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Old 06-05-2011, 03:11 PM   #1
belle
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Trouble swallowing while on TDM1

My mom has been on TDM1 since end of February after progression on Herceptin that followed Taxol+Herceptin. Her bc is HER2 pos, mets to lungs, bones and lymphnodes (supraclavicular, on the neck, axilla).

We don't know if it is a side effect or the lymphnode mets on her sternum are pressing her esophagus, but she has been having trouble swallowing all the time since the treatment began. It has gotten worse lately. Even cream soup, jogurt or water go through very hard. Also excessive salivation, thick like a glue.

Doctors kept saying it must be mets in lymphnodes pressing the esophagus or side effects, wanted to wait and see. But when it's gotten worse we asked if it could be GERD. At our last visit the doctor clarified more symptoms and prescribed Pantroprazol. She said if it doesn't get better, we need to come to the emergency room, so that they can do more checkups, possibly endoscopy.

We took the Pantroprazol for more than a week, salivation got less, but swallowing is still not good. Mom sais it feels like there is a small hole left for swallowing behind the sternum area where the enlarged lymphnodes are.

Mom is more tired than before, lost a lot of weight - because of not eating or the treatment is not working, we don't know... We are going to the doctor this week.

Anyone had an experience with trouble swallowing while taking TDM1? I would appreciate your input.

Hugs,
belle
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Old 06-05-2011, 04:12 PM   #2
chrisy
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Re: Trouble swallowing while on TDM1

Hi
That is one problem I have not had in tdm1, and frankly that's a new one I've not hears of before. I know that may not be a very helpful answer and of course ALL the potential side effects are not yet known. Still, I'm inclined to think that since your mom has known issues with lymph enlargement in the area that it is related to that ratherthan the tdm1.

You are right to get it checked out thoroughly

Hope she can get it resolved soon.
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June 2002 extensive hi grade DCIS (pre-cancer-stage 0, clean sentinal node) Mastectomy/implant - no chemo, rads. "cured?"
9/2004 Diag: Stage IV extensive liver mets (!) ER/PR- Her2+++
10/04-3/05 Weekly Taxol/Carboplatin/Herceptin , complete response!
04/05 - 4/07 Herception every 3 wks, Continue NED
04/07 - recurrence to liver - 2 spots, starting tykerb/avastin trial
06/07 8/07 10/07 Scans show stable, continue on Tykerb/Avastin
01/08 Progression in liver
02/08 Begin (TDM1) trial
08/08 NED! It's Working! Continue on TDM1
02/09 Continue NED
02/10 Continue NED. 5/10 9/10 Scans NED 10/10 Scans NED
12/10 Scans not clear....4/11 Scans suggest progression 6/11 progression confirmed in liver
07/11 - 11/11 Herceptin/Xeloda -not working:(
12/11 Begin MM302 Phase I trial - bust:(
03/12 3rd times the charm? AKT trial

5/12 Scan shows reduction! 7/12 More reduction!!!!
8/12 Whoops...progression...trying for Perjeta/Herceptin (plus some more nasty chemo!)
9/12 Start Perjeta/Herceptin, chemo on hold due to infection/wound in leg, added on cycle 2 &3
11/12 Poops! progression in liver, Stop Perjeta/Taxo/Herc
11/12 Navelbine/Herce[ptin - try for a 3 cycles, no go.
2/13 Gemzar/Carbo/Herceptin - no go.
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Old 06-05-2011, 06:17 PM   #3
oregon
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Re: Trouble swallowing while on TDM1

Hi Belle,

I had difficulty with swallowing while Taxotere, so I thought. However we found out is was really my throat closing up on me and found out this is not uncommon, an anaphylactic reaction. I described it as I felt like my supplements were getting stuck in my throat. Often times the oncologists will up the steroids to try and stop the reaction. However, sometimes one's body just can handle certain chemos. I would suggest you check with the doctor to make sure it's not her throat closing versus a swallowing issues. My allergy doctor said this can be a serious reaction and not ignore it. I wish you the best.
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Old 06-06-2011, 01:55 PM   #4
belle
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Re: Trouble swallowing while on TDM1

Hi Chrisy and Oregon,

Thanks a lot for your advices. We have been to the doctor today. She said we need to wait and see if the next infusions will shrink her enlarged lymphnodes more and mom may eventually can eat better. The first two CT scans have shown stable so far.

In the agreement we signed for the trial, it is written that narrowing of the throat is one of the rare complicating side effects of TDM1. That's why we were also worried that it may need attention.

Our next infusion is on Thursday and we hope things get better.

My best wishes to you, too,
belle
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Old 06-07-2011, 05:17 AM   #5
Sheila
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Re: Trouble swallowing while on TDM1

Belle
Just wondering if she possibly has strictures or narrowing of the esophagus....it is not real common, but simple dilation of the esophagus can relieve it....the procedure may need to be repeated. Do the CT scans show the nodes pressing on that area? Hoping she will overcome this so she can stay on the TDM-1, but if she has to go off it due to side effects, Halaven might do the trick...several of us have had remarkable results with this new chemo.
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Diagnosed at age 49.99999 2/21/2002 via Mammography (Calcifications)
Core Biopsy 2/22/02
L. Mastectomy 2/25/2002
Stage 1, 0.7cm IDC, Node Neg from 19 nodes Her2+++ ER PR Neg
6/2003 Reconstruction W/ Tissue Expander, Silicone Implant
9/2003 Stage IV with Mets to Supraclavicular nodes
9/2003 Began Herceptin every 3 weeks
3/2006 Xeloda 2500mg/Herceptin for recurrence to neck nodes
3/2007 Added back the Xeloda with Herceptin for continued mets to nodes
5/2007 Taken Off Xeloda, no longer working
6/14/07 Taxol/Herceptin/Avastin
3/26 - 5/28/08 Taxol Holiday Whopeeeeeeeee
5/29 2008 Back on Taxol w Herceptin q 2 weeks
4/2009 Progression on Taxol & Paralyzed L Vocal Cord from Nodes Pressing on Nerve
5/2009 Begin Rx with Navelbine/Herceptin
11/09 Progression on Navelbine
Fought for and started Tykerb/Herceptin...nodes are melting!!!!!
2/2010 Back to Avastin/Herceptin
5/2010 Switched to Metronomic Chemo with Herceptin...Cytoxan and Methotrexate
Pericardial Window Surgery to Drain Pericardial Effusion
7/2010 Back to walking a mile a day...YEAH!!!!
9/2010 Nodes are back with a vengence in neck
Qualified for TDM-1 EAP
10/6/10 Begin my miracle drug, TDM-1
Mixed response, shrinking internal nodes, progression skin mets after 3 treatments
12/6/10 Started Halaven (Eribulen) /Herceptin excellent results in 2 treatments
2/2011 I CELEBRATE my 9 YEAR MARK!!!!!!!!!!!!!
7/5/11 begin Gemzar /Herceptin for node progression
2/8/2012 Gemzar stopped, Continue Herceptin
2/20/2012 Begin Tomo Radiation to Neck Nodes
2/21/2012 I CELEBRATE 10 YEARS
5/12/2012 BeganTaxotere/ Herceptin is my next miracle for new node progression
6/28/12 Stopped Taxotere due to pregression, Started Perjeta/Herceptin
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Old 06-10-2011, 03:33 PM   #6
belle
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Re: Trouble swallowing while on TDM1

Sheila,

Thank you so much for the good tips. I'm afraid it really may be a stricture of the esophagus. Mom practically stopped eating:-( She received her recent infusion on Thursday. The doctor said she looks better (no more constant coughing and asthma-like shortness of breath while speaking are gone) and Pantroprazol should relieve the symptoms. If it doesn't get better this week we will talk to them about the esophagus dilation.

Our next CT scan is in 3 weeks. Halaven sounds great, we'll keep it in mind.

Thank you once again for the useful info.

Kind regards,
belle
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