Would appreciate prayers
 

I haven't been posting often but I check in when I can and remember you all in thoughts and prayers. Some of you know my current situation---after fighting BC for 25 years, I am now facing my 4th cancer mets. They are back in my right lung, her2positive; there is one larger nodule and many small ones. We've been watching them for several months as my tumor markers (ca27/29) have been rising steadily (132 in July). The original BC in 1985 was in the right breast, then returned to my spine in 1990. Then I was NED for 15 years, until tests after a heart attack in 2004 showed that the cancer was back, now in my right lung, and now her2positive. I had 15 months of herceptin along with 6 months of navelbine. Then my ejection fraction dropped to 30 and my onc took me off herceptin. I've had 5 pretty good years, except for congestive heart failure (under control with meds), another mild heart attack I didn't know I had that showed up on an angiogram in 2009 and various other health problems (a triple bypass in 2006, scoliosis from the 1990 spine mets, fibromyalgia, gall bladder surgery and so on). An echocardiogram a month ago showed that my ef is now 45-50, so my oncologist doesn't feel I should go on herceptin again. I had two chemo treatments with navelbine alone, and then stopped so I could go on a long-planned cruise in Hawaii with my husband and oldest son and daughter-in-law. It was wonderful, though I mostly just enjoyed a lot of peace and rest. after arriving back I had blood tests on Tuesday, Sept 5, and was scheduled to see my onc for results and to plan further chemo the next day. Instead I wound up in the ER with severe chest pain and difficulty breathing. I was afraid it was either another pulmonary embolism (I'd had one 2 years ago) or another heart attack. After a long day of tests and treatments, it looks like it isn't a PE, and although my heart tests were worrisome enough to do an angiogram, it wasn't a heart attack. In fact my caradiologist told me in the cath lab that there was actually some improvement over the 2009 angiogram. He also did a carotoid artery echo and a regular echo with contrast. THe hope is that my ef may have risen enough so my onc will prescribe herceptin. I see the cardiologist Monday and the oncologist on tuesday and should then know what to do next. I feel I want herceptin, even though my heart is not strong. I am asking you for thoughts and prayers and any advice or experiences you may have. I question whether anything but herceptin or tykerb can stop the BC now. (Can't swallow large pills and have a power port so prefer herceptin.) I will keep you informed. Thank you so much for all the love and caring you have shown me and for prayers and suggestions now. Hugs, TriciaK

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Dear Tricia,

You have always been such an inspiration to me. You demonstrate such courage and always such a positive attitude. I always enjoy reading your posts.

I don't have any advice, as I've never had to deal with what you are going through. You are a wise lady and I know you will figure out what is best, and I'm sure others will have some great advice.

I just wanted you to know that I'm keeping you in my thoughts and prayers.

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Dear Tricia,

I'm sorry about this latest setback. You are strong and will be able to ride through yet another storm with flying colors. Not sure what to say in terms of medical advice, except that if I remember correctly, Herceptin can be given when the ef is 50 and above. You are on the borderline, so I'd listen to what your medical team has to say. Have they offered you anything else besides Navelbine?

I'll be praying for you,

Marcia

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Tricia,

And the dosage of Tykerb can be adjusted accordingly:

DOSE MODIFICATION GUIDELINES

Modify dose for cardiac and other toxicities, severe hepatic impairment, and CYP3A4 drug interactions. The concomitant use of strong CYP3A4 inhibitors and inducers should be avoided. Please see complete Prescribing Information.

Sending you good vibes.

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Tricia; You are in my thoughts and prayers that you to continue on a positive course. Your personal story has given me great hope and inspiration. I am routing for you.

Kris...

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Tricia,

You are in my prayers and thoughts. I wish everything turns out to be OK.

Julie

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I had a friend forward on the articles about troponin and herceptin cardiotoxicity

Hope they help!!!

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Tricia,

Saying prayers for your heart to become stronger each day. I am very hopeful that you will be able to have the herceptin txs needed to beat the beast back.

Lexi

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tricia
You have my prayers and good wishes that your heart will become stronger then you can start herceptin again.

Ellie

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Yes. By all means a prayer is coming your way from me.
I also have my fingers crossed for you. You are definitely one of my role models, because you have survived breast cancer more than 25 years even though you have had other health problems.
Tykerb pills can be cut in half with a pill cutter that is available at most pharmacies.
I also wonder if a person can put the number of pills prescribed after they are cut into a small food proccessor or blender with some warm water and liquified?
They are not supposed to be taken with food, but if they can be cut and liquified that might make it easier to take them.

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Tricia,
Have they considered low dose/metronomic Xeloda and/or Cytoxan? Has there been a recent biopsy to see if there are estrogen receptors or activity now? Metformin has low side effects and might help.

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Tricia - You are such an inspiration to me in the way you handle each hurdle. I pray that you and your doctors get a good and safe treatment plan in place for you now.

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Dear Tricia -
Was thinking about you and about to put out a "hell-o-o-o" to find out how your trip went.

That part sounds great, and exactly what you wanted.

The lung mets part is another story. I can understand your wanting to stick with the targeted therapies in light of your age and other health issues. You have managed so well all these years.

I am wondering if you could get BOTH Herceptin and a lowered dose of Tykerb as a two pronged approach. It seems to me that this idea with 2 drugs in combination and low toxicity would be your best bet to shut down these mets.

I don't know what you consider as "large" for pills. But I think Xeloda and Tyklerb are not very big. Your doc or his nurse will know the pill sizes.

Sorry for the "episode" with short of breath. But the flip side of that was all the tests that show that you can take more treatment.

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My thoughts are like Steph's.
Hey, could you mash up that Tykerb and take it in chocolate?????
We did it as kids, right???
I'm prayin' and believin' for ya.
luv, ma

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Dear Tricia,

I was so sorry to log on and read this news this evening, prayers are assured and you'll be in my thoughts daily my friend.

I know you're one tough lady and will get through this, I'm keeping everything crossed that ef will allow you herceptin or tykerb:) x

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Tricia, thinking of you. Just to let you know, tyverb and xeloda together are shrinking my lung mets, without herceptin. I have never had a steady run on herceptin because of my e/f.

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Tricia,

I am thinking of you and praying for you. It sounds like you have received some great options from other members to discuss with your doctors. I am hoping you will receive a sucessful treatment that is safe for your heart.

Delaney - it is great to hear the Xeloda/Tykerb combination is shrinking your lung mets.

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Hi Tricia,
My thoughts and prayers are with you. I have been using the Herceptin/Tykerb combo for almost a year now. My CEA is less than .5 and CA 27/29 is 18. This combination is very easy for me. I also take COQ10. You may be able to cut the Tykerb in half, but you can't grind it up or take it with food. They are not too difficult to swallow. The regular dosage is 5 pills, but I only take 4. I eat vegetables, salads, and fruit, and very rarely have bathroom problems. I couldn't deal with that issue since I teach, and it is often difficult to leave my classroom.

Unfortunately, you still need treatment. Some Her2 patients only take 3 Tykerb tablets. Perhaps you could do that, and with close monitoring also do Herceptin. A cardiac exercise program for your age group might also help.

Again, I hope the best for you. You will alwaysl be an inspiration to me.

Kind regards,
Barbara

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I am praying for you and sending healing thoughts
daily. You are such a fighter and I know you can do
this again. I am glad you got rest of your trip.
patb

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Tricia,
I'm sure sorry to hear about your trip to the ER. But it sounds like it may of been a good thing in the long run because you got all the medical test and procedures out of the way. You are well prepared now for your onc this wk...and I'm sure the articles Lani sent will be of help. I have a feeling your medical team along with your input will figure out your next step. With all you've been through I just know you will come up with the right course of treatment. Your such a strong warrior women and such an inspriation to me.

I will be keeping you in my thoughts and prayers.

Chelee