Update
 

I haven't posted on what has been happening with me lately, so I thought today would be a good day to let everyone know what has been happening.

In August, my oncologist found that I had four tumors in my lungs and an enlarged lymph node.

I called a member of this board who is very wise about our type of cancer. We discussed Navelbine and Herceptin. She recommended I ask about the T-DM1 trial.

I did. My doctor was very excited about me participating in the trial. I told him my luck had not been too good during the last week.

Well, I was accepted into the trial, but I did not get the arm of the trial I wanted. I was placed on the Tykerb and Xeloda arm.

I have completed two cycles of the drugs. I had to stop two days before the first cycle was complete due to the reaction in my body. I did finish the second cycle without any problems. My dosage was reduced by 25% during the second cycle.

I had scans on Monday and got the results yesterday. One tumor is gone in my lung and the other four have shrank by over 50%.

I started my third cycle yesterday. I have noticed that some of the woman on the board are not taking as high of a dosage as I have been given. It will be interesting to see if they have to reduce my dosage.

I hope by me participating in this trial that the T-DM1 medicine will be approved soon. I went to a nutrition workshop offered by Genetech last night, and an oncologist that works with Genetch was there, and I asked her when she thought the drug would be released. She said, "2012." I told her the women on the HER2 board were very upset about the delay by the FDA.

I am worried about not getting Herceptin and taking my Tamoxifen. I do not know my estrogen level. I should know that next week.

My HER2 level was at 52 in August. It is now at 39. It will be interesting to see if it goes back into normal range now that I am not blocking my estrogen.

Amelia

Re: Update
 

Dear Amelia -
Thanks for the thorough explanation of your recent "travels with mets." The news is great - the shrinkage is significant.

Perhaps the dosages of Tykerb/Xeloda are higher for this trial? The numbers may have been set by the FDA.

Keep up the good work. When did they take you off Tamoxifen?

Re: Update
 

Amelia,

Thnaks for updating us, it sounds like this is working well for you and I'm so glad to read that.

Thanks to you and all the other ladies in this trial paving the way to help those tomorrow that may recurr:)

My good wishes this continues to work for you as well as it has so far!

Tricia x

Re: Update
 

Amelia,

Glad to hear the good news. Tykerb and xeloda have been a standard treatment for a while. I'm sure the treatment will keep the cancer at bay until TDM-1 becomes availalbe.

Thanks for sharing the valuable information. Take good care of yourself and keep us posted.

Re: Update
 

Amelia,

I am so sorry you are having to battle the giant again, but it does sound promising that you had such a wonderful response. Thank you for participating in the TDM-1 trial. Looks like this arm, although not what you wanted, is effective! I am so glad. Sending prayers and warm thoughts. You are a special lady, Amelia.

Re: Update
 

Hi Amelia
So glad you let us know what's been happening. I am really sorry you are back in the fight but glad your news is good. Hope fully T-DM1 WILL be available real soon. These ppl don't seem to understand that we can't wait
Hugs from across the pond.
Ellie

Re: Update
 

Amelia,
What dosage of tyverb/xeloda are you on? I am on 1250 mg tyverb and 3300 mg xeloda daily. I am not on a trial but its shrinking my lung mets too.

Re: Update
 

I want to thank all you for your encouragement.

Delaney, I am taking 1200 mg of xeloda twice a day. I could not take the 3300 mg a day. I weigh 128 pounds. I will have to check the tykerb. I take 5 pills a day. I guess it is 1250 mg.

When did you find your mets? How many cycles have you had? Are you able to work? How many mets did you have?

Do you have any suggestions on what to eat? Have you had any problems with your hands and feet? My mouth cracked open during the first cycle.

I wish the trial would let me take Herceptin with the other medicine.

Amelia

Re: Update
 

Hi Amelia,
I dont know my weight in pounds but I am 59 kilos. I did a clinical trial of tyverb only for one year, when I was considered 'early stage'. Had no side effects then. A few weeks after been taken off tyverb I noticed a 'spot' on my chest, this was biopsied, positive for cancer. CT scan then found more in lymph nodes and lungs. Am on my 4th cycle of tyverb/xeloda now. My hands and feet are cracked and sore, I wear latex gloves for housework and cotton gloves in bed. I find that compeed blister packs are good for my feet, its like getting a second skin and I can walk and exercise. Yesterday I got melt on the tongue immodium because I was so fed up of running to the bathroom. It worked. I eat bagels and bananas and pancakes, seem to tolerate them well. Am afraid to eat too much fruit and vegetables but plums seem to be ok. I dont work, was job hunting when diagnosed. Some days I feel really well and 'normal', other days I wonder why I should get out of bed. The xeloda has given me a red rash on my nose but aveeno cream and foundation cover it up. Hope you are doing well. Best wishes. I hope we will both be NED soon.

Re: Update
 

about your worry about not getting your herceptin and getting your tamoxifen

Does that mean you were taking tamoxifen before or not taking it now?

Tykerb works on the her2 receptor from the inside, whereas herceptin works on it from the outside. Herceptin may have other effects that have to do with the immune system (ADCC). Herceptin plus tykerb have even more ADCC effects than herceptin alone.

Treatment with tykerb alone in preclinical studies can lead to increase their numbers of estrogen receptors.

Were any of your mets biopsyable? It would be useful to know whether your primary and/or mets were ER+

If either were, Dr. Slamon feels Faslodex is a better drug for her2+ patients than AIs or tamoxifen, but it is usually only given if you have failed other antihormonal treatments.

Sounds like being on a trial they are not going to give you much leeway for other treatments (ruins the statistics)

The good news is that you are responding. The other good news is that you are gathering information in case you stop doing so so you can act quickly.

Hope some of this helped!

Re: Update
 

Amelia, it was good to hear from you. I am so happy to hear of the good results you are getting!
Take care and I wish you well.
Maryanne

Re: Update
 

Delaney, thanks for the update.

Lani, my estradiol level is currently 11.3, and it was 12.2 in August. They will not let me take the Herceptin with the Tykerb. I am hoping that my HER2 level will go down, now that the estrogen is not being blocked. He would not biopsy the places. My SUV level was high in August when he checked me. I wonder if my cancer is still estrogen driven? It still has to be HER2 driven because of my level being so high. I wonder if the vaccine is making my HER2 level high? No one at the University of Washington could answer this question for me. They still have not analyzed my blood work.

Glad to hear from you MaryAnne. Hope you have been doing well.

Amelia

Re: Update
 

Amelia
When I first started on Tykerb/Xeloda I was on these doses you are on but I became so sick with mucositis (severe mouth ulcers and severe diarrhea and vomiting) that I became dehydrated and was hosptalised twice. Tumour markers plumetted though. Dropped Xeloda to 3 tabs daily (I think) and Tykerb to 4 daily (1000mg). I found that managable. I was about 64kg when I started and weight dropped to 55kg a few months later owing to poor appetite and diarrhea. I gave up work soon after starting the Tykerb/Xeloda regime and admire those who can keep going.
I'm struggling to understand the interaction between hormones and the HER2 protein so really appreciate you raising it and the response from Lani.
Glad Tykerb/ Xeloda is working. Bring on the TDM-1 as well. So glad people are agitating about it.
Trish

Re: Update
 

I assume you mean that the vaccine itself being made with part of an extracellular domain of her2 would cause the serum her2 test level to appear artificially elevated or are you thinking there is some cause and effect that increasing estrogen levels in the blood would somehow downregulate her2 in the tumor. Am unsure of the former, but doubt the latter, but maybe I don't understand your question...

Re: Update
 

Lani,

Thank you for your response. I meant the vaccine itself increasing my HER2 levels. I am glad that my estrogen is still low.

I wonder how long it will take for it to start rising? I have been off the Tamoxifen almost two months.

Trish, if you have any suggestions about taking this medicine I would been interesting in hearing them. I am having to take at least one nausea pill a day.

Amelia

Re: Update
 

I think you are confusing tamoxifen's effects with AI's effects.

AIs decrease the amount of estrogen made, whereas tamoxifen acts like an imposter, sitting on the estrogen receptor and keeping estrogen from getting to it to activate it.

If your estrogen level is low on a blood test, it is may be the long term effect of the chemotherapy you took (I didn't read your signature so I don't know what else you got eg Gonado releasing hormone inhibitors etc)

Maybe I still don't understand...

Re: Update
 

Just wishing you luck Amelia! Ceesun

Re: Update
 

Thank you Cessun. I do not believe that I am going to be able to take this medicine at this high of a doseage.

Amelia

Re: Update
 

Amelia
I hope you are feeling better. I used anti nausea and anti diarrhea medication. After dehydration I had more complex electrolyte replacement but hopefully you won't get to that. I have been thinking of you and hoping things are easier.
Trish