need info!

Lidija · 11-01-2006, 04:29 AM

Hello everyone

First I would like to apologize for posting this question. I am from Bosnia and Herzegovina. BaH is very poor country but with high percentage of patients with BC (every eight woman). My very good friend has BC. While I was reading your posts I realized that her oncologists and radiologists made many mistakes during her treatment although my friend was on herceptin, xeloda, had gamma knife etc. Now she is not feeling well, she is in constant pain. Three days ago she left hospital, her doctor said that he could not help her any more. She is at home now. Her children (daughter 10 and son 14) are watching her every day which is very sad and heartbreaking situation. My question is: Is there any drug which would help her to allay her pain and suffering.

I wish you all the best, very fast recovery and very long and happy life

Lidija

KellyA · 11-01-2006, 04:39 AM

Dear Lidija,

I am so sorry to hear about your friend. I know that it must be very difficult for her family and friends to see her suffer. What a good friend you are to be so supportive and involved. She is very lucky to have you. Unfortuneately, I cannot help you with any information on medicines or treatments. I am still very early in my journey have have limited knowledge of further treatments. I know that there are many people on this site who can help you and give you lots of information. I will be thinking of your friend and she will certainly be in my prayers.

Love,
Kelly

Shell · 11-01-2006, 05:43 AM

Lidija-

You are indeed a good friend, and no need to apologize to gain information - knowledge is power. Your friend did have some very advanced treatments, but it sounds like your friend has advanced disease, and there sometimes comes a point where the patient and the doctor realize the serious situation. At this point, there should clearly be a goal to make the patient comfortable, and the fact that your friend is in pain is very concerning. Over here, your friend might be in somehting we call hospice care, whcih is deisgned to give a patient comfort, and to relieve pain. Can you inquire whether medical professionals can monitor her, and control her pain.

Your second point, about her children, is equally heart-breaking. Our American Cancer Society and many other resources have a list of many books and videos helping families to cope, and many are directed to the different age levels for children also. While these books would be in English, I am hopeful that the American Cancer Society can direct you to an organization in your country in a native language. The website for the American Cancer Society is www.cancer.org.

Best of luck to you and your friend and her family.

Kind regards,
Shell

Joy · 11-01-2006, 09:55 AM

You are so kind to seek information for your friend. Where are her tumors and what is her treatment history, if any, aside from what you mentioned? In what ways is she not feeling well? Maybe we can all think about it more if we knew some of these things. Hoping to hear from you and so very sorry about this situation for all of you.

Lidija · 11-02-2006, 01:33 AM

Thanks very much for your responds.

She was diagnosed 2001, had mastectomy 12/2001, HER2 +++, ER/PR + after that chemo 7 rounds A/C and 30 radiation, few months later local recurrent (scar and neck), then 26 radiation, 1/2004 liver metastases, took xeloda/taxotere, started herceptin 11/2005 (only for 4 month), brain metastases 2/06, gamma knife 3/06; WBR 4/06, 7/06 again liver metastases. Now, she has very bad bone and stomach pain, and constant headache.

I use to translate some of your posts to her to see how brave you all are and that she is not alone.

Shell, I have found very interesting information on the American Cancer Society website about Palliative treatment. I am going to translate it and give her oncologist.

Thank you

Lidija

CherylS · 11-02-2006, 06:31 AM

Ladija,

You are a dear friend. I do not have anything to add, but would like to ask where exactly you live. My sister-in-law and brother-in-law travel to Bosnia frequently, at least two or three times each year and have many dear friends there.

God bless you.

Lidija · 11-02-2006, 06:55 AM

Cheril,

I live in Banja Luka. Are your sister-in-law and brother-in-law from Bosnia?

Regards
Lidija

vickie h · 11-02-2006, 09:52 AM

What a great friend you are. I have tears in my eyes thinking of your friend suffering and her children suffering as well. Is there anything at all I can do to help her. can we send cards, letters, aid in any way to her and the children? I am willing to do whatever I can to make a difference their lives, this is the time to do it. Is there another oncologist she can see for another opinion? Many Oncologists have widely varying opinions and follow starkly different paths when it comes to treatment. There are so many drugs she hasn't even tried yet that way well turn things around. My last Oncologist, just this past July, looked at the floor after receing a troubling PET scan and seemed to be throwing in the towel also. I left, cried in my car, prayed to God, and then turned my car towards home and new hope. I found 2 more opinions, another Oncologist and now 3 months later, my scans have come back clear, Please do not give up, pick up that towel laying there and be strong and loving and seek answers as you are doing. She needs people like you surrounding her. One man's opinion or belief is another's chance to begin anew. Look to the skies above, I will be looking there to, sending her my love and hope and stregnth. Please, PLease know that we are with her, we are her sisters over the seas, and our arms and hearts are open for her and her children. I will look forward to hearing from you soon. Believe. Love and peace, Vickie H

Tom · 11-02-2006, 10:24 AM

Dear Lidija,

It is so touching to see you search for help for your dear friend. We could all use friends like you in our lives.

I guess I am confused as to why it took so long for your friend to begin Herceptin treatment. I guess things are very different in BH, as we are sometimes spoiled by the medical treatment available here in the US.

Is there any mention of the new drug being tested called Tykerb? It is only now becoming available here in the US, but has shown great promise in HER2+ breast cancer. It is also effective in treating brain metastases. I don't want to give you false hope, but you could at least ask her oncologist about it. If she has bone metastases, the pain can be alleviated through the use of a drug called Ibandronate, or other similar drugs. Palliative care should be seriously investigated, as there is no reason she has to be in pain. I don't know if Fentanyl patches are used over there or not. They can help most pain situations.

Lastly let me say, that you might provide help to your friend by seeing that her children receive some sort of counselling through this difficult process. I am sure they are terrified about what is happeing to their mother, and fear losing her tremendously.

Please know that we are al praying for your friend, her children, and you as well. Perhaps you can read some of the posts from this site to let her know that she is not alone. I have no idea what your religious involvement is, but tell your friend to put her trust and worries in the hands of God, so that he may bear the greater burden of this experience. I think she will find great comfort in letting Him take control of the situation. God Bless you both and please let us know how things are going.

Sincerely,
Tom

heblaj01 · 11-05-2006, 07:40 PM

Lidija
I am surprised your friend's onc has not prescribed at least a bisphosphonate (such as Zometa or if not available Pamidronate or Clodronate) to reduce bone pain & perhaps contribute to fighting the cancer.
The Xeloda+Tykerb had a great percentage in response when Phase 3 trial results were reported at ASCO in June 2006, so good in fact that the trial was stopped & all patients who were on Xeloda alone were given Tykerb in addition to Xeloda.
The combo doubled the time to progression & reduced the incidence of brain tumors by 3/4 ( four cases in the combo group as against 16 in the Xeloda alone group).

Here is one case of Xeloda+Tykerb seen on this site:
http://www.her2support.org/vbulletin/showthread.php?t=25912

I also recall a recent post by a member of this forum who after multiple chemo & targetted treatments (including Vinorelbine+Herceptin) got a very good response to Xeloda+Herceptin+Zometa:
http://www.her2support.org/vbulletin/showthread.php?t=25770