Another update on triciaK

TriciaK · 04-08-2011, 05:55 PM

I haven't been able to post lately, but wanted today to share an update and ask for suggestions again. You have all been so helpful and I appreciate you so much!
I am still struggling with my 4th cancer in almost 26 years. I thought I would get through it again as I did in 1985 ( right breast, double mastectomy);1990 (t9, t10 vertebra, no chemo, tamoxefen, diet, self hypnosis); cancer free for 15 years, then heart attack and discovery of her2 cancer in right lung in 2004, 5 months on navelbine and herceptin, then 10 more on herceptin alone.Had to stop because of heart, had triple bypass. NED for 5 years, until about a year ago when nodules were discovered again in the right lung. Tried repeating navelbine/herceptin combo first, but had bad reaction this time to navelbine, no chemo for several weeks, then tried gemzar and herceptin; broke out in a rash on my torso, plus vomiting and diarrhea. Waited two weeks, tried smaller dose of gemzar; markers went down again but worse rash returned; waited two weeks again, rash improved somewhat, tried xeloda and tykerb for 4 days, resulting in severe hives all over except for face, hands and feet. A dermotologist did a biopsy and confirmed that the cause was the chemo. Nothing topical has helped.I am still covered in hives. The itching is so miserable I can't sleep, and also have no appetite and frequently vomit if I try to eat.I saw my oncologist last Tuesday and he says we have to wait at least two weeks for the hives to hopefully let up before we try another chemo. The cancer in the lung is growing again and there is a spot on my liver also, so he feels we need to try another chemo, maybe halaven if possible. Each chemo I tried did result in dropping cancer markers, which rose again on herceptin alone, so my Dr. isn't sure the herceptin alone will work, which is why he wanted me to try the tykerb. I am not ready to give up but getting frustrated because of the terrible itching, no appetite, little sleep and feeling so weak. My immune system is so low that I can't go out even to church for fear of catching something like last month, when I spent about a week in the hospital with pneumonia.
You are all such an inspiration to me, and I know so many of you have gone through much worse than I have, so am hoping for any suggestions or experiences that may help us decide what to try next.The good news is that my heart is holding up fairly well, and my spirit is still strong. I know there are more options than there have ever been, if we can just find something that works for me. I have a wonderful husband and a large tremendous family all praying for me, and setting an example for them has always been important for me as matriarch. The thought has crossed my mind that maybe it is time to set an example of how to die gracefully, but I am stubborn enough to resist that thought as long as I can, though I have great faith and no fear of that experience when the time comes. For now I am not ready to give up and I plan to fight as long as it is feasible. (At least until I can finish my autobiography, which is about 2/3 done at this point.)
Thank you for your thoughts and prayers. You are all in mine.I value your suggestions, comments and experiences.
Hugs, Tricia

Mary Jo · 04-08-2011, 07:51 PM

Hi dear sweet Tricia.... You know....you were one of my first friends here at her2support after I was dx in 2005 (I think I first found all of you in 2006 though). Well anyway, I just wanted to say that although I have no suggestions for you I do offer you encouragement, love and my prayers. You are so very special to me and I have always been so encouraged by your strong faith and uplifting words. My heart feels bad for all you are going through and I ask God to please heal your hives and help you to be comfortable as you figure out what to do next!

I love you Tricia and know one day we will meet. :-)

Mary Jo

Sheila · 04-09-2011, 06:38 AM

Tricia
You are too much of a fighter to give up, and you have much life to live. So sorry the chemos are giving you a problem...amazing that the very drugs we need to keep us going can sometimes backfire on us. I was going to suggest the Halaven, but you need good white counts to be on it...it is the first chemo that ever slapped my white counts down too low. You will continue to be in my thoughts a prayers for a quick resolve and a chemo that will work on the cancer, not on your body. You are a cherished member here, and I want to see you around the write Volume 2! Much love and strength dear Tricia! Stay Strong.

PatE · 04-09-2011, 07:12 AM

Hi Trica,
You are such an inspiration to me, I just want you to know that I am praying for you.
As far as suggestions I can only offer what has worked for me. I was diagnosed Oct 07 but unfortunately a pet scan was not done before I had a double mastectomy and tram reconstruction in Jan 08.
My first pet scan showed a lesion on my liver, my onc wanted me to do a resection but I was scared of another surgery. I looked for other options and found Cyberknife. I had three treatments in August 08 and my liver has been clear ever since. I have read that Cyberknife can be very effective with lung mets too but of course you need to be evaluated by a Rad Onc who is treating patients with CK. Its very important to see a Rad Onc that currently treats with CK because others are not motivated to recommend something they do not profit from.
Anyway I used CK again in April 10 with a pesky spine met (L2) and that area is also resolved according to my last Pet. The wonderful thing about CK is there are minimal side effects. Please search CK, http://www.cksociety.org/
Please keep us updated, I know you will find something that works.

Jean · 04-09-2011, 07:27 AM

Tricia,
Please know that special prayers are being said for you.
You are just amazing - your endless energy and determination - of course you will get your bio done.
I have little doubt.

Rest and gain your strength...please keep us updated.
Love and Hugs,
jean

nitewind · 04-09-2011, 07:49 AM

My dear, sweet friend, let me start by saying, "I love you and I love your spirit". You say that everyone here is an inspiration to you, do you have any idea what an inspiration you are to all of us?

I wish I had something to offer you, advice wise, but God has been good to me and I haven't had to go thru as much as everyone else has, especially you.

I wish that I could meet you, my birthday buddy. I know that will happen some day but that day is a long way away. I hope you know that you are always in my prayers and I think of you quite often. I always look for your updates. I don't get her much anymore but when I do visit, I look for your posts first.

Love you buddy, and I'm praying for an answer for you.
Susan

Becky · 04-09-2011, 08:12 AM

Dear Tricia

You are such an inspiration to me personally. I have "cut and pasted" many paragraphs of many of your posts into a word document titled "Words of TriciaK" because some of the things you have said, I never want to forget.

I will make a treatment suggestion that you can discuss with your oncologist. It is abraxane (hopefully to be combined with Herceptin and/or Tykerb). Abraxane is the same active ingredient as Taxol but there is a huge difference in the way it is formulated that really cuts down on the possibility of allergic reaction. I will explain the differences.

Firstly, the drug active is very, very water insoluble so something has to be done formulation-wise to make an infusible solution. This is where the difference lies.

For Taxol - the drug is formulated with a surfactant (an ingredient that emulsifies water insolubles into water). The surfactant (aka emulsifier) for Taxol is a castor oil ethoxylate and it is this component of the formulation that most people are allergic too hence the steroids and benadryl that everyone has to take prior to infusion (the same is true for Taxotere - not the exact same active as Taxol but in the same family of actives as Taxol).

Abraxane, which I stated is the exact same active as Taxol, is slightly manipulated. They take the active and they chemically add sugar molecules (so the active molecule kinda looks like a comb). Sugar is water soluble so when they hydrate the active the sugar molecules pull the insoluble active into water - no need for emulsifiers as the sugar makes the active water soluble. No emulsifier - far less potential for allergic reaction.

Also, Abraxane can be used weekly (3 weeks on, 1 week off) so lower doses can be used. Also, in general, taxanes are better on the blood counts than other chemo drugs.

I don't know if you have used taxanes in the past but this might work for you. You might have used them and they didn't work for you - this I do not know but I wanted to make this suggestion to you to discuss with your medical team.

Many, many hugs and love to you.

TriciaK · 04-09-2011, 09:31 AM

My dear ,dear friends: I am so deeply touched by your posts! I can hardly see to type for the tears. Mary Jo, I have felt a special connection to you from the first. Your faith and sweet spirit shine through in every post you make. Sheila, You have been such an inspiration to me, especially the most recent thread started by your daughter. I read it first last night after not being online for a couple of weeks, and was so worried about you! Yet you take time to inspire me again here. PatE, I will look into the CK suggestion. It is something I have not known enough about to consider. Thank you for another option, it sounds like it has been perfect for you, and perhaps others will comment on it here. Jean, thank you so much for your encouraging and uplifting words! I especially like the matter-of-fact "Of course you will finish your bio!" How can I resist such a positive statement? Nitewind, Susan, Birthday Buddy, What can I say to you? You are so special to me, too. If I remember right, we share not only a birthday, but also the strange reaction we have both had to navelbine. I like sharing the birthday much better! Becky, as always your post is so full of practical wisdom. I have not known anything about abraxane until now, and you have explained so well I am really encouraged that it may be the one to try next! I actually will call my oncologist about it Monday, and talk to either him or his P.A. Both are very easy to talk to and have considered all my comments. I have quoted wisdom many times from this website! Thank you all for your posts today---I feel uplifted, loved and inspired to pick up my warrior's bow and face the enemy head on again! God bless you for your love and wisdom, and especially your prayers. I read all your posts today to my husband and he was so touched, too. Thank you, I love you all and I love having this wonderful website available. It is so much like a supportive family. I am so grateful to Joe and Christine for starting it, and to Christine and her family for carrying it on. What a legacy! Love and hugs, Tricia

Barbara H. · 04-09-2011, 11:07 AM

HI Tricia,
I too, as others have so eloquently stated, feel that you are a incredible inspiration to both me and our members. Your posts impart such immeasurable wisdom that is comforting and hopeful. I was so sad to learn that your recent treatment has not worked and that you developed allergies. Although Tykerb does cause rashes at the beginning, the rash did not itch and eventually disappeared. It's too bad that you had to try it with Xeloda, because now you don't know which drug caused the reaction. Having side effects or allergies can be frustrating. That was the reason I had to finally give up TDM-1 in spite of the fact that it was working. TDM-1 is a drug that might work for you, but it is currently difficult to get. It is very tolerable. My heart goes out to you, and I hope that you will soon be treated with a drug that work. There are targeted drugs in the pipeline that at some point will be available to us. Continue to keep that fighting spirit alive. We all care for you so much.
Fondly,
Barbara H.

ElaineM · 04-09-2011, 11:35 AM

Count me in your corner Tricia. I am here cheering for you too. I think Abraxane is definitely something to consider along with either Herceptin or Tykerb. You might also want to put Halaven or a T DM1 clinical trial on your "to do list" if the Abraxane doesn't work for you.
Definitely hang in there. Genetech will apply to the FDA to get T DM1 approved for everyone who is her2 positive and who can benefit for it in 2012. I think it has a good chance of being approved fairly quickly after the application, because of all the positive news about it coming out.
I wonder if you might consider seeing an integrative medicine specialist, a dietician or a naturopathic physician to help you with the drug related side effects? They can be of great help in helping us cope with chemo related side effects.
You have a special place in my heart and are definitely one of my role models. I have a lot of respect for you. You are one great lady !!!!!!!! Hang in there and keep putting one foot in front of the other. Hugs !!!!!!!

tricia keegan · 04-09-2011, 11:51 AM

Sending prayers and good wishes from Ireland here too Tricia, Sheila is correct in that you have far too much living to do and should never give up until you know its time, and obviously you'll know when that is, but it is'nt now or any time soon.

I hope you can find something to work well for you soon and look forward to reading that book!! xx

Yorkiegirl · 04-09-2011, 11:56 AM

Tricia you have been thru so much. I so admire the fight in you.
Prayers still continue for you.

hutchibk · 04-09-2011, 01:07 PM

Tricia, everyone has already said it for me! And Becky took the words right out of my mouth (except with a lot more knowledge) about Abraxane. My Oncs are big fans of Abraxane, and at a Mets Symposium I went to a few years ago at MDAnderson, there was VERY positive detail given by a couple of their researchers about it and many unexpected positives they had started to see while using it... which I wish I knew how to explain, but I would have to be a scientist, and it's obvious that I'm barely a tist, much less a scien-tist...

Abraxane is probably my next course of action if I wash out on T-DM1. Have you considered trying for the T-DM1 compassionate use program that many of us are in? I travel to the location in Denver, and there are other patients from UT who travel to the Denver location as well. Just another idea. You can click on this link and see if you meet the inclusion criteria...
http://www.clinicaltrials.gov/ct2/sh...%2F2010&rank=1

Please keep us posted!

Mary L · 04-09-2011, 01:44 PM

Tricia, you are such an inspiration to me. You have faced alot of obstacles but you kept on fighting this deadly disease we call cancer. I hope and pray that you are able to find the pefect conbination of drugs that will work for you. We need you here with us. I am a woman of faith and I pray for you daily. I would love to read your book when you finsih it. My family wants me to write one but my Hall of Hope picture and article were enough for me. I hope & pray that you are able to find the right chemo. Love & Hugs, Mary L

Lien · 04-09-2011, 02:53 PM

Dear Tricia,

Itching is horrible. I'd rather be in pain. I have pretty bad allergies and intolerances, so I was wondering if you could have developed an allergy for one or more of the additives or other compounds of the chemo regimens you tried. Have they tried to give you an antihistamine? Although that wouldn't work for intolerances. The chemo's might work if the other substances were removed from the mix.

Love

Jacqueline

Jackie07 · 04-09-2011, 05:16 PM

I was thinking about the same thing. Could you find an allergy specialist and see if there's a way to reduce the reactions from Tykerb? It seems to me if it has proven to work well, there should be a way to avoid/counter the allergic reaction.

TriciaK · 04-09-2011, 05:33 PM

I am so encouraged by all your thoughts and prayers and good wishes! After posting last night I had the best night's sleep in two months. I have no doubt your prayers contributed. I woke up at 3 a.m. itching terribly, got up and relieved the itch somewhat with a hairbrush--probably not wise but I was desperate! Then I sprayed an organic moisturizer I had been given at the "Look Good, Feel Better" workshop I attended several months ago inspired by Sheila'a description of one she attended. It worked better than the prescriptions the dermatologist had prescribed. I went back to bed and slept until 8:30 this morning. I really surprised and delighted my husband by poaching eggs and making toast for our breakfast---he has been trying to do the cooking since I have been so ill, and he is not naturally domestic. I have actually had an appetite today and have kept everything down---amazing progress!
On Tuesday last week my oncologist had prescribed 2 prednisone a day for 3 days and now 1 for 10 days, plus benedryl every eight hours, plus hydrocodone for the pain of the hives. Last night was the first night I had felt any positive response to those meds. It seems to be a good combination and I have hopes that we can get the allergy under control enough to try another chemo. The onc was pretty sure the severe hives were caused more by the tykerb than the xeloda, which troubles me somewhat because I may need to continue the tykerb if he is sure the herceptin is not effective now for me. I am really reluctant to give up the big H because it was so effective in 2004 and 2005.There is still so much up in the air, but I am feeling much more hope and confidence than I did when I posted yesterday, and I am convinced that your comments and prayers are very much a part of that. I will keep you updated on how things continue, especially as I talk with the oncologist and proceed with the next phase of treatment. Thank you, dear friends and fellow warriors! Love and hugs, TriciaK

caya · 04-09-2011, 07:11 PM

Tricia, glad you got some decent sleep last night. I can only add my prayers and best wishes that you continue the fight and feel better.

all the best
caya

Barbara H. · 04-10-2011, 06:33 AM

Good morning, Tricia!
I would agree with your inclination not to give up the Herceptin. Although the cancer mutates, I am sure that you still have cancer cells that are successfully being targeted by the Herceptin. It also no longer works alone for me the way it did when I recurred. However, TDM-1 worked for me, and as you know I am currently on Tykerb and Herceptin. I do not see how you can know which drug you were allergic to since you took two drugs. Xeloda is a a powerful drug, and it also can cause severe skin conditions. Once everything is cleared out of your system, I wonder if there would be a way to cautiously test the two drugs separately. Although the combination of just Herceptin/Tykerb is not FDA approved, this combination is supported by Oncologists at the Dana Farber.

I am also glad you were able to sleep. It makes a big difference and also promotes healing.
Best Wishes,
Barbara

sarah · 04-10-2011, 07:56 AM

Hello Tricia,
So sorry you're going through this. what drugs did they try to stop the itching? benadryl???
I had terrible itching with Taxol (not as bad as yours) but I ended up with open sores and they gave me cortisone cream - helped for a day, then was useless. Actually the only thing that calmed the itching was calamine lotion - something that no one thought to suggest! I still have scars on my arms where the sores were and I still suffer from periodic bouts of itching - think my skin may have become more sensitive, particularly to sunshine and water!!! I never tried the benadryl tablets but I did get the spray and that also helped me. Unfortunately the spray doesn't exist here and I have to ask friends to bring it in from the US for me.
I was also given an allergy pill "Aerius" which I think helped a little but really the benadryl spray and calamine lotion worked best for me. I lathered the calamine lotion on thickly!
I hope they find very soon a chemo that works well without such terrible side effects.
health and happiness
hugs and love
sarah