trying to help my mother

[daughter]

Hello everyone,
I just discovered this site few days ago. I was wondering if anyone has advice for me and my mom. She was diagnosed after mammogram in Aug 2005 at age 62 and had surgery soon after.They determined IDC, cancer was 15mm and was removed completely, margins clear but if I remember right, 19 of her lymph nodes were positive, so it was determined to be IIIa. Tumor was ER+ in 30% of the cells and and PR+ in 10% of the cells and HER2 +++. She received 6 chemo every 3 weeks by FAC protocol which she suffered trough pretty badly. I guess I should say that she lives in former Yugoslavia </ST1 and while they have good doctors there, they just don’t have money for all the new technology and medicine. She wasn’t offered a port, or neulasta, or hereceptin – they just don’t have it. Her WBC at one point fell under 100 and she had to be hospitalized. Her RBC were bad too and so were her platelets. I found out about neupogen shots prior to that on breastcancer.org support group, but they don’t give that either until is critical so I managed to buy them myself through a private pharmacy there so she took those after last 3 chemos. She couldn’t have radiation simultaneously because of her blood work but she did have 25 rads after she recovered a bit. She had pretty bad burns at the end and mouth sores for which I sent her Biotene toothpaste and mouth wash, Ulcerease even had one doctor prescribe what they call Magic Mouth wash, the recipe I was given by a lady in a support group.

My mom recovered slowly – had more energy and we were hoping she would come and visit us here in between 3 month check ups. Last week they found cancer on her lungs and her tumor markers went over 120. She is starting new chemo on the 9<SUP>th</SUP>. The doctor council ordered Taxane and maybe xeloda if that doesn’t work well. She will get it weekly this time. They still don’t offer herceptin. I am trying to figure out if there is any way that I can get it in the States and send it to her there. I am so scared and nervous about it. I see a lot of you that are taking it, call it a miracle drug trough all the side effects. I am scared that she is not getting it and I am scared if I can get it if they will be able to use it if that’s not a practice there yet. I am not sure that I can bring her to the States, she wouldn’t want to ruin us financially and I can’t stand to be so helpless. It’s hard for me to be there with her, and I feel terrible that I am so far away. I spent 3 weeks last year and while I enjoyed spending time with her I felt I was doing more good from here than there. I couldn’t even be on the internet – it was so slow. I have younger brother who also lives here and he is so angry that he is not able to help somehow. My mom has a family around her, my dad and my aunts jump in whenever they can. My cousins were big help but they all have jobs and families.
I also sent supplements to her cq10, ecxinacea chewables (she has hard time taking pills, especially large ones) and she’s been taking royal jelly, which she gets from the bee keeper himself not a pill. A lot of people overthere think it’s a miracle product, though I can’s say it helped my mom. I have a friend here who just passed the 5 year mark, her cancer didn’t have nodes involved and she fought not to have chemo, only radiation and decided not to take tamoxifen either. She is doing fine, she was so brave and lucky I might add. She said the royal jelly was helping her with her imune system during radiation. I know this is a long letter but if anyone knows anything that can help I would really appreciate it.
Thanks and keep fighting this horrible deasese.

[Joe]

There are several routes that you can take. An alternative to Herceptin is: Tykerb. I know there are several trials presently underway in Croatia and other places in Europe. Go to www.clinicaltrials.gov and search there.

If you Mom were to come to the US, Genentech has a SPOC program where they will give your Mom Herceptin either free or at a greatly reduced cost.

Herceptin must be refrigerated and carefully mixed, so it is doubtful if you could purchase it here and ship it to Europe.

Warmest Regards
Joe

[daughter]

Thank you very much Joe
I am not sure how to go about all of this. Do I contact centers in Croatia directly? Same for Genetech - how do I get to someone to talk to there?
I feel so dumb - I never had something this big on my shoulder, but I want to
do everything I can to help.
I would like to bring her here to be with me, we are in midst of
relocation to Jacksonville Florida and if there was a way that she can be
treated there it would be great.
You gave me a hope but I feel a panic in my head, I don't know how to think
straight at this moment.
Thanks again, I'll do reasearh on all this.

[Joe]

Genentech: https://www.spoconline.com/spoconline/index.jsp


GSK - Use the contact phone number for the particular trial that you are interested in.

Which country does your Mom live in, I could try and obtain a local GSK number for her.

Regards
Joe

[daughter]

Thanks again, she lives in Serbia and Montenegro. I already went on line
and they've had herceptin clinical trial in Belgrade which is no longer recruiting.
Croatia may be a possibility - they did used to be a same country but I am not sure how all is working now because of the war. I will definately look into it.
I found the spoc website also and I will call to see if they can do something
for her if I bring her here to live with me. She is supposed to start taxane
in just a few days and I guess I need to let her try that first, I just hope
that doesn't disqualify her for something more helpful. I also hope she doesn't
give up, becuse her initial reaction was - no more chemo.
I am not sure how we would cover the cost of doctor's visits and stuff.
If you are part of the trial does insurance take care of some costs or is
that just given to you as a participant? I am such a novice at this. I am so
grateful that there are people like you to help. I wish there was a support group near her so she can be a part of it too. People there are just told what to do, they don't dare question the doctors and there is no choice on it either, they tell you which hospital you need to go by your address. Last year
I was lucky I knew the patologist in the hospital she was beeing treated in
so he was telling me what was going on with her, she didn't even know it herself. This year she can't go back to that hospital she was reassigned to
another one. I am sorry I am venting like this, not many people here have
these kind of problems, but I know dealing with insurance providers here is not
fun either. I might have to leave things till Monday now in hope someone will
answer the phone for me. I will look more at these websites and see if
there is place that mom might qualify for some drug. Thanks again!!!

[Heart Sutra]

hello to you,

Joe gave you some good advice, and others here are more versed than we are to add information at this point.
We wanted to let you know that what you called venting is welcomed and is nothing you need to apologize for here. This can all be scary, and getting good solid information can be overwhelming. I can tell you that the support we've recieved here is second to none. The advice we were given by people who have experienced this longer than us has been invaluable. So, you are in a great place. Ask every question that comes to mind and never apologize for it. We were treated with such kindness, I'm sure you'll find the same.
We are sorry to hear about your mom, there is so much progress in treating this disease here in the states. You are wonderful for looking out for her, and that she has you is such a gift.
As far as insurance, you are right it is no fun, but here in NY public hospitals cannot turn away patients. There are always ways to get treatment,though the process is not always easy.
We wish you the best of luck.
Thank you for being here.

[daughter]

Thanks for your kind words. When I got Joe's response I was so excited my brain felt like on fire. I do hope I can get somewhere with those leads. I am scared that her doctors don't get offended if I bring the information. They can be good people but sometime you have to deal with their egos, like their job is not to help the patients first. My cousin talked to a doctor in a different hospital just to hear second opinion and he seemed annoyed and said how people read all kind of things, and how pharmaceutical companies spend a lot of money on their ads and they are not always good, and than patients come and argue with the doctors about their treatment. It made me so mad!!
I don't want to be the one to decide on her treatment I am not a doctor but
if there are better things available I would like someone to tell me about it
and tell me what is the right thing to do. I read about taxans and they seem
to help too. I am not sure what side effects are, as I am scared my mom will
give up if it ends up like last year. Maybe I can figure out if she can get
herceptin or tykerb after this therapy ends. It really is scary and I am
thankful that I can talk to someone while she can't.
Thanks again
Nina