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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Sep 7, 2014 11:19PM SyrMom wrote:

Thanks everyone ... will be in the chair tomorrow!Shocked

Dx 9/22/2010, IDC, 2cm, Stage IV, Grade 2, 2/2 nodes, mets, ER+/PR+, HER2-
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Sep 7, 2014 11:47PM 33skidoo wrote:

Bone pain has definitely ramped up a notch or two.

Dx 8/2007, IDC, 1cm, Stage IV, Grade 3, 1/1 nodes, mets, ER+/PR-, HER2-
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Sep 8, 2014 11:44AM jeanieb2 wrote:

33skidoo - Thanks, I thought I was just imagining some of it, I am not glad to hear you have it but glad that someone else confirms it.  Are you able to take anything for it or do you just wait it out?  I do take Tylenol like I said and sometimes I think it helps and others I do not.  I do not know whether to say something to onco and get something stronger, I really, really do not want to take something that makes you groggy but sometimes in the middle of the night it would not matter.  Just wondering about you opinion on this.

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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Sep 8, 2014 01:55PM 33skidoo wrote:

I have very extensive bone mets and had a 7-level spinal fusion to reconstruct my back.  I've also had several rounds of radiation to areas in my hip and pelvis that had large mets.  I find that some meds seem to aggravate the bone mets, although I always have some residual pain in those areas regardless of the treatment I am on.  I take several pain meds.  My usual plan of attack is to take 30 mg of extended release morphine sulfate 3x a day, 10 mg of flexaril (a muscle relaxant) 3x a day, an nsaid (I like naproxen sodium) 2x a day and 10 mg of oxycodone as needed for breakthru pain.  Obviously, that's a lot of meds.  Doctors are shocked that I take so little, given the state of my bones.  The narcotic effect disappeared completely when I started taking them regularly.  I think that if you are taking the right dose the narcotic effect does not occur, or at least is considerably lessened.  I have not had any tendency to want to increase the dosage.  

Dx 8/2007, IDC, 1cm, Stage IV, Grade 3, 1/1 nodes, mets, ER+/PR-, HER2-
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Sep 8, 2014 04:17PM SyrMom wrote:

Hi everyone ... completed #1 infusion with no incident.  It was a long one as that's how they do it the first time.  Only symptom I had towards the end was a "gasy"  lower intestine, but that could be from anything, I imagine.  So now I wait to see if the anti nausea meds hold.  

My lower extremities are a mess with edema, but I can't take any diuretics because my BP already runs low & I get weak & dizzy.  

Dx 9/22/2010, IDC, 2cm, Stage IV, Grade 2, 2/2 nodes, mets, ER+/PR+, HER2-
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Sep 8, 2014 06:35PM 33skidoo wrote:

If you haven't tried them, compression socks can help with edema.  Such a b*tch to put them on, though.

Dx 8/2007, IDC, 1cm, Stage IV, Grade 3, 1/1 nodes, mets, ER+/PR-, HER2-
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Sep 10, 2014 06:42AM Annie62 wrote:

Syrmom- Pleased to hear the infusion went well. I'm sure you'll be glad when its half the time in the future. Regarding the gas, as you say it could be anything but I have had more gas (lower and upper) with Doxil. It was more annoying than anything. Gas-X, peppermint tea, short walks and most recently pro-biotics seems to help. If it disappears after my switch I'll let you know.

So my new treatment is Carboplatin and VP-16 (aka etoposide). First time on a platinum drug and well, I had never hear of VP-16. Both have hair thinning which ticks me off. Just got my hair back. Had my first infusion yesterday. Went fine. Onc looking into trials at my request. I don't appear to be eligible for anything current as I'm taxol allergic, non-responsive to anti-hormonals but will be disqualified because I am weekly er/pr+, and I'm her2- so that rules out the vast majority. Still hopefully I'll get some time out of this and I have a few options I haven't tried yet and a few that I haven't done in years so can try them again. Gotta admit  I'm getting nervous. My progession wasn't slight as I'd hoped.

I'll check in occasionally to say hi, but starting a thread on my weird combo. Hopefully I'll find some other who know about it.

Hugs to all, 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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Sep 10, 2014 09:12AM SyrMom wrote:

skidoo - Yes, I thought about the compression stockings, but decided to wait for the cold weather.  Don't want to deal with it with the warmer weather, ugh!
Annie - gas X worked great, so will keep that around for future.  Did you have any Big D or constipation issues?  I think I may be headed for my first bout with constipation - don't usually have this problem, but will see what happens.  I wish you luck on your new tx plan; I understand how nerve racking it can be when they don't work - as I said before, I was 18 months of NOTHING working, it was awful.  That's when I ended up with the liver mets!!  I "only had" bone mets previously, so that was real upsetting. That's also when I got my first introduction to IV chemo!  Luckily, weekly taxol worked for nearly a year, which gave my hysteria a rest!

Dx 9/22/2010, IDC, 2cm, Stage IV, Grade 2, 2/2 nodes, mets, ER+/PR+, HER2-
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Sep 10, 2014 09:24AM Annie62 wrote:

Syrmom- I only had occasional D or constipation. D was annoying and I would lay down sometimes but I was never dehyrdrated and it was never more than 1-2X a day for a day or two. Constipation I occasionally had and I found that Miralax worked best. I used the powder and you can't taste it in a drink. When I had real problems with it from another chemo (can't remember which), Miralax worked well. Good luck!

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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Sep 10, 2014 09:31AM SyrMom wrote:

Thank you, Annie.Smile

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

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