love from kenya

christie · 07-15-2008, 02:05 AM

HI EVERYONE,

ITS SO ENCOURAGING MEETING SO MANY PEOPLE WHO ARE SAILING IN THE SAME BOAT AS ME, I KNOW WE ARE NOT ALONE, AND WE ALL CAN FIGHT IT OUT BRAVELY.

BECAUSE THERE SHOULD BE NOTHING LIKE GIVING UP IN OUR DICTIONARY. HOWEVER DIFFICULT IT IS, JUST TRUST IN GOD AND FACE EACH DAY AS IT COMES.

I AM 38 YEARS OLD, AND I HAVE 2 KIDS, A GIRL AND A BOY, 13 AND 11 RESP., LAST MONTH I WAS DIAGNOSED FOR STAGE 2 INVASIVE DUCTAL CARCINOMA, i just happened to notice a lump one day and i mentioned to my husband, also i had a headache which i thought was due to a fall in the bath tub, so my husband was concerned about that, so we went to meet the doc. On the examination table i happenend to mention about my lump.
he said indeed he could feel one , sent me for a mommogram immediatly.

I REMEMBER EVERYTHING IN A HAZE, THE MAMMOGRAM LED TO A BIOPSY, BIOPSY LED TO A MASTECTOMY OF MY RIGHT BREAST. i JUST HAD ONE HOUR TO DECIDE.

NOW THE IHC SAYS I AM ER-
PR-
HER 2(+3) POSITIVE

I HAVE STARTED MY FIRST AC CHEMO, AFTER 4 CHEMOS THEY WILL INCLUDE HERCEPTIN.

HERE IN KENYA , ONE DOSE OF HERCEPTIN IS COSTING ME 2500 DOLLARS, I NEED 12 OF THEM, I REALLY DONT KNOW HOW I WILL AFFORD IT BECAUSE RIGHT NOW I CANT.

BUT I AM TAKING ONE DAY AT A TIME, AND TRUSTING GOD WILL SURELY PROVIDE A SOLUTION.

I CAME TO KNOW ABOUT THIS GROUP IN ONE OF MY SEARCHES TO FIND OUT MORE ABOUT HER 2 . I HAVE BEEN STUDYING A LOT ABOUT MY SORT OF CANCER ON INTERNET SO THIS WAS THE MOST HELPFUL SITE.
THANKS TO YOU ALL.
I HAVE NOT YET JOINED THE CANCER SUPPORT GROUP IN NAIROBI, KENYA. BUT WILL DO SO AS SOON AS POSSIBLE, SO ACTUALLY I DONT KNOW OF ANY ONE WITH HER2+BREAST CANCER.
MY FAMILY AND FRIENDS HAVE BEEN VERY SUPPORTIVE , THEY HAVE REALLY STOOD BY ME. MY KIDS ARE HAVING THEIR FINAL EXAMS, SO I HAVE BEEN MUSTERING ALL MY STRENGTH TO REVISE WITH MY SON. MY DAUGHTER IS VERY INDEPENDENT IN HER STUDIES.
MY SON WHO IS 11, FEELS VERY INSECURE, HE FEELS I AM GOING TO DIE, I HAVE TRIED EXPLAINING TO HIM, BUT I DONT KNOW IF HE HAS UNDERSTOOD IT.
I HAVE A HOUSE HELP WHO IS REALLY HELPING ME, I THANK GOD FOR HER.
I WILL BE GETTING MY SECOND CHEMO ON 28TH, I HAVE CAUGHT A VERY BAD COLD, WHICH I NEVER USED TO CATCH BEFORE. MY IMMUNITY WAS SO GOOD, THIS CANCER WAS A REALLY SURPRISE.
BUT I DONT TAKE THINGS FOR GRANTED, I TREASURE EVERY DAY GOD HAS BLESSED ME WITH.
STILL GETTING USED TO ALL THIS,BECAUSE I AM THE FIRST ONE TO HAVE THIS IN MY WHOLE FAMILY AND EVEN MY WHOLE SOCIAL CIRCLE;
THANKS A TON TO YOU ALL. KEEP WRITING. because sharing is half the burden shared
LOVE
CHRISTIE

dhealey · 07-15-2008, 04:10 AM

Christie, Welcome to our site. Sorry for the reason you are here. There is a wealth of information here. These ladies are so knowledgable. I don't go to a support group because I don't have time with my work schedule, but this site has provided me with so much support during the last 20 months. It is good that you have alot of family support. Your children will be fine, they are just scared right now. The thing with children is they bounce back so quickly. Best of luck to you with your chemo. I am praying you find a way to afford your herceptin.

christie · 07-15-2008, 05:25 AM

thanks dhealey for the reply, i am really blessed to have this group. and also thank God for all my friends, so many are praying for me and my elder sister has been on my case more than me. My brother in law, my husband, my friends all have soooooo supportive.yes you are right there is wealthof knowledge in this group. keep writing debbie, feels nice.
love
christie

Mary Jo · 07-15-2008, 05:55 AM

Hi Christie,
Thank you for joining us. Such a pretty lady you are with an infectious smile.
I'm sorry breast cancer had to touch your life but it sounds as if your attitude is ready for the fight and you know the One who has your life in His Hands.

Christie, are you getting a Neulasta shot the day after your chemo? Are you receiving your chemo every other week (dose dense) or every 3 weeks? I received my chemo (also A/C) every other week (dose dense) and received a Neulasta shot 24 hours after to help build up my white blood cells. I never got sick and was able to stay on schedule for my chemo treatments because my blood work was always favorable. Just a thought for you to talk to your doctor about....if you are not receiving this.
Please come back and join us often.......never hesitate to ask questions or share your fears. We've all been their and understand totally. There is nothing better than getting encouragement and love from those who "get it!"
Love to you Christie and may God hold you close and surround you and your family with His peace as you journey down the road you are on. Also, I ask God to protect your body from your chemo treatments but to let the chemo do what it is intended too - to kick those nasty cells to the curb.

Love to you Christie,
Mary Jo

christie · 07-15-2008, 06:18 AM

Dear Mary Jo,
thanks for your encouraging note, i loved it and thanks for all the blessings. i am on AC once in 3 weeks. i did not get neulasta and i will surely ask the doctor about it. because in the first chemo itself i felt a bit low, i dont know what will happen in the 4th and 5th round, thanks for the tip. my surgeon didnt remove my lymph nodes , so now my chemo therapist say he will consider it as positive and put me on radiation also. my tumor was 3 cm with deep resection margin. 0.7mm from the margin. i am going to india just for a week to do some test , doctor there has suggested a PET scan, lets see if that will help in my lymph node status. keep praying Mary Jo. thanks for writing.

love
christie

Vi Schorpp · 07-15-2008, 07:31 AM

As already mentioned, sorry you have to be here, but you are correct -- this site is wonderful. Be sure to check out the search pull-down menu above and research as much as you can. Knowledge is power. When I was diagnosed in 2003, herceptin was not approved for early-stage diagnosis, and you are fortunate to have it with your treatment. I was on the A/C schedule and tolerated it quite well, although the effects of A/C are cumulative, so you may feel a little more tired as the treatments go on. I received my treatment on Friday, recouped over the week-end, and was ready to work on Monday, except for the last treatment.

I know how you feel being the first in your family and social circle to be diagnosed with this. I have 6 sisters and no one in my immediate or extended family has ever had this diagnosis. The truth is: The bad news is that you are Her2neu; the good news is that you are Her2neu because there is so much more available as far as targeted therapy.

Be well and feel free to ask all that you can think of with this board. They are terrific and a tremendous source of knowledge. Although at a distance, they'll never leave your side.

christie · 07-15-2008, 11:51 AM

hi schrop, thanks fr the reply, i never noticed the search pull down menu. i will start using it.... there is so much to learn still, i am really new to this group, not yet explored its potential. when will my hair start falling? i have hair which reaches down, nearing my waist. i feel sad to let it go, it seems i will loose my eyebrows also. is it true? i know i have to face it, i thought i was strong, but i dont know how i will be when it actually happens. sorry for showing , how weak i can become at times. you said the bad news is i am her 2 neu, what exactly will happen to me, or is proneto happen to me, please tell so i am prepared. thanks a lot. keep writing.
love christie

Vi Schorpp · 07-15-2008, 12:22 PM

When I said the bad news is that you're Her2, it's just plain bad news that cancer has touched you. At one time people thought Her2 was a more dire prognosis, but that is not true today. There are many good things at present and in the pipeline for Her2 diagnosis.

As far as the hair, yes, you will lose it, but you'll find that your hair does not define you. It's different not having hair, but manageable. I had a wig that was perfect, and wore others things I was comfortable with. The part about the hair loss that I wasn't prepared for was the eyebrows and eyelashes. Not a big deal eventually because you'll learn to pencil in lightly your eyebrows. I just wasn't prepared for it!

TriciaK · 07-15-2008, 03:18 PM

Christie, you are indeed a beautiful lady! I know how hard it is to face a diagnosis of cancer, as I have been diagnosed three times, and have been fighting it for 23 years! My last diagnosis was her2+ in 2004, and I am now in remission. (We call remission "NED", or No Evidence of Disease, and we say we are "dancing with NED"). So you see, you can keep fighting and keep on surviving. You sound like a very intelligent, spiritual, strong woman. It will not be easy, but you are joining a great many wonderful warrior women (and men) on this site, who are not only fighters, but are willing to share with you their experiences, hope, love and prayers. I know you will hear from many of them and learn a great deal to help you in your fight. Please continue to let us know how you are doing. Hugs, Tricia

Bill · 07-15-2008, 04:31 PM

Hello Christie! Welcome to the site. I'm sorry that you had to look for sites like this one in the first place, but I'm glad you found this site. It's a great group of women and men and please feel free to ask anything. We all have our weaknesses and we all have our strengths and it's only by helping each other and the Grace of God that we overcome our adversities. You can and will get through this. It's good that you have so much support. It sounds like you have a wonderful family. Please keep us posted. Warm thoughts and prayers for you and your family, Bill

Joan M · 07-15-2008, 06:01 PM

Christie,

Thanks for sharing your story with the group. You will find a lot of support and information on this site. You are in my prayers.

Best, Joan

sassy · 07-15-2008, 09:17 PM

Christie,

I am sorry that you have to join us under the circumstances, but you will find this a wonderful place to visit. Please come here any time you have questions, need support or just someone to talk with. There are many here who have walked this path before you and they will be happy to help you along your journey.

I will keep you in my thoughts and prayers. Please keep us posted and let us know what you find out from your onc and your tests.

christie · 07-15-2008, 09:31 PM

Dear Schropp,Tricia,Bill, Joan,

thanks so much for writing and encouraging me, its early morning in Kenya, i guess its night for you all, so i just logged on and i am replying to you all. thanks schropp for your advice, i know its sad cancer touched our lives, it has humbled me even more. I have lot of love for all God's creation and now its refining even more.

I will be going to India on the 18th of this month for a week , just to do some more tests, so maybe after friday i may not log on till 26th, but please please do keep writing, i will surely come back and check, any advice on what all tests and questions i can ask the cancer specialist when i am in India.??? Please do advice.

My kids will be here in Nairobi with my husband, i am going with my sister. please pray for them, tomorrow is the last day of their final exams, i will let you all know how they have Fared once their results are out.

tricia, bill,joan schropp,mary jo, debbie, please keep writing, i loved hearing from you.

love
christie

christie · 07-15-2008, 09:35 PM

thanks sassy, for your reply, i am going for my blood test today, my cold is bad, its very cold in Nairobi, its winter here, so my cold became bad, doc put me on antibiotic, i will keep u posted. God bless you.

let me know what i can ask the specialist in India, i am still very new to all this.

love
christie

Vi Schorpp · 07-16-2008, 07:50 AM

Alaska Angel posted the following information in the past. "If no one gave you this link, it may help you to understand what the standard recommendations are and where yours fit in:

http://www.nccn.org/patients/patient.../3_work-up.asp

I hope this is helpful.

We'll all say a prayer for your children, and for you. It's great that your sister will be with you. It's hard to digest a large amount of information and between the two of you you'll have a greater recall. Keep in touch and let us know how you're doing.

Vi

christie · 07-31-2008, 03:34 AM

hi everyone,

I am back from my trip to india, reconfirmed all my diagnosis made here in Kenya.

i just finished my second round of chemo, feeling quite sick in the stomach. hope i will feel better soon. i really dread going to the hospital. just feel like being at home with family and friends.

i have lost 98% percent of my hair, but i am managing well, thanks to God, quite encouraged by the nice wigs i got.

will this get worse,? i mean this sick feeling in the stomach, what should i do?

looking forward to your replies.

all the test didnt find any malignant cells in my liver, bone, lung, brain, spinal fluid, all is clear.

i thank god for that, its the chemo, which i am finding it so difficult. keep praying.

My kids have done well in their exams, they have come in the first two positions, i thank God for that
love
christie.

mts · 07-31-2008, 06:07 AM

Hello Christie-

So glad all your scans are clear... I know the worrying can be brutal on the spirit.
The chemo... well - you will be amazed at how much your body can tolerate. Stomach problems (if you mean nausea) can be avoided by taking anti-nausea meds. Especially before you go to get more chemo. Its all about timing and you can prevent a lot of the ill side effects if you pre-empt with meds. Take them before the chemo.
At this point you are probably beginning to lose some of your apetite. When you get to feeling better load up on protein and lots of water. Be very careful about getting constipated too. I did not know how bad constipation could be !!! Ask your onc for anti-nausea meds if you don't already have them.
You are already half-way through your chemo... later on, the Herceptin will be a breeze.
Hang in there !

maria

christie · 07-31-2008, 06:16 AM

Dear Maria,

thanks for the encouragement, when you said i am half way through the chemo, i felt good, but i have 6 of them more and 9 of herceptin. will it harm my heart, my pulse rate is very hight, 122/min. they did an echo, praise God it was fine. i am on anti nausea drugs but does not seem to be giving me relief, no appetite at all, been just nibling. i dont know what to eat... nothing is appetising, not even water...

love
christie

mts · 07-31-2008, 06:27 AM

are you doing dose dense chemo ?
maria

hutchibk · 07-31-2008, 07:37 AM

Hi Christie - Roche is the Genentech partner in Africa who handles Herceptin. I can't find Roche contact info yet for Kenya, but here's the link for S. Africa offices http://www.roche.co.za/index.php?men...&submenu1id=42, maybe one of them can help you get the info... You should find out how to apply and qualify for the Herceptin access to free drugs. Most Pharmaceutical companies have access programs. Perhaps your doctor knows how to find the Roche rep for your area who can help you...

Please keep us updated with how you are doing. Welcome to our powerful and big-hearted site! We are so happy to have you join us.