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 23, 2013 04:58AM

Posted on: Oct 23, 2013 04:58AM

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 16, 2014 07:44AM SyrMom wrote:

 I had my second infusion of doxil & have been dealing with the side effects (nausea, big C, fatigue) - seems I get one good week out of the month (ugh); now hand/foot syndrome despite trying methods to prevent and/or minimize it. Have had lots of experience dealing with it when on Xeloda - it was h*ll.  Getting scanned Monday to see if the doxil is doing anything positive; I have a feeling it's not.  I personally think it's too early to scan as I only had my second infusion on the 6th.  On the other hand, mo doesn't want to leave me on something that's not working & possibly leading to cardiac complications. If this hand/foot (mainly foot) gets any worse I won't be able to stand it anyway.  Just hope the liver hasn't gone crazy since August making new mets.

skidoo, do you mind my asking how many liver mets you have?

Dx 9/22/2010, IDC, 2cm, Stage IV, Grade 2, 2/2 nodes, mets, ER+/PR+, HER2-
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Oct 17, 2014 02:23PM 33skidoo wrote:

Jeanie, my doc said he has no idea why markers go up but the patient's condition improved.  Just part of the "art" of treatment, I suppose.  Last treatment my markers went up by another 100 points.  I suspect there may be a treatment change in the cards for me.

Dx 8/2007, IDC, 1cm, Stage IV, Grade 3, 1/1 nodes, mets, ER+/PR-, HER2-
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Oct 27, 2014 06:47AM SyrMom wrote:

I'm off doxil, for at least 3 weeks to see if the side effects calm down.  Hand/foot awful, can barely walk and the hands are very painful to use; symptoms keep getting worse, instead of better.  Have now developed mouth sores to the point of not being able to eat solid foods and liquids are painful.  I've only had 2 infusions, not fun!

Dx 9/22/2010, IDC, 2cm, Stage IV, Grade 2, 2/2 nodes, mets, ER+/PR+, HER2-
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Oct 27, 2014 07:17AM Woodylb wrote:

Syrmom, 

I am so sorry for this whole ordeal, it is terrible. I hope stopping doxil will help subside your pain and mouth sores. (HUGS). 

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- Surgery 12/15/2010 Lumpectomy: Right; Lymph node removal: Right, Sentinel, Underarm/Axillary Hormonal Therapy 9/1/2011 Femara (letrozole) Radiation Therapy 9/1/2011 Breast, Lymph nodes Dx 12/10/2013, ILC, Stage IV, Grade 2, ER+/PR-, HER2- Chemotherapy 1/6/2014 Carboplatin (Paraplatin), Gemzar (gemcitabine), Taxol (paclitaxel) Hormonal Therapy 5/28/2014 Aromasin (exemestane) Dx 10/15/2014, HER2+ Targeted Therapy 11/10/2014 Herceptin (trastuzumab) Targeted Therapy 11/10/2014 Perjeta (pertuzumab) Chemotherapy 11/11/2014 Taxol (paclitaxel)
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Oct 28, 2014 03:19AM SyrMom wrote:


Woody, thanks.  I was told this morning it will take a long time before I feel better because doxil hangs out in the fat cells.  Glad I'm not overweight!  Regardless, this is the worse I've ever felt & my patience is wearing thin.

Wishing you good luck with Xeloda.  I've heard some patients have been on it successfully for years and have had good results with liver mets.

Take care ...  

Dx 9/22/2010, IDC, 2cm, Stage IV, Grade 2, 2/2 nodes, mets, ER+/PR+, HER2-
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Oct 28, 2014 04:39AM Woodylb wrote:

Syrmom, 

I am glad you still have your sense of humour with all your pain :))) it would have had a party on me since i carry a fair amount of fat. But if takes long to get better then what do they intend to do for you to be treated meanwhile? Wihout effecting your body this way? And if not how long before will they restart ? 

As for me as it seems they are stopping xeloda completely before they find out if it is working or not. So i guess wednesday will be my last pill. As it appears from my genomic testing i am highly her2 positive not a little or borderline. So they want to start with full force on herceptin+Perjeta+paclitaxel , it is said to improve survival in her2. So i do not know much more than you do. But at least for onece they all agree on the same regimen. 

I hope you are a fast healer and that your body is strong enough to heal itself very quickly. You are in my prayers always. 

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- Surgery 12/15/2010 Lumpectomy: Right; Lymph node removal: Right, Sentinel, Underarm/Axillary Hormonal Therapy 9/1/2011 Femara (letrozole) Radiation Therapy 9/1/2011 Breast, Lymph nodes Dx 12/10/2013, ILC, Stage IV, Grade 2, ER+/PR-, HER2- Chemotherapy 1/6/2014 Carboplatin (Paraplatin), Gemzar (gemcitabine), Taxol (paclitaxel) Hormonal Therapy 5/28/2014 Aromasin (exemestane) Dx 10/15/2014, HER2+ Targeted Therapy 11/10/2014 Herceptin (trastuzumab) Targeted Therapy 11/10/2014 Perjeta (pertuzumab) Chemotherapy 11/11/2014 Taxol (paclitaxel)
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Oct 29, 2014 03:19AM SyrMom wrote:

Woody, see the mo in 2 weeks & will know more about what to expect.  One thing I do know is I cannot tolerate this again, it's the worse!  I'm adamant about not being sick around the holidays as my one daughter will be her for over a week & I don't want that spent with me in bed or feeling miserable.

Good luck with your upcoming protocol, sounds like you're on the right path.  Keep us posted.

 


 

Dx 9/22/2010, IDC, 2cm, Stage IV, Grade 2, 2/2 nodes, mets, ER+/PR+, HER2-
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Oct 29, 2014 06:01AM Woodylb wrote:

Syrmom, 

I agree with you , to be able to spend the holidays with our loved ones is more important than anything else. I hope by then your SEs would have calmed down. Keep me posted. ((HUGS)). 

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- Surgery 12/15/2010 Lumpectomy: Right; Lymph node removal: Right, Sentinel, Underarm/Axillary Hormonal Therapy 9/1/2011 Femara (letrozole) Radiation Therapy 9/1/2011 Breast, Lymph nodes Dx 12/10/2013, ILC, Stage IV, Grade 2, ER+/PR-, HER2- Chemotherapy 1/6/2014 Carboplatin (Paraplatin), Gemzar (gemcitabine), Taxol (paclitaxel) Hormonal Therapy 5/28/2014 Aromasin (exemestane) Dx 10/15/2014, HER2+ Targeted Therapy 11/10/2014 Herceptin (trastuzumab) Targeted Therapy 11/10/2014 Perjeta (pertuzumab) Chemotherapy 11/11/2014 Taxol (paclitaxel)
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Oct 31, 2014 02:30AM NJoy wrote:

Hi Ladies...newly diagnosed snd starting xeloda probably this Saturday....waiting for it to be delivered....anticipating SE but trying not to let that get into my head too much as Woodylb encourages me not to do....I got a cream for the hand/foot that has Burdick root in it so should I need it I will let you know how that worked.....Aloe also has been recommended. ....  my liver mets are multiple through out so I am praying that this med lessens the burden some ....  I am omly in this for two weeks now so I still feel numb sometimes. ... so overwhelming if I don't keep my mind in check and it just runs continuously.... anyway blessing to all of you and I wil check back on this thread.... ^i^

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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Oct 31, 2014 07:42AM SyrMom wrote:

Njoy, good luck on Xeloda; many patients report very favorable results.  You might not get the hand/foot, but I'd encourage you to do everything you can to divert it -  lotioning, keeping hands/feet cool, no hot water on them, etc.  As with other chemos, the side effects are cumulative.  If you do have a problem, they can reduce your dose and/or go one week on/off, instead of two.

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

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