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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Jan 19, 2015 08:22PM tcallegan wrote:

Hello all,

I have had three doxil treatments. I have tolerated them all very well. This last on hit me hard....extreme tiredness and lots of right shoulder blade pain for the week following treatment. Pain went away and constipation set in. Mirilax has helped.

Has anyone had abdominal bloating following doxil? This started yesterday and I haven't had it with the other treatments.

Thanks for your help!

Tammy

Dx 11/2007, IDC, Stage IIA, 2/7 nodes, ER+/PR+, HER2+ Dx 2/2013, Stage IV, mets, ER+/PR+, HER2+ Chemotherapy 3/1/2013 Ixempra (ixabepilone), Xeloda (capecitabine) Chemotherapy 7/1/2013 Carboplatin (Paraplatin), Gemzar (gemcitabine)
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Apr 23, 2015 12:58AM dawnzdreams wrote:

Hello ladies! I am on my second dose and about due for my third dose of Doxil. I am sorry to see that no one has posted here since about mid January. I am hoping my post will bump on this thread and keep it going.

Side Effects:

The first dose was the worst for me. Had a fever every night for the first 2 weeks. Mainly around 100.4, but the highest was 102. I also had a lot of burning in my throat, Esophagus, and stomach for the first 3 weeks after my first dose only. I do get nausea, mainly in the morning, but Zofran helps really well on most occasions. This seems like a VERY easy chemo as far as SEs so far. No hair loss, but now, 2.5 weeks after my second dose, I find more hair in the brush. So, it might be thinning a bit. I am having a pretty darn good amount of bone pain lately, but could be caused by the bone mets.

Tumor Markers:

Mine were 200 at the first dose and 404 at the second dose, so that worries me very bad, since I just started Doxil after Femara completely failed me and actually worked more like fertilizer! I have had lung mets and "some" bone mets, but after Femera suddenly my liver was completely covered in liver mets (both poles, multiple, up to 2.5 cm) and my bone mets spread like wild fire...my WHOLE spine with 4 very bad spots, two ribs, my collar bone, both hips, both upper leg bones, and now I have to have my left hip replaced this Friday!! Almost had to have a double hip replacement, but they decided the left was ready to break now and we could watch the right. Because of the leg bone and the cancer in the joint, it will be a complete hip replacement, with the cup to replace joint and an extra long rod in the leg, which the surgeon said will be the longest he has ever used. He also said I would have to have the big cut and also through the muscle. I am scared to death. He said there is so much cancer in that whole region that he could have troubles when he gets in there, but also that I need to have it right now, because if we wait until it breaks that it could be very hard to fix. He also said now is the time to make the move, because I am in the middle of the chemo when my counts should be higher and we do not want to take a chance and have it break right around my chemo day. <sigh>

I am very worried about all of these mets. Anyone have them to the lungs, bones, and liver? I have 14 tumors in my lungs, all around 2 cm each. My L4 broke last September, but now they are worried my T10 and T11 could break and the T2 is pretty bad too, but my whole spine from my neck to my butt lite up on the bone and appeared "mottled" CT. A MRI 3 weeks later (after starting first dose of Doxil) showed it had also spread into my upper leg bones, became worse in my hips, and when he showed me the MRI he stated the "whole region" had grown and it seems like even my pelvic bones were lite up. It just seems like a bad dream that I cannot escape. Just along for the ride. He said the longer rod in the leg causes extra risk for pulmonary embolism and cardiac troubles. <sigh> Heck, lol, I was ready to have cardiac troubles before the surgery after he told me all this stuff. lol I am trying to find a thread with mets to liver, lungs, and bones, but cannot. =( The whole liver has me frightened, and with my tumor markers going up again after the big fail by femara just makes the fear worse.....but, since a few of you have mention that your TMs went up at first and then started dropping and also that this is a slow working chemo...I do feel a little better. Now, because of this hip replacement, my chemo will be held off for 3 weeks after my surgery. I do worry that will allow the cancer a chance to become resistant to the Doxil. The positive about the hip replacement is that they will take a number of samples. This will allow us to see if the receptors have changed and also make sure it is still breast cancer in the bones, since my grandmother died at 34 from bone cancer. Seems funny that all my tumors stayed stable on femara, but I had this horrible spread in my bones and the liver take over. Anyone else have a massive progression after a failing treatment? I did have a flair in a brain MRI back in 2013 and I am really scared to have them recheck my brain. Might not be anything left but tumor. LOL

Help give me some peace of mind. All of this has finally pushed me over the edge. I think I am ready for some Valium now.

Big big (((hugs))) to all of you. Sorry we had to meet here.

Dawn

PS - Due to have my first grand baby the end of July. I have 4 children (24/g - pregnant, 21/b, 15/g, and my baby girl who just turned 11). My husband passed away 10 years ago, so I worry about my children the most. I have a small family and no great solutions for them. =( I am worried all these liver mets will wipe me out if another treatment fails. My dog sticks right to me lately. Not sure what that means. <sigh> This stage IV is very nerve racking stuff!

Dx 10/20/2006, 5cm, Grade 3, 0/3 nodes, mets, ER+/PR+, HER2- Dx 8/5/2013, IDC, Stage IV, Grade 3, 0/3 nodes, ER+/PR+, HER2-
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Apr 23, 2015 01:01AM dawnzdreams wrote:

PS - homemade milkshakes with a little extra milk really helped me with the throat, esophagus and stomach burning. So did any ice cream. Spicy foods, even one slice of pizza made it horrible, but I did only have it the first 3 weeks. Also no sign of foot, hand problems or mouth sores.

Dx 10/20/2006, 5cm, Grade 3, 0/3 nodes, mets, ER+/PR+, HER2- Dx 8/5/2013, IDC, Stage IV, Grade 3, 0/3 nodes, ER+/PR+, HER2-
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Apr 23, 2015 08:44AM Woodylb wrote:

Dawnzdreams,

I am so sorry you are going through all this alone. There is a thread for doxil users just put in the topic search doxil it will get to the thread.

The following is the liver mets thread :

https://community.breastcancer.org/forum/8/topic/8...

You will also find bone mets and lung mets , they are all under stage IV metastatic cancer topics.

On all threads you will find a lot of support, wonderful ladies, and true worriors. I hope this helped. Do not worry much about the TMs rising when you start a new protocol it usually does in some of the treatments and then it will start dropping.

Wishing you a lot of luck on doxil or anyther treatment which will work for you.

God bless you and my prayers are with you.

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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