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Old 03-07-2011, 04:58 PM   #1
TriciaK
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Suggestions, anyone?

I am still up in the air about a chemo to go with herceptin for my 4th bout with cancer--it is her2 again and in the right lung. Herceptin and navelbine stopped it 5 years ago, with very mild side effects. Now I am having side effects--first to trying navelbine again, so had to stop that. Then we tried gemzar: no SE first time, but severe total body rash second time. SInce the markers did go down, we tried gemzar at half dose a third time, but the rash and terrible itch continued and haven't left after 3 weeks. I also have had to have blood transfusions last week. I will see my oncologist tomorrow and discuss what to do next. He wants to wait another week to try something else, even though the markers are rising again and the lung nodules are growing. He is suggesting either xeloda or doxil. I am unfamiliar with both, except that the xeloda is in pill form and I have a very hard time swallowing pills. Have any of you used either or both of these chemos? I would so appreciate any feed back about efficiency, length of treatment, side effects, etc. and any chemos any of you have had good results with. Am also somewhat confused about why herceptin alone isn't sufficient, since I tolerate that well.I was able to be on herceptin for 15 months in 2005/2006, even though I started it after I had had a heart attack. I had to stop after my ejection fraction dropped to 30. It is 50 now after several years on coregcr. The onclologist says as long as the ef stays at 50 or above I can stay on the herceptin. I had a triple bypass in 2006 and my heart is doing quite well. I would be so grateful for any suggestions or feedback from any of you. I would like to try halivan, but understand it isn't available unless I had had taxanes, which I haven't. Needless to say, I am getting nervous about the delay in finding something effective this time. I am 81 and much weaker than I have been, especially after being in the hospital for pheumonia this past month, but I am not ready to give up yet! Thank you for your feed-back and suggestions and good wishes. I appreciate this forum so much! Hugs, TriciaK

Last edited by TriciaK; 03-07-2011 at 05:01 PM..
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Old 03-07-2011, 05:21 PM   #2
Barbara H.
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Re: Suggestions, anyone?

Hi Tricia,
I know that we have discussed this before. Is there any way you could try Herceptin with Tykerb? The pills are not difficult to swallow, and 4 pills a day are working for me. This combination has been very easy for me. I have adjusted to the point that it almost feels as if I am not even on medication. It might be worth a try.
Thinking of you.
Barbara H.
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Old 03-07-2011, 05:23 PM   #3
Lani
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Re: Suggestions, anyone?

http://en.wikipedia.org/wiki/Doxorubicin

DOXIL IS AN ANTHRACYCLINE(SEE IT DISCUSSED UNDER LIPOSOMAL FORMULATIOONS IN THE LINK ABOVE) AND MOST AUTHORS BELIEVE GIVING ANTHRACYCLINES CONCURRENTLY WITH HERCEPTIN SHOULD BE AVOIDED--EVEN IN PATIENTS WITH HEALTHY HEARTS.

XELODA IS A MUCH MORE GENTLE TREATMENT AS I "LISTEN" TO THE FIND LADIES HERE AND CROSSES THE BLOOD BRAIN BARRIER, AND AS SUCH, MIGHT PROTECT YOUR BRAIN--WHICH IS A WONDER AT 81, DESPITE WHAT YOU HAVE GONE THROUGH.

I HAVE NO EXPERIENCE AND NOTHING MUCH MORE TO ADD, BUT MY BEST WISHES!

IT MAY BE HARD FOR YOU TO GET ON A CLINICAL TRIAL BECAUSE OF YOUR AGE (AGISM!! ) AND CARDIAC STATUS BUT PERHAPS SOMEONE HERE KNOWS MORE ABOUT THE REQUIREMENTS, LOCATIONS OF POSSIBLE TRIALS
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Old 03-07-2011, 07:18 PM   #4
Mary Jo
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Re: Suggestions, anyone?

Cannot offer any suggestions BUT did want to offer up my love and a cyber hug! Praying that God would make clear to you what should be your next move.

Love to you.....Mary Jo
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Old 03-07-2011, 09:56 PM   #5
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Re: Suggestions, anyone?

This link
http://www.healthline.com/goldconten...itabine?brand=
mentions that xeloda slows the growth of cancer cells. Maybe the pills can be 'crushed' into smaller pieces or powder form for easy swallowing?

Perhaps try mixing crushed pills with jello/pudding/juice to take away the bitter taste?
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Last edited by Jackie07; 03-08-2011 at 01:05 AM..
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Old 03-08-2011, 04:23 AM   #6
Lani
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Exclamation Re: Suggestions, anyone?

crushing many pills changes their rate of absorption which might allow too much to be absorbed at one time(the surface area of the pill changes which increases dissolution and absorption and many have coatings** that ensure only so much is absorbed at any one time).

when the active ingredient is a cancer drug there may be the possibility that this could be fatal

Be certain to ask your doctor before cutting and certainly crushing any pills

**Some of these coatings make sure the drug is absorbed in one part of the GI tract vs another ie, one with a more or less acid pH than another like a stomach vs somewhere further down the GI tract
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Old 03-08-2011, 04:26 AM   #7
Lani
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Re: Suggestions, anyone?

regarding Barbara H's post I think so far from preliminary information I heard at conferences, they have not so far found more cardiac issues with H+L vs H alone
but not that many people have been treated with the H+L combo so far so statistics are still few and far between and certainly no numbers of patients in your age range with your heart problems

Sorry this probably doesn't help much, but perhaps it helps you formulate your questions for your doctor.
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Old 03-08-2011, 07:35 AM   #8
Sheila
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Re: Suggestions, anyone?

Tricia
so sorry this is happening. xeloda and tykerb should not be crushed as Lani said... doxil can't be used with Herceptin, and even alone, is rather toxic on the heart, especially with your history. maybe your oncologist could give the Halaven even though you have not had a taxane. I would think so, it is not a trial where you have to meet guidelines.... I am hoping you get answers soon. I knowhow hard it is to be waiting for treatment to start. You are in my thoughts and prayers Tricia....hoping your answers come soon....you are such a role model for all of us.
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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 03-08-2011, 12:58 PM   #9
tricia keegan
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Re: Suggestions, anyone?

I wish I had some suggestions for you Tricia but do send my best wishes and love. x

As an afterthought, I know PDT therapy can be used in lung mets but not sure if this would be helpful to you, I'm currently having it for Bowens disease on my leg and the nurse happened to mention it's used to treat other cancers including the lung so thought it worth mentioning to you. I found this small section on treating lung mets-

Photodynamic therapy (PDT) often is used to treat inoperable lung cancer. Photodynamic therapy involves the injection of a light-activated drug (e.g., photofrin/polyhaematoporphyrin, lumin). Then, during bronchoscopy (examination of the airways using a flexible scope), the lung tumor is illuminated by a laser fiber that transmits light of a specific wavelength. At that time, the laser light is used to destroy the sensitized tumor tissue. Skin photosensitivity (light sensitivity) is a side effect of PDT.
The curative potential of PDT is the most exciting aspect of this therapy in lung cancer patients whose tumors are occult (hidden, unseen) on chest x-ray. The tissue-sparing effects of PDT may be particularly important for patients who have limited lung function.
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Currently taking Arimidex..
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Stopped Arimidex July 2014- Restarted Arimidex 2015 for a further two years on the advice of my Onc.
2014 Normal Dexa scan
2018 Mammo all clear, still NED!

Last edited by tricia keegan; 03-08-2011 at 01:10 PM..
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Old 03-08-2011, 09:35 PM   #10
ElaineM
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Wink Re: Suggestions, anyone?

I don't have any suggestions other than what the other members have written about. However
would you consider a T DM1 trial? I think several of our members where successful with T DM1 and a few members are currently in T DM1 trials.
Either you or your doctor can call 1-888-662-6728 or go to clinicaltrials.gov and type T DM1 in the search box to find trials near your home that might be good for you. If you type in her2 positive breast cancer you might find other trials too.
Hugs to you. You are great. Take good care of yourself.
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Old 03-08-2011, 11:42 PM   #11
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Wink Re: Suggestions, anyone?

I just remembered that if your doctor suggests Xeloda which are pills you might want to ask your doctor about 5 Fluorouracil. (5 Fu). I think Xeloda pills convert to 5 Fu in the body. 5 Fu is given through an I. V. or injection.
Tykerb is a kinase inhibitor. I wonder if there are other kinase inhibitor drugs that are given through an I. V. or by injection that might be appropriate. I don't know, but your doctor should know.
Good luck. Take good care of yourself.
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12 years and counting
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Lucky 13 !! I hope so !!!!!!
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14 Year Survivor
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Last edited by ElaineM; 03-08-2011 at 11:43 PM.. Reason: addition
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Old 03-10-2011, 12:21 AM   #12
Lani
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Re: Suggestions, anyone?

Elaine the tyrosine kinase inhibitors were developed specifically to be oral drugs

Generally the targeted bc drugs that are IV are monoclonal antibodies

It is amazing that they haven't made more IV forms of drugs available for those not eating. Until about a year ago there was no IV tylenol approved in the US, so hospitalized patients who were not eating who really didn't have much pain had to have morphine or something similar. The company that now makes IV tyelonol says it wants to make more drugs available in IV form, but that may be hard due to drug patent system
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