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Topic: peritoneal carcinomatosis

Forum: Stage IV and Metastatic Breast Cancer ONLY —

A place for those managing the ups & downs of a Stage IV/metastatic breast cancer diagnosis. Please respect that this forum is for Stage IV members only. There is a separate forum For Family and Caregivers of People with a STAGE IV Diagnosis.

Posted on: Mar 4, 2016 07:14PM

evelym wrote:

I am looking for others who have peritoneal carcinomatosis who would like to share their stories and treatments.

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Mar 4, 2016 07:34PM Longtermsurvivor wrote:

Hi Evelym,

I have peritoneal mets from ductal breast cancer along with ascites. Was diagnosed last June, but symptomatic for over a year.

My treatment history is unique, so I don't share it here or put it in my signature.

What about you, Evelym?

Happy to meet you and looking forward to learning more from each other, Stephanie

Grateful to be here. Advanced breast cancer for 25 years, engage holistic approaches. Am dealing with ascites and many mets. Am on hospice.
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Mar 4, 2016 08:58PM evelym wrote:

Stephanie, Thank you for your response. You have been dealing with breast cancer too for so long. I was initially diagnosed with ductal breast cancer in 1992; in remission until 2007 and had recurrence in the ovaries and peritoneum. Had ovaries removed in 2009; had several small bowel obstructions and large bowel obstruction in 2011; Had chemo followed by faslodex and then affinitor and aromasin; Scans have previously not shown anything until last one; Trying to decide now whether to go on a trial drug or IV chemo or get a second opinion. Don't know what to do. Haven't had much ascites so far but am becoming more uncomfortable and expect to have another bowel obstruction before long. Hope you are comfortable with hospice. Think they are a wonderful organization. Wish you the best. Evelyn

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Mar 4, 2016 09:09PM Hummingbird4 wrote:

Hi Evelym,

I also have peritoneal carcinomatosis from ILC. I am currently on Taxol, and so far after 6 infusions - I am getting relief from the very painful, very swollen belly. The swelling has gone down considerably and I am much more comfortable. I also have extensive bowel tumor infiltration and I had terrible symptoms from that in Jan. into Feb., but I am feeling better now. I'm hoping the Taxol continues to work!

I don't think there are many ladies here with belly mets. Stephanie has ductal, I have lobular cancer. How about you? I agree - I would also like to learn more from anyone in this situation.

Wishing us all comfortable days.

Dx 8/2009, ILC, Right, 2cm, Stage IIA, 0/2 nodes, ER+/PR+, HER2- Dx 8/2013, ILC, Right, Stage IV, 8/12 nodes, ER+/PR+, HER2- Chemotherapy Doxil (doxorubicin), Taxol (paclitaxel), Xeloda (capecitabine) Chemotherapy Halaven (eribulin) Surgery Lymph node removal: Right, Underarm/Axillary; Mastectomy: Right; Reconstruction (right): DIEP flap Targeted Therapy Ibrance (palbociclib) Chemotherapy CMF Radiation Therapy Whole-breast: Breast, Lymph nodes Surgery Lumpectomy: Right; Lymph node removal Targeted Therapy Afinitor (everolimus) Hormonal Therapy Arimidex (anastrozole), Aromasin (exemestane), Faslodex (fulvestrant), Femara (letrozole) Surgery Prophylactic ovary removal Radiation Therapy External: Bone
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Mar 4, 2016 09:12PM Hummingbird4 wrote:

Evelyn, sorry - I was posting and didn't see your response to Stephanie.

Dx 8/2009, ILC, Right, 2cm, Stage IIA, 0/2 nodes, ER+/PR+, HER2- Dx 8/2013, ILC, Right, Stage IV, 8/12 nodes, ER+/PR+, HER2- Chemotherapy Doxil (doxorubicin), Taxol (paclitaxel), Xeloda (capecitabine) Chemotherapy Halaven (eribulin) Surgery Lymph node removal: Right, Underarm/Axillary; Mastectomy: Right; Reconstruction (right): DIEP flap Targeted Therapy Ibrance (palbociclib) Chemotherapy CMF Radiation Therapy Whole-breast: Breast, Lymph nodes Surgery Lumpectomy: Right; Lymph node removal Targeted Therapy Afinitor (everolimus) Hormonal Therapy Arimidex (anastrozole), Aromasin (exemestane), Faslodex (fulvestrant), Femara (letrozole) Surgery Prophylactic ovary removal Radiation Therapy External: Bone
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Mar 5, 2016 10:02AM Longtermsurvivor wrote:

HI Evelyn,

I think a second opinion could be helpful as you seem to be offered a variety of options without any clear guidance.

Can you get to a cancer center or expert? Have you considered topical treatment like surgery or internal chemotherapy too?

I've learned a lot about living with this from the ovarian and primary peritoneal cancer communities, but our treatments do differ.

Hummingbird, so very happy that the taxol is giving you improved quality of life (QOL). I remember how much you were suffering earlier this year and how my heart would surge in empathy! Fingers crossed that your response improves and your QOL along with it!

btw, I've had many partial obstructions of large and small bowel due to my rare genetic condition and it really, really hurts. I hate the NG tube and sometimes think I'd rather die than undergo that trauma again. But that's a line in the sand that may blow away in the winds of time.

Hope others join us here, we seem to be a small bunch.

warm healing regards, all, Stephanie

Grateful to be here. Advanced breast cancer for 25 years, engage holistic approaches. Am dealing with ascites and many mets. Am on hospice.
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Mar 5, 2016 11:16AM - edited Mar 5, 2016 11:29AM by Rosevalley

I also have ILC and have had ascites since May, first series of taps to remove fluid were summer of 2015. I had a pleurx catheter placed in September and drain every other day which has provided me huge comfort. It is hard living with drains coming out and no more baths, but the removal of liters is a great comfort. It is easy and for the most part painless to remove the fluid. The fullness and nausea and pressure on the stomach and gut is instant and welcome. You don't share if you are a lobular pt or not. It is common for lobular cancer to spread to the reproductive organs and gut. Mine is in the omentum, messentary and intestines small bowel, duodenum. I was hospitalized with a partial bowel obstruction in early December. I was plagued by Nausea and vomiting every day for Dec and Jan and part of Feb. It was miserable. They tried Herceptin and my markers climbed and there was worsening gastric issues. They tried Doxil 2x and my markers increased and there was no improvement. I asked to try Faslodex again and there was a remarkable decrease in the cancers' grip on my gut. I can now eat soft foods again. Only one episode of N/V in 3 weeks. The ascites has decreased a small amount, but I feel much better. So that's my peritoneal carcinomatosis story.

I hope you are able to get the cancer under control before the cancer thickens the intestines and slows the motility or partial stops some areas, that's what happened in my case. I am still unraveling the effects. Taking reglan 3 times a day to strength the motility and gastric emptying helps. I also take CBD tincture which is from pot and helps with controlling nausea. It works. The is very little to no THC and no "high." It's expensive 30.00 a small bottle but it works! You place drops under your tongue and they are flavored.

Good luck. This is a hard road and there aren't many of us. Keep us posted on how you are doing and what works. It's good to share information for those folks in the wings, who might like yourself, be looking for answers to help themselves. Best wishes on your new treatment options and may they be successful.

Double mastectomy 07/ chemo ACT, Radiation/ 07 Arimidex, 08 Aromasin, 2012 Faslodex, 2014 Afinitor / mets spine, bones 6/2015 mets to omentum, malignant ascites, lung, liver/ 2016 Herceptin, Doxil, Faslodex. Ibrance, Taxol, Abraxane, Navelbine Dx 1/2/2007, ILC, 6cm+, Stage IIIA, Grade 1, 1/17 nodes, ER+/PR+, HER2- Dx 4/2/2012, ILC, 6cm+, Stage IV, Grade 1, 1/17 nodes, mets, ER+/PR+, HER2- Dx 6/1/2015, ILC, 6cm+, Stage IV, Grade 2, 1/17 nodes, ER+/PR+, HER2+ (FISH)
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Mar 5, 2016 11:19AM Rosevalley wrote:

Humingbird thanks for sharing that Taxol has improved your QOL! May that continue! We need all the good news we can get. Blessings to us all on this path it's hard.

Double mastectomy 07/ chemo ACT, Radiation/ 07 Arimidex, 08 Aromasin, 2012 Faslodex, 2014 Afinitor / mets spine, bones 6/2015 mets to omentum, malignant ascites, lung, liver/ 2016 Herceptin, Doxil, Faslodex. Ibrance, Taxol, Abraxane, Navelbine Dx 1/2/2007, ILC, 6cm+, Stage IIIA, Grade 1, 1/17 nodes, ER+/PR+, HER2- Dx 4/2/2012, ILC, 6cm+, Stage IV, Grade 1, 1/17 nodes, mets, ER+/PR+, HER2- Dx 6/1/2015, ILC, 6cm+, Stage IV, Grade 2, 1/17 nodes, ER+/PR+, HER2+ (FISH)
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Mar 5, 2016 12:16PM Hummingbird4 wrote:

Stephanie and Rosevalley, thank you so much for your caring, good wishes, and support. Please know that I am thinking of you, praying for you, and hoping with all my heart that you stay comfortable. I have learned much more from the information and personal experiences that you and Evelyn have shared here than I was able to gather from my cancer center so far. Thank you.

Evelyn, thank you for starting this thread. Hopefully more ladies in this situation will join in. Good luck with making decisions on your treatment. Best wishes are going out to you.

Dx 8/2009, ILC, Right, 2cm, Stage IIA, 0/2 nodes, ER+/PR+, HER2- Dx 8/2013, ILC, Right, Stage IV, 8/12 nodes, ER+/PR+, HER2- Chemotherapy Doxil (doxorubicin), Taxol (paclitaxel), Xeloda (capecitabine) Chemotherapy Halaven (eribulin) Surgery Lymph node removal: Right, Underarm/Axillary; Mastectomy: Right; Reconstruction (right): DIEP flap Targeted Therapy Ibrance (palbociclib) Chemotherapy CMF Radiation Therapy Whole-breast: Breast, Lymph nodes Surgery Lumpectomy: Right; Lymph node removal Targeted Therapy Afinitor (everolimus) Hormonal Therapy Arimidex (anastrozole), Aromasin (exemestane), Faslodex (fulvestrant), Femara (letrozole) Surgery Prophylactic ovary removal Radiation Therapy External: Bone
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Mar 6, 2016 06:10PM rara_avis wrote:

Hi Evelyn, Stephanie, Hummingbird and Rosevalley,

I'm so grateful for this thread. My heart goes out to all of you. I've had an easy time of it so far, but I think that's about to change. I was diagnosed in 2012 with invasive carcinoma with ductal and lobular characteristics. "They" all thought treatment would be lumpectomy, radiation, done. However, the cancer marker didn't go down. A PET scan didn't show anything, and I was all set to start radiation (got the tats!), when my second opinion guy said I should get a CT. That showed "stranding and haziness" on the peritoneum, and a biopsy confirmed that it was peritoneal carcinomatosis stemming from the breast cancer. Charming.

First line treatment was Faslodex (fulvestrant) plus Femara (letrozole). That treatment was effective without much in the way of side effects for almost 2 years. However, in July of 2014, the marker, which had gone down from a high of 288 to 89, started climbing again. Scans confirmed disease progression. Tried tamoxifen for a couple of months - no dice. Was on Xeloda (capecitabine) from about Oct 2014 until June of 2015. The higher recommended dose was effective, but the hand-foot syndrome was so severe, we lowered the dose, and that didn't work. So along came the newly-approved wonder drug, Ibrance (palbociclib). I'd love to know if any of you have been on it and how it worked. My sense was that it really didn't do much. I got a couple of months of no change and then the cancer marker suddenly doubled. Up until that point, the disease itself had not been giving me any trouble. All my issues were with the treatments and their side effects.

However, two months ago, my belly suddenly ballooned out. The cancer marker had been hovering steadily around 400, but the discomfort from this gastric something was not pleasant. A CT scan showed disease progression and "moderate ascites." Still no organ involvement, however. And I'd love to keep it that way, if at all possible.

So, it seems that I have two treatment options open at this point, IV Taxol versus Exemestane plus everolimus. Oh, ladies, would you be willing to share your experiences to help me make a decision? The e/e is desirable because it's pills, though I've heard the side effects can be nasty. And I don't get the feeling that there's solid evidence of effectiveness with our type of cancer. Has it worked for you?

From what I've been reading on this site, it sounds like Taxol can help with knocking back the ascites. However, I've also heard that it can cause irreversible neuropathy. I've already got some residual neuropathy from the capecitabine, so not really looking forward to more, but if Taxol is the more effective of the two choices against the cancer and ascites, then I just have to deal.

If you were me, with all your experience of these drugs, what would you do?

Thanks so much for any advice, wisdom, etc.

-Erica

Dx 6/6/2012, ILC/IDC, Left, 1cm, Stage IV, metastasized to other, Grade 1, 2/2 nodes, ER+/PR+, HER2-
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Mar 6, 2016 07:29PM Longtermsurvivor wrote:

Hello, dear Erica,

So glad you found us and joined this topic...though I'm very sorry that you need to be here.

Erica, I'm absolutely worthless when it comes to treatment choices, especially those involving chemotherapy but even everolimus/afinitor. I assume you've found the bco e/e topic as well as the Taxol topic and have at least skimmed the mountain of posts to consider what's possible for you...what to hope for with treatment response and what to expect with unwanted effects. The risk/benefit ratios do trend away from our favor the further we go on with cancer, though every now and then someone gets big response from a new and "last ditch" treatment regimen.

May you find yours!

Erica, I'm a fairly good informant for dealing with peritoneal mets, ascites, paracentesis procedures, indwelling drains and mets to liver, lung, pleura. My mets to bones, lymph nodes and other areas haven't troubled me, so you'll need to find others to fill in those blanks.

Again, I'm happy to meet you and happy to be both supporter and informant.

warmest healing wishes, Stephanie


Grateful to be here. Advanced breast cancer for 25 years, engage holistic approaches. Am dealing with ascites and many mets. Am on hospice.
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Mar 6, 2016 07:40PM Rosevalley wrote:

rara-avis I had severe neuropathy and blistering on the bottom of my feet from taxol. At the end of 4 treatments I couldn't feel my feet at all. It took months for the feeling to come back. My feet have never been the same. But I took dose dense taxol before I was stage 4 and they treat stage 4 cancer differently when they dose it. So with that said, the effects might be different you would have to ask your oncologist. A milder dose of taxol might be very tolerable I don't know.

About the afinitor and aromasin, I took that for 6 months. It brought me from nearly dying from the cancer eating out all my bone marrow. I had around 20 transfusions. It allowed the bone mets to die and the marrow to regenerate. The side effects for me were mouth sores, diarrhea and heart arrythmias and edema. It also jacked up my blood pressure. The edema was so bad I could only wear flip flops. I couldn't get my feet into shoes. I finally stopped taking the afinitor and I was on it every other day. I continued taking the aromasin for 8 months until it stopped working. Not everybody gets the edema and BP issues while taking afinitor, most get the mouth sores and the diarrhea. You can read the site on AA and check it out. It's very nice that it's pills and it did work. I will say that. I couldn't handle the side effects. For many people it's not a bad treatment at all. I would certainly try it.

If you are having moderate ascites how are they getting rid of the fluid? Having liters of fluid on board is miserable.

Double mastectomy 07/ chemo ACT, Radiation/ 07 Arimidex, 08 Aromasin, 2012 Faslodex, 2014 Afinitor / mets spine, bones 6/2015 mets to omentum, malignant ascites, lung, liver/ 2016 Herceptin, Doxil, Faslodex. Ibrance, Taxol, Abraxane, Navelbine Dx 1/2/2007, ILC, 6cm+, Stage IIIA, Grade 1, 1/17 nodes, ER+/PR+, HER2- Dx 4/2/2012, ILC, 6cm+, Stage IV, Grade 1, 1/17 nodes, mets, ER+/PR+, HER2- Dx 6/1/2015, ILC, 6cm+, Stage IV, Grade 2, 1/17 nodes, ER+/PR+, HER2+ (FISH)
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Mar 6, 2016 08:18PM Moderators wrote:

Erica, we must also chime in to welcome you here, though we are very sorry you have had to join. We just hope that you find support, and some answers here, and are thinking of you.

Warm hugs,

The Mods

To send a Private Message to the Mods: community.breastcancer.org/mem...
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Mar 7, 2016 11:16AM Hummingbird4 wrote:

Hi Erica,

Sorry you have this going on, but glad you joined in. You have a difficult decision to make. Although I can't give advice on which treatment you should choose, everyone is so different, I can tell you my experience with those drugs:

I took everolimus/exemestane (Afinitor/Aromasin) as my first treatment after the stage 4 diagnosis. I was on the highest dose, 10mg. per day, for almost 6 months. It wasn't an easy treatment, but I thought I was doing pretty well. I had the normal side effects of diarrhea, rash, fatigue, high blood pressure, and a few mouth sores. My first scan after 3 months showed stability. But then in the 6th month, I got a cough, coughed up blood and a blood clot, and became very short of breath. Turns out the A/A combo caused bad inflammation in my lungs and I had possible hemorrhaging. Plus that, the scan showed progression - so of course I was taken off that combo!

I was then on 2 clinical trials which didn't really work and so I went on to Ibrance/Femara. The first scan after 3 months showed stability and I had decreasing markers, but the next scan showed a lot of progression and that is when my belly issues became horrible. I tried Xeloda and after just the first 4 pills - I became very ill from it.

So on to Taxol I went as I was in severe pain and discomfort from the Belly and bowel mets which had slowed down and then shut down my bowels. My onc said the hope was that the Taxol would kick back the cancer and I would get relief. It took a few weeks to begin to lessen the symptoms, but I'm happy to say that now after 6 infusions - I feel much, much better. My CT scan 2 weeks ago only shows stability, but because the swelling went down a lot and I have very little pain now - I have to believe the Taxol is working!

Yes, I agree that it's a pain going for weekly infusions - 3 weeks on 1 week off - instead of taking pills at home, and I do need to get a port now, but if the Taxol is working, that's fine with me!

I wish you luck in making your decision, it's tough! Best wishes. Please let us know and keep us updated. I'll be thinking of you.

Dx 8/2009, ILC, Right, 2cm, Stage IIA, 0/2 nodes, ER+/PR+, HER2- Dx 8/2013, ILC, Right, Stage IV, 8/12 nodes, ER+/PR+, HER2- Chemotherapy Doxil (doxorubicin), Taxol (paclitaxel), Xeloda (capecitabine) Chemotherapy Halaven (eribulin) Surgery Lymph node removal: Right, Underarm/Axillary; Mastectomy: Right; Reconstruction (right): DIEP flap Targeted Therapy Ibrance (palbociclib) Chemotherapy CMF Radiation Therapy Whole-breast: Breast, Lymph nodes Surgery Lumpectomy: Right; Lymph node removal Targeted Therapy Afinitor (everolimus) Hormonal Therapy Arimidex (anastrozole), Aromasin (exemestane), Faslodex (fulvestrant), Femara (letrozole) Surgery Prophylactic ovary removal Radiation Therapy External: Bone
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Mar 8, 2016 02:10PM MustangIA wrote:

I, too, have abdominal involvement (ovaries, peritoneum, small intestines). I was diagnosed in June of 2011 during a hysterectomy. No bones, no organs (until this last fall when I had some progression to my lung). My original diagnosis in 2007 was Ductal Carcinoma with lobular tendencies. I did Xeloda out of the gate in June of 2011 and got to NED, switched to Femara where I stayed NED for just under four years. This time last year, my markers had risen and I had progression in my intestines. Did a short run of Afinitor/Aromasin (E/E) - didn't work at all for me. Tried Xeloda again - but I was so sick, I couldn't tolerate the gastric side effects. Some ascites (non-malignant) during a partial bowel obstruction episode in August. Started Abraxane in September - was NED again by December. I did six full months of Abraxane and had scans again a couple weeks ago - still NED. I am now starting Faslodex today (sans Ibrance) in hopes I can stay NED for awhile. If markers start to creep up, we will add Ibrance to the mix. I am a huge believer in the taxanes and would go back to Abraxane in a heart beat if I need to. Pretty tolerable, but am glad for the break and hopeful Faslodex will treat me right.

Sorry to meet you all here, but glad to know there are a few of us to share info. I have always felt pretty alone with this - most people don't seem to have mets in the abdomen.

Original DX: 12/15/2006, ER+, PR+, Her2-, Cancer can suck it. Dx 6/6/2011, IDC, Stage IV, Grade 2, mets, ER+/PR+, HER2-
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Mar 8, 2016 07:39PM Hummingbird4 wrote:

Hi Mustang, so glad you joined in. I am so happy to hear that you are NED! Gives me hope that even if I never get to NED, that it is at least possible to stay stable for a while. I will keep Abraxane in mind for the future, based on your experience with it.

Best wishes with your new treatment. Hope you have a very long success with Faslodex!

Dx 8/2009, ILC, Right, 2cm, Stage IIA, 0/2 nodes, ER+/PR+, HER2- Dx 8/2013, ILC, Right, Stage IV, 8/12 nodes, ER+/PR+, HER2- Chemotherapy Doxil (doxorubicin), Taxol (paclitaxel), Xeloda (capecitabine) Chemotherapy Halaven (eribulin) Surgery Lymph node removal: Right, Underarm/Axillary; Mastectomy: Right; Reconstruction (right): DIEP flap Targeted Therapy Ibrance (palbociclib) Chemotherapy CMF Radiation Therapy Whole-breast: Breast, Lymph nodes Surgery Lumpectomy: Right; Lymph node removal Targeted Therapy Afinitor (everolimus) Hormonal Therapy Arimidex (anastrozole), Aromasin (exemestane), Faslodex (fulvestrant), Femara (letrozole) Surgery Prophylactic ovary removal Radiation Therapy External: Bone
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Mar 9, 2016 01:15AM Rosevalley wrote:

Welcome Mustang. I hope your new treatment works for years! There aren't many of us with abdominal mets.

Double mastectomy 07/ chemo ACT, Radiation/ 07 Arimidex, 08 Aromasin, 2012 Faslodex, 2014 Afinitor / mets spine, bones 6/2015 mets to omentum, malignant ascites, lung, liver/ 2016 Herceptin, Doxil, Faslodex. Ibrance, Taxol, Abraxane, Navelbine Dx 1/2/2007, ILC, 6cm+, Stage IIIA, Grade 1, 1/17 nodes, ER+/PR+, HER2- Dx 4/2/2012, ILC, 6cm+, Stage IV, Grade 1, 1/17 nodes, mets, ER+/PR+, HER2- Dx 6/1/2015, ILC, 6cm+, Stage IV, Grade 2, 1/17 nodes, ER+/PR+, HER2+ (FISH)
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Mar 9, 2016 09:43AM Longtermsurvivor wrote:

Hi Mustang, welcome! There are so few of us and always grateful to meet another, though our circumstances are challenging.

Evelyn, haven't heard from you in a while and wondering how you're doing now?

Loving kindness and healing light for Erica, Hummingbird, Rosevalley and all the shy ones with peritoneal mets who are reading but not writing to this topic/thread. Yet. Join us, if you will.

May we all be healed on all levels, Stephanie

Grateful to be here. Advanced breast cancer for 25 years, engage holistic approaches. Am dealing with ascites and many mets. Am on hospice.
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Mar 9, 2016 10:13AM MustangIA wrote:

Thanks for the warm welcome! I had my first Faslodex shots yesterday - it wasn't too terrible. I am hopeful! Sending love and prayers to you all! Sally

Original DX: 12/15/2006, ER+, PR+, Her2-, Cancer can suck it. Dx 6/6/2011, IDC, Stage IV, Grade 2, mets, ER+/PR+, HER2-
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Mar 10, 2016 12:55PM evelym wrote:

Just started on Ibrance and Femora. How long does it take for the side effects to appear? Am thinking of going to MD Anderson to see if they have any other ideas of what to go on that might work better. Don't quite know how to go about it. My onc suggested that maybe I should go on IV chemo (Halavan) if I want to stop disease progression. Who wouldn"t? Haven't gotten much direction from her. Hate the thought of it but don't know if I should stay on Ibrance awhile first. There is really no way to measure disease progression on scans. Has anyone gone for 2nd opinions this late in the game? Wonder if it is a waste of time to do so. My abdomen is getting bigger and feel totally bloated up whenever I eat. Know I don't have much bowel space between the cancer and adhesions and am afraid to eat much for fear of another obstruction and afraid to travel for fear of having an obstruction while out of town. All I can say is this whole thing is the pits!!!

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Mar 10, 2016 01:31PM rara_avis wrote:

Hi all,

Thanks, Hummingbird. All the posts here are very helpful, but your experience seems most analogous to mine. I'm sorry that anyone else has to go through these things, but I'm grateful for the sharing - really aids in the decision -making. And I'm so glad you're getting some relief. Hope it keeps going and start really kicking back the disease.

I accompanied a friend to her pre-chemo oncologist visit. Our oncologists are in the same practice. Because I was Stage IV right out of the gate, I never had to do dose-dense chemo. It was a real eye-opener for me as to what that entails. Kudos to all of you who have made it through that!

I mentioned my situation and asked my friend's oncologist what she would recommend and she didn't hesitate a minute. Taxol. My sense of everything I've read and experienced is that specifically for peritoneal involvement beyond first-line treatment, everolimus/exemestane isn't very effective for any length of time. So looks like I'm heading into IV-land for the first time since diagnosis. It's a relief to have that decision made, though I hate needles and faint at the sight of blood. I don't know what sort of regimen my oncologist will come up with, but it better not involve giving myself shots of any kind... ;>)

Sally, it was Faslodex plus Femara that kept me progression-free for 2 years. I hope Faslodex performs well for you. Though I hate needles, I found the treatment really easy. I felt good and didn't notice any side effects, except occasional itching at an injection site. As time went on, I did begin to feel creaky, but chalked it up to old age creeping up on me. A friend who had been on Femara kept asking me if I wasn't suffering from joint pain, but I didn't make the connection. When I went off the Femara, the creakiness disappeared. I was so surprised and happy to be back to feeling fluid and supple, not stiff and achy.

Rosevalley, as far as I can tell, there are no plans for any kind of action to remove the ascites. It is more than annoying, but I think I can deal until I can get started on taxol. My oncologist says that knocking back the cancer will knock back the ascites. We'll see. If I wind up in real distress, perhaps I'll see about paracentesis. I'm trying to eat small amounts at frequent intervals rather than just three meals a day. That seems to help. The weird thing is that the skin of my back and of my belly has become oddly sensitive. I have no idea what that's about.

Stephanie, you are a gem. Thanks. I'm really bad at expressing how much all the stories I read here affect me and how warmly I feel towards the folks on this website. I'm a computer programmer and my focus is always to find the bug and fix it. So if my posts seem lacking in some of the niceties, please chalk it up to the nerd factor. However, I'm trying to learn from your articulate graciousness.

Dx 6/6/2012, ILC/IDC, Left, 1cm, Stage IV, metastasized to other, Grade 1, 2/2 nodes, ER+/PR+, HER2-
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Mar 10, 2016 01:33PM Rosevalley wrote:

I went last year to get a second opinion at MAYO's and the return to Faslodex was their breast cancer specialists idea. It took asking for months to try it. It's working. So it's never too late to try second opinion. I wanted to try Ibrance and was afraid to because I had an implanted drain and low counts on Ibrance is common. I was worried about getting peritonitis. Traveling with ascites on board is hard and uncomfortable. I did it this last summer and it was the "pits" as you put it. :-) May the Ibrance and femara work and bring you relief!

Hey stephanie glad to hear you had a better night last night. Hope it continues. Hope everyone here does well.

Double mastectomy 07/ chemo ACT, Radiation/ 07 Arimidex, 08 Aromasin, 2012 Faslodex, 2014 Afinitor / mets spine, bones 6/2015 mets to omentum, malignant ascites, lung, liver/ 2016 Herceptin, Doxil, Faslodex. Ibrance, Taxol, Abraxane, Navelbine Dx 1/2/2007, ILC, 6cm+, Stage IIIA, Grade 1, 1/17 nodes, ER+/PR+, HER2- Dx 4/2/2012, ILC, 6cm+, Stage IV, Grade 1, 1/17 nodes, mets, ER+/PR+, HER2- Dx 6/1/2015, ILC, 6cm+, Stage IV, Grade 2, 1/17 nodes, ER+/PR+, HER2+ (FISH)
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Mar 10, 2016 09:29PM Hummingbird4 wrote:

Evelyn, I found Ibrance/Femara to be so easy. For the first 3 months, I had no side effects at all. Then months 4 to 6, I did get headaches - which I don't think is too common - but Advil did the trick. Wish I could have stayed on that combo much, much longer! My onc said the same thing to me as yours - I could have gone right to chemo to knock things back, but I chose the Ibrance because of less side effects and to give it a shot. I'm sorry to hear you are experiencing worsening symptoms. I hope Ibrance works for you, and soon.

Erica, I did have dose dense chemo the first time and it was rough, but now with Taxol 3 weeks on 1 week off - the dose is less for stage 4 and so it's much easier to deal with. I think you will find that too. Like you, I hate needles and since I was little, I get very light-headed at the sight of blood. After having a lot of surgery, I thought I would get better with that, but I haven't much. So after my veins started showing signs of collapse two weeks ago, I'm going to get a port on Tuesday so then I won't have to deal with all the extra poking! Has your onc mentioned getting a port to you?

Sally, good luck with Faslodex. Hope you get a long success with it!

Dx 8/2009, ILC, Right, 2cm, Stage IIA, 0/2 nodes, ER+/PR+, HER2- Dx 8/2013, ILC, Right, Stage IV, 8/12 nodes, ER+/PR+, HER2- Chemotherapy Doxil (doxorubicin), Taxol (paclitaxel), Xeloda (capecitabine) Chemotherapy Halaven (eribulin) Surgery Lymph node removal: Right, Underarm/Axillary; Mastectomy: Right; Reconstruction (right): DIEP flap Targeted Therapy Ibrance (palbociclib) Chemotherapy CMF Radiation Therapy Whole-breast: Breast, Lymph nodes Surgery Lumpectomy: Right; Lymph node removal Targeted Therapy Afinitor (everolimus) Hormonal Therapy Arimidex (anastrozole), Aromasin (exemestane), Faslodex (fulvestrant), Femara (letrozole) Surgery Prophylactic ovary removal Radiation Therapy External: Bone
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Mar 10, 2016 10:44PM Rosevalley wrote:

Hummingbird - I have had a power port since 2012 and I love it. It always draws for labs and works like a charm. It can be used for contrast and CTs. Nice. I recommend power ports (portacaths). I think you will love it. Once it heals they are so easy. No more poking for veins. I am glad your experience with taxol is better. I thought the stage 4 version would be more tolerable. Wishing you long success with it.

Double mastectomy 07/ chemo ACT, Radiation/ 07 Arimidex, 08 Aromasin, 2012 Faslodex, 2014 Afinitor / mets spine, bones 6/2015 mets to omentum, malignant ascites, lung, liver/ 2016 Herceptin, Doxil, Faslodex. Ibrance, Taxol, Abraxane, Navelbine Dx 1/2/2007, ILC, 6cm+, Stage IIIA, Grade 1, 1/17 nodes, ER+/PR+, HER2- Dx 4/2/2012, ILC, 6cm+, Stage IV, Grade 1, 1/17 nodes, mets, ER+/PR+, HER2- Dx 6/1/2015, ILC, 6cm+, Stage IV, Grade 2, 1/17 nodes, ER+/PR+, HER2+ (FISH)
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Mar 10, 2016 11:07PM Hummingbird4 wrote:

Rosevalley, thank you. I think I will be getting a power port. Good to know you like yours and recommend it. I was a little hesitant, but a few ladies convinced me to get one.

Dx 8/2009, ILC, Right, 2cm, Stage IIA, 0/2 nodes, ER+/PR+, HER2- Dx 8/2013, ILC, Right, Stage IV, 8/12 nodes, ER+/PR+, HER2- Chemotherapy Doxil (doxorubicin), Taxol (paclitaxel), Xeloda (capecitabine) Chemotherapy Halaven (eribulin) Surgery Lymph node removal: Right, Underarm/Axillary; Mastectomy: Right; Reconstruction (right): DIEP flap Targeted Therapy Ibrance (palbociclib) Chemotherapy CMF Radiation Therapy Whole-breast: Breast, Lymph nodes Surgery Lumpectomy: Right; Lymph node removal Targeted Therapy Afinitor (everolimus) Hormonal Therapy Arimidex (anastrozole), Aromasin (exemestane), Faslodex (fulvestrant), Femara (letrozole) Surgery Prophylactic ovary removal Radiation Therapy External: Bone
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Mar 12, 2016 10:52AM Longtermsurvivor wrote:

Hi Hummingbird,

My old-fashioned port-a-cath will turn 14 years old next month. She's been used for weekly infusions of Iscador and though the skin is beat up and there's no longer blood return, having it has been a life saver...well, a vein and stress saver. :)

An implanted port is much better than the lines that hang out of chest or arm - you can swim, bathe, etc. without worry of infection or entanglement.

A tip - before going for scans or when undergoing procedures that require IVs, be sure to check with the facility that someone there can access your power port. If not, you may need to have it accessed at your oncology office, then wear the needle and line to the other facility. Someone there should be able to properly de-access your port, but it's easy to learn to do on your own, if you can reach it easily.

No sense wearing out your veins for any purpose when you have a perfectly good port.

healing wishes, dear Hummingbird, Stephanie

Grateful to be here. Advanced breast cancer for 25 years, engage holistic approaches. Am dealing with ascites and many mets. Am on hospice.
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Mar 12, 2016 03:21PM Hummingbird4 wrote:

Hi Stephanie, thank you so much for the info and tip on the port. Good to hear you have done well with yours for so long. I hope you continue to feel better and more comfortable than you were a few days ago. I was relieved to hear you have less pain and are sleeping better.

Thinking of you all and hoping for good days.

Dx 8/2009, ILC, Right, 2cm, Stage IIA, 0/2 nodes, ER+/PR+, HER2- Dx 8/2013, ILC, Right, Stage IV, 8/12 nodes, ER+/PR+, HER2- Chemotherapy Doxil (doxorubicin), Taxol (paclitaxel), Xeloda (capecitabine) Chemotherapy Halaven (eribulin) Surgery Lymph node removal: Right, Underarm/Axillary; Mastectomy: Right; Reconstruction (right): DIEP flap Targeted Therapy Ibrance (palbociclib) Chemotherapy CMF Radiation Therapy Whole-breast: Breast, Lymph nodes Surgery Lumpectomy: Right; Lymph node removal Targeted Therapy Afinitor (everolimus) Hormonal Therapy Arimidex (anastrozole), Aromasin (exemestane), Faslodex (fulvestrant), Femara (letrozole) Surgery Prophylactic ovary removal Radiation Therapy External: Bone
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Mar 13, 2016 01:02AM ShetlandPony wrote:

Hello, Everyone. This thread has frightened me, but that is tempered by all the kindness, encouragement, and problem-solving. I may need the information here in the future. When I was diagnosed with mets we were focused on the alarming condition of my liver, but now I am thinking about the fact that the retroperitoneal nodes were active and enlarged on the PET-CT. I'm thinking about how I often had reflux and bloating before diagnosis and treatment. At the time I attributed this to uterine fibroids and lactose intolerance. But my onc said the reflux was from the englarged liver; I didn't think to mention the bloating. But now I wonder if there could have been other mets in the abdomen. And I'm worried because I am having reflux and bloating again. Sorry, I know I am rambling here. I guess I want to ask: What does it mean when the retroperitoneal nodes are involved? Will my PET-CT scans catch abdominal mets, or can they be diffuse and hard to detect? Do I need a CT with contrast? What symptoms should I be on the lookout for?

2011 Stage I ILC ER+PR+ Her2- 1.5 cm grade 1, ITCs sn. Lumpectomy, radiation, tamoxifen. 2014 Stage IV ILC ER+PR+ Her2- 2 cm grade 2, mets to breast, liver, retroperitoneal nodes. Taxol NEAD. 2015, 2016 Ibrance+letrozole. 2017 Faslodex + Afinitor
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Mar 13, 2016 10:21AM - edited Mar 13, 2016 10:22AM by Longtermsurvivor

Hi Shetland Pony,

We've been connected at other bco topics and I'm sad that you're worried about progression into peritoneal region, which is close to the peritoneum. Will try to provide helpful information and details. Please take what you like and leave the rest!

Here's how I think about the belly structures - the peritoneum is a big juicy belly sack that holds part of the digestive and reproductive organs. The space at the back of the sack is the retroperitoneum (retro - behind) and in that area are other parts of the digestive and reproductive organs and also the kidneys and urinary tract.

Here's the anatomy lesson with proper language. :)

https://en.wikipedia.org/wiki/Peritoneum

Your primary question is whether your problems with bloating and reflux could be due to retroperitoneal or undetected peritoneal mets.

That's a hard question for anyone to answer, especially because metastatic lobular breast cancer is notoriously hard to image as it tends to grow in threads, strands and sheets, unlike ductal which seems to make tumors in bones, organs, lymph nodes and other places.

You're going to have to talk with your doctors about this, Shetland Pony

But, what I can do is offer a very un-medical description of how I sort out the bloating caused by belly fluid aka ascites (mine due to mets in the region and liver mets).

Put on a pair of jeans that used to fit. Feel how they feel against your belly. Can you button them? Stand in front of a mirror and check your side view as well as front view. Before having the drain installed, I looked like I was 5 months pregnant. Now, I hardly show. ;) Look inside yourself. How do you feel when you change position? Do you enjoy bending over, sitting, standing, walking? How do you feel while eating (fill up quickly? nauseous?)? After eating? When is reflux worse (which positions make it worse? how long after eating? which foods help and which harm?)? What other digestive problems are you having? Any signs of gi tract blockage besides the reflux which can be due to many things?

Shetland Pony, I think these are some questions doctors should ask, but you may need to volunteer the details to get a clearer idea about the causes of your troubles and what can be done to relieve them. Work with your doctors and try a GP or PCP if you can't get any satisfaction from your oncologist. The cancer doctors tend to look at the cancer, not the whole patient and someone to evaluate all of you could be very helpful now.

As usual, I've gone on too long. Hope you find this useful and that you will ask detailed questions.

Also hope others chime in with their own experiences they/we vary so much.

Together we are stronger, Stephanie


Grateful to be here. Advanced breast cancer for 25 years, engage holistic approaches. Am dealing with ascites and many mets. Am on hospice.
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Mar 15, 2016 09:12PM rara_avis wrote:

Hi Shetland Pony,

Your symptoms sound so much like my own. By the end of last week, I was incredibly uncomfortable, and looked to be quite pregnant. I couldn't sit with my back against anything or lie down on my back - it hurt in a weird way. I said all this to my oncologist when I told her my treatment decision, and she ordered a therapeutic paracentesis last Friday. They were able to give me an appointment for Monday (good grief, was that only yesterday???), and I spent a truly miserable weekend, lying on my side, mostly dozing.

So, baby had her first para. I won't relate the details because they sound scary (the nurse's recitation of what was to happen pretty much freaked me out), but it was completely bearable. And the relief was incredible and instantaneous. I could feel my belly going down as the ascites was sucked out. For some reason, they only took 3 liters, saying it was "because it's your first time." What's that got to do with it? Just get it ALL OUT!!!

My appointment was for 9AM, and I had some idea that I'd go in, have the procedure, and then go back to work. (I work at the hospital where the procedure was done) Yeah, right. That might be possible for some folks, but not me. Somewhere in the weekend my husband insisted that he'd drive me in and take me home after, and I decided to take a sick day. Good decision. Mostly I needed to catch up on sleep and let my body take its time in healing. I worked from home today, took it quite easy, and am feeling so much more like myself! Tomorrow, I'll go in to work. There's still more ascites there, but presumably the taxol, which I start next week, will begin to take care of it. I'm hoping that my experience will be like Hummingbird's!

Anyway, here are my thoughts. I'm going to be very up front and state my opinions boldly. Please remember that these are only my opinions, so be sure to read and compare and talk to your doctors.

1. CT scan is what found my peritoneal involvement - the PET/CT did not. So CT with contrast is my hero.
2. Sounds like ascites to me - CT scan showed it in my case, and is why my oncologist ordered the paracentesis.
3. Ibrance/letrozole didn't really work for me, and I started having ascites for the first time while on that regimen

Ascites is lousy, but probably better than more mets. The CTs have shown the disease and its progression in my case. The readings are very subjective because, as Stephanie wrote, lobular doesn't make tumors. The reports read like "more hazing and stranding than last time." Does it say how much more? Not really. My oncologist always looks at the scans herself.

I haven't had any retroperitoneal involvement, but the CT report always mentions that the retroperitoneal and mesenteric nodes, whatever and wherever they may be, were examined.

So, Shetland Pony, I hope this helps and doesn't just frighten you more. I like Stephanie's recommendations for self-diagnosis. What I found is that I had a lot of pain in the belly, but it felt more like muscle pain than gas pains. Bending over to change socks was uncomfortable. And at the height of it, my sides ballooned out, too

OK, I will stop nattering now.

Hope you find relief soon.

- Erica

Dx 6/6/2012, ILC/IDC, Left, 1cm, Stage IV, metastasized to other, Grade 1, 2/2 nodes, ER+/PR+, HER2-
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Mar 16, 2016 03:29AM ShetlandPony wrote:

Thank you, Stephanie and Erica. I don't have discomfort with moving, although I do have the renewal of some liver pains. (I posted about that on the liver mets thread.) The pregnant look comes and goes. I wonder what that means. It went away for a long time, and now that I'm suspecting liver activity again, the pregnant look comes back, with reflux and bloating after eating. So it did take a CT with contrast to show your peritoneal involvement, Erica. Do you mean the ascites, or something else too? I'm wondering not just about ascites, but about diffuse weird ILC mets. I don't want anything to go undetected and untreated. My onc is supposed to call tomorrow.

2011 Stage I ILC ER+PR+ Her2- 1.5 cm grade 1, ITCs sn. Lumpectomy, radiation, tamoxifen. 2014 Stage IV ILC ER+PR+ Her2- 2 cm grade 2, mets to breast, liver, retroperitoneal nodes. Taxol NEAD. 2015, 2016 Ibrance+letrozole. 2017 Faslodex + Afinitor

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