to think that this will work , and it will work. No one knows what is next, so you do not think what if? It would really effect your general health and worry so much till exhaustion. You are in my prayers for a new begining with xeloda. ((HUGS)).

Surgery 12/14/2010 Lumpectomy: Right; Lymph node removal: Right, Sentinel, Underarm/Axillary Dx 12/15/2010, ILC, <1cm, Stage IIIB, Grade 2, 22/23 nodes, ER+/PR+, HER2- Dx 12/15/2010, ILC, <1cm, Stage IIIB, Grade 1, 21/23 nodes, ER+/PR+, HER2- Hormonal Therapy 8/31/2011 Femara (letrozole) Radiation Therapy 8/31/2011 Breast, Lymph nodes Dx 12/10/2013, ILC, Stage IV, Grade 2, ER+/PR-, HER2- Chemotherapy 1/5/2014 Carboplatin (Paraplatin), Gemzar (gemcitabine), Taxol (paclitaxel) Hormonal Therapy 5/27/2014 Aromasin (exemestane) Dx 10/15/2014, HER2+ Targeted Therapy 11/9/2014 Herceptin (trastuzumab) Targeted Therapy 11/9/2014 Perjeta (pertuzumab) Chemotherapy 11/10/2014 Taxol (paclitaxel)
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Oct 31, 2014 04:40PM NJoy wrote:

Dear SyrMom....thanks for your post.....sorry you're going through such a rough time ...  I know the mouth sores can be hard to cope with, a friend of mine has them from lupus.  Have any of the SEs calmed down from stopping the doxil?  Pray you feel better and can enjoy your daughter's company for the holidays ....  it's a while off yet so I feel like you have some time to restore yourself some and be able to enjoy your holidays. .... thats my prayer for you...

I start the xeloda tomorrow.... I am on 3900 mg per day/ 14/7, which sounded like a whopper of a dose and made me nervous but the pharmacist said that for my height (very tall) and weight (average) it's moderate to high. ?? I have taken to heart all your posts about trying to divert the hand/foot stufff without making myself stress out over it too much....so as I said I have utter cream, burdock root cream and Aloe on hand if needed.  Today is the last day that I will have my little portable heater in my office warming my feet as I work  ....  hearing clearly from you that that would be a no-no!!  Oh well, I'll get over it I guess! 

And to my dear Woodylb .....  always praying for you too my friendl! ....   Thanks for always reminding me to keep my head positive and not get to ahead of myself ....  stay in the here and now and allow things to unfold as they may ....  its a tall order on some days as you all well know,  but I know that for the long haul it is the only way to keep centered and probably sane ..   I feel strong that this drug will work for me and get rid of some of those tumors or at least bring them down in quantity.  I have been juicing alot too and I swear by the healing powers of carrot juice ... for now I have put it in God's hands and I trust that he will take from me what I cannot handle .. 

Blessings to you both ....  adding you to a powerful prayer list this Sunday so please feel the energy of those prayers as you continue to heal and feel stronger ....  Be well ....   Nadine

Dx 7/2/2012, ILC, 6cm+, Stage IIIA, Grade 2, 1/2 nodes, ER+/PR+, HER2- Dx 10/15/2014, ILC, Stage IV, mets, ER+/PR+, HER2-
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Nov 1, 2014 02:26AM Woodylb wrote:

Good luck Nadine on xeloda i hope it brings you to stable and more and for a long time. Even with some bumps along the way if it is effective then it is all worth it. 

Syrmom, i hope ypu are feeling better and that you are enjoying your daughter's company for the holidays. 

My prayers are with you both and may the power of prayers help us in these trying times and help us to get to a safe haven. 

Surgery 12/14/2010 Lumpectomy: Right; Lymph node removal: Right, Sentinel, Underarm/Axillary Dx 12/15/2010, ILC, <1cm, Stage IIIB, Grade 2, 22/23 nodes, ER+/PR+, HER2- Dx 12/15/2010, ILC, <1cm, Stage IIIB, Grade 1, 21/23 nodes, ER+/PR+, HER2- Hormonal Therapy 8/31/2011 Femara (letrozole) Radiation Therapy 8/31/2011 Breast, Lymph nodes Dx 12/10/2013, ILC, Stage IV, Grade 2, ER+/PR-, HER2- Chemotherapy 1/5/2014 Carboplatin (Paraplatin), Gemzar (gemcitabine), Taxol (paclitaxel) Hormonal Therapy 5/27/2014 Aromasin (exemestane) Dx 10/15/2014, HER2+ Targeted Therapy 11/9/2014 Herceptin (trastuzumab) Targeted Therapy 11/9/2014 Perjeta (pertuzumab) Chemotherapy 11/10/2014 Taxol (paclitaxel)
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Nov 1, 2014 08:14AM SyrMom wrote:

Thanks for all your good wishes.  I'm a bit better - can at least eat solids now and walk a bit easier, thank goodness!  Still have chemo rashes and my hands are still painful.  Somewhat worried about what will come next with all my sensitivities & the holidays around the corner.  Will know more on the 10th when I see onc for follow up.

Take care ...

Dx 9/22/2010, IDC, 2cm, Stage IV, Grade 2, 2/2 nodes, mets, ER+/PR+, HER2-
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Nov 1, 2014 01:57PM NJoy wrote:

Hi Sermon....a bit better is good too .... happy to hear that ... saw a post last nite and thought of you.... a sister on this site talking about mouth sores and how she used sage tea or sage honey tea which was very effective ....  sometimes she drank it and other times used it as a mouth wash ......brought her relief ... something easy to try maybe...  be well

Dx 7/2/2012, ILC, 6cm+, Stage IIIA, Grade 2, 1/2 nodes, ER+/PR+, HER2- Dx 10/15/2014, ILC, Stage IV, mets, ER+/PR+, HER2-
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Nov 1, 2014 01:58PM NJoy wrote:

Sorry...auto correct changed your name to sermon ... so sorry

Dx 7/2/2012, ILC, 6cm+, Stage IIIA, Grade 2, 1/2 nodes, ER+/PR+, HER2- Dx 10/15/2014, ILC, Stage IV, mets, ER+/PR+, HER2-
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Nov 1, 2014 02:00PM NJoy wrote:

Thanks Woodylb ... ((((hugs...xoxo)))) God Bless

Dx 7/2/2012, ILC, 6cm+, Stage IIIA, Grade 2, 1/2 nodes, ER+/PR+, HER2- Dx 10/15/2014, ILC, Stage IV, mets, ER+/PR+, HER2-
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Nov 19, 2014 10:34PM jnh wrote:

Hi ladies, I may be at a crossroads and it may be time to change meds...need your experience and your input...please.

Here's the history:

I had Stage II BC in 2002. Was diagnosed Stage IV nine years later with mets to sternum and lungs.

Xeloda worked for approx. a year to reduce tumors greatly, then cancer growth

Tamoxifen worked for 10 mo or so and got me to NED, then had some cancer activity.

Afinitor and Aromasin combo worked for approx 15 mo and got me to NED again. My tumor markers kept rising but scans were still clear. So my onc and I (after much discussion) decided to leave me on Afinitor and Aromasin because it may still be working and just add Faslodex to the mix. I've had 5 Faslodex injections total (3 months on Faslodex) Now, my tumor markers are rising again. They rose a lot this last month...almost 30 points. I've heard Faslodex can take a long time before it lowers TMs. My onc even said it can take a while. He said I should do 2 more injections and then a scan. If we see cancer growth, he feels I should do IV chemo (most likely Doxil) next. I've pushed off IV chemo for 3 1/2 years now and really am not anxious to start it. I did all that with my Stage II cancer long ago. But, I know eventually, it is probably what I will have to do.

I've also heard of ladies who have tried all the hormonals first before switching to IV chemo. I've only been on Tamoxifen, Aromasin, and Faslodex. My onc feels like if this current one isn't working, it probably is time to switch to a chemo.

What is your experience? Have any of you had success with Faslodex and how long before it worked? I don't want to give up on a treatment too early. Anyone had Faslodex NOT work? How long did you try? Did any of you go through MORE hormonals before going to IV chemo? Or, do you think it is better to switch gears if the cancer is growing and hit it with chemo for a while? Any of your experiences will help me.

Also, anyone on Doxil? What do you think? What is it like?

I'm hoping and praying that with a little extra time the Faslodex will work, but would love to hear your thoughts just in case!

Thank you all so much!

Julie

Julie Dx 10/24/2002, IDC, 2cm, Stage IIB, 3/14 nodes, ER-/PR-, HER2- Surgery 11/13/2002 Lymph node removal: Left, Underarm/Axillary; Mastectomy: Left, Right; Reconstruction (left); Reconstruction (right) Chemotherapy 12/22/2002 Adriamycin (doxorubicin), Cytoxan (cyclophosphamide), Taxotere (docetaxel) Dx 7/7/2011, IDC, 3cm, Stage IV, metastasized to bone/liver/lungs, mets Chemotherapy 7/15/2011 Xeloda (capecitabine) Hormonal Therapy 6/6/2012 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Hormonal Therapy 6/6/2013 Aromasin (exemestane) Targeted Therapy 6/6/2013 Afinitor (everolimus) Hormonal Therapy 4/28/2015 Femara (letrozole) Targeted Therapy 4/29/2015 Ibrance (palbociclib) Targeted Therapy 11/9/2015 Kadcyla (T-DM1, ado-trastuzumab) Chemotherapy 5/31/2019 Xeloda (capecitabine) Targeted Therapy 5/31/2019 Tykerb (lapatinib) Hormonal Therapy 6/1/2019 Arimidex (anastrozole) Targeted Therapy 1/28/2020 Enhertu (fam-trastuzumab deruxtecan-nxki)
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Nov 20, 2014 08:43AM SyrMom wrote:

inh, welcome.  Well, we are all very different in what will and will not work for us and what we can and cannot tolerate.  I was stage iv from the get go.  Started with femara, worked for 18 mo.  Then on to faslodex, didn't work at all; then on to Xeloda, didn't work at all (but gave me hand/foot syndrome and ruined a whole summer), so after 18 mo of progression & nothing working, I was real afraid.  On to my first IV chemo, taxol, and I got 11 months out of it.  Began doxil in Sept., by my second infusion I had a toxic reaction, which I'm still recovering from.  EXTREME hand/foot syndrome (skin still coming off), mouth filled with sores & I was unable to eat for 10 days, also developed dysphagia, which is clearing up nicely.  I had sucked on ice during the infusion and iced my hands/feet, kept them lotioned, did everything possible to avoid what happened, but my body said NO!  Now I'm waiting for the pain in my skin to calm down enough to begin another chemo - probably adriamycin, the sister to doxil. I understand it's one of the toughest ones as well.  Real concerned about being sick around the holidays. The big difference between Adriamycin and doxil is that doxil sits in the fat cells  & takes a while to get out of your system; this is why I'm still recovering.  Both can cause cardiomyopathy, so the heart is watched closely.  No heart issues yet, that I know of.  I'm real frightened because have not been off tx for this long since 2010.

I've known others that do very well on doxil, so you never know until you try!  I realize it was a long time ago, but do you remember anything that helped you while on Adriamycin?

Take care. 

Dx 9/22/2010, IDC, 2cm, Stage IV, Grade 2, 2/2 nodes, mets, ER+/PR+, HER2-
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Nov 20, 2014 11:45AM Woodylb wrote:

Syrmom,

I had adremaycin at mt first Dx 4 cycles my side effects were not many , hair loss of course, after one week only, water retention, loss of tastes mostly the salty. I took slow walks everyday, drank a lot i mean a lot of liquid soups, juices but no citrus, i did not eat any raw vegetable during this treatment it was all cooked. They gave dexametazone in injection and for two days after. I kept all my body moist at all times . It dries the skin a lot. The onc kept check on my heart. It generally went very well till docetaxel. Also i had 5 shots of neupogen three days after each session. I was getting it every 21 days . Weight gain. I had no problem with nausea except a little nor vomiting. For the little nausea i used fresh ginger grind it on the food processor , i put in boiling water turn it off , let it sit for a while a sqeeze of lemon and honey and drank tons of it. It keps my joint pain in line. I hope this helps you and i hope it will be easy on you. Take care.

Surgery 12/14/2010 Lumpectomy: Right; Lymph node removal: Right, Sentinel, Underarm/Axillary Dx 12/15/2010, ILC, <1cm, Stage IIIB, Grade 2, 22/23 nodes, ER+/PR+, HER2- Dx 12/15/2010, ILC, <1cm, Stage IIIB, Grade 1, 21/23 nodes, ER+/PR+, HER2- Hormonal Therapy 8/31/2011 Femara (letrozole) Radiation Therapy 8/31/2011 Breast, Lymph nodes Dx 12/10/2013, ILC, Stage IV, Grade 2, ER+/PR-, HER2- Chemotherapy 1/5/2014 Carboplatin (Paraplatin), Gemzar (gemcitabine), Taxol (paclitaxel) Hormonal Therapy 5/27/2014 Aromasin (exemestane) Dx 10/15/2014, HER2+ Targeted Therapy 11/9/2014 Herceptin (trastuzumab) Targeted Therapy 11/9/2014 Perjeta (pertuzumab) Chemotherapy 11/10/2014 Taxol (paclitaxel)

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