love from kenya

[christie]

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]

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]

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]

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.http://her2support.org/vbulletin/images/icons/icon7.gif
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.http://her2support.org/vbulletin/images/icons/icon7.gif
Love to you Christie,
Mary Jo

[christie]

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]

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]

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]

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]

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]

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]

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]

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]

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]

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]

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 (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]

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]

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]

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]

are you doing dose dense chemo ?
maria

[hutchibk]

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?menuid=10&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.

[ElaineM]

Aloha,
Welcome aboard and greetings from Hawaii.
I wanted to mention that some drug companies have financial assistance programs for patients who can show financial need. You many want to see if the drug companies that make your medicines have those programs. For example you can go to http://www.herceptin.com and see if that company has a financial assistance program. You would have to request an application for you and your doctor to fill out and send to the drug companies.
Good luck and feel free to drop by this website anytime.

[Bill]

Hi Christie! I'm glad that you posted again and that your other scans were clear. Thanks for sharing the great news about your children. As for the chemo., I know it can be very rough, but you can get through this. Many, many here have been through the same thing that you are going through right now. Please come her with any questions that you may have, or just to whine and complain about anything you want to, if that helps. We are all in this thing together. As for the nausea, there are many different nausea medications out there. If what you are taking is not working, try to get something else. There is Emend (I think now it is even injectable prior to chemo), compazine, Zofran (tablets and quick-dissolving tabs), phenergan, maybe someone else can name a few more. One woman in our chemo. room used to suck on ginger drops and it helped her. Also, if you are not eating or drinking very much, dehydration can make anyone feel sick to the stomach. Maybe before, during, or after chemo., you should request an extra bag of IV fluids. That will ALWAYS make you feel better. And, last but not least, everyone has a certain time of day when they feel the best. Your time of day when you feel the best is when you should try to eat and drink. You need to keep up your strength. Eat many small, light meals throughout the day. One recommendation- avoid trying to eat your favorite foods while you are feeling sick, because after you get better, you probably will not want them anymore. Experiment with different types of drinks to find one that you can drink. After time, my wife, Nicola could only drink "Tang", an orange-flavored powder that you mix with water. warm thoughts and prayers for your comfort, Bill

[Jackie07]

Christie,

Herceptin alone actually causes less nausea than the combination chemo. The heart damage is a concern - make sure you exercise regularly. One of the members reported that she exercised to get her MUGA (or echo?)score improved to resume treatment.

'Emend' is a good antinausea medicine. I also used something called 'perchlocorasine' (?) while doing chemo. My experience is that my chemo treatment in 2007 (Taxtere, Carboplatin, Herceptin) was a lot easier than the one in 2003 (Fluoruracil, Epirubicin, Cytoxan.)

Remember, there is no reason to suffer from chemo these days. Talk to your doctor and oncology nurse so they can take care of any of your symptoms.

Take care.

[juanita]

This is a really good place for all your questions and concerns. I wish I'd known about this place when first diagnosed. They've helped me a lot since then.

[sassy]

Christie,

So glad that you updated us on how you are doing. Congratulations on your children's success!

Zofran or Emend are both good nausea meds. Just be sure to take your meds BEFORE you start feeling bad. You need to stay ahead of the nausea, its harder to deal with once you are sick.

I know you may not feel like eating, but try your best. You really will feel better if you stay well hydrated and eat semi-well.

You will make it thru treatment, and it will be behind you soon. Herceptin is a breeze compared to your initial chemos.

Keep us posted on how you are doing.

Keeping you in my thoughts and prayers.

[christie]

Dear Bill, Jackie,Sassy, Juanita,

wow! thanks for all your replies, i am taking all the advice you have said, i am taking Kytril(anti nausea
) early in the morning, so felt a bit better, as you said better to take the medicine before the nausea sets in. I also did the mistake of consuming juice all the time as i was not able to drink water, and now i cant stand the sight of any fruit juice. how is radiaton? does that hurt? how often is radiation given? i think i may have to go for radiation after my chemo.

thanks Bill for writing so much in detail, i am surviving on tangerines and apples, they make me feel better, and i add a dash of pickle to my food , that makes my food go in better. Hope i will get over it soon.

i also find tender coconut water very refreshing, its supposed to wash away the toxins, so i am drinking that,

i am on AC chemo, what does dense dose mean?

thanks to you all for the advice, keep writing, i love to hear from you.

love
christie

[christie]

Dear Elaine,

thanks for the advice, i will check with Herceptin.com and find out if they can offer some help. i didnt know that they do offer some assistance this way, thanks a ton dear elaine.

love
christie

[christie]

hi hutchibk,
i dont know your real name, but none the less , thanks for the advice, so i must contact roche representative here in Kenya? ok let me ask my doc to get some details for me...i must apply and try, God willing i can get access to it. thanks a ton for the help, will work on it right away.
keep writing.
love
christie

[sarah]

Christie,
Contact genetch the maker of Herceptin and see if there isn't a way they can get you the drug at a lower cost or help in some way.
It's shameful that cost should be a question in healthcare.
hugs and love
sarah

[Gerri]

Hi Christie,

You are asking all the right questions of the right people. We have been through this and are here to help.

Dose dense chemo means that you are given it every two weeks. I had A/C that way and then taxol and did fine. I never really got sick but felt a bit queasy at times. When I started feeling that way I would eat saltine crackers and drink Sprite or 7 Up. It made me feel better to eat small meals. Of course I made sure to take my meds to keep ahead of the nausea.

Radiation is not painful in itself. Since it is done 5 x week for 6 weeks the skin can burn and that can be painful. I am very fair skinned and did not burn or even turn red. After every treatment, before getting dressed, I put pure Aloe on my skin. I did it several times a day and it kept my skin from burning.

You are doing great and have a very postive attitude. You also have the love and support of your family to get you through, and of course, all of us here.

Take care,

[Bebol]

Hi christie,
I found this thread quite similar to the other one I posted in. But I see it seems more fun here with so many replies and comments. ;-) You'll definitely be blown away by the encouragement!

I read earlier that you get your chemo every 3 weeks. That was also what I had when I got my chemo in the Philippines. When I did the Taxol here in the US, I got to do the "dose-dense" which is every 2 weeks. Dose-dense means shorter intervals between chemo. It seems to be the standard of practice here because it improves chances of survival, too. But we need to be supported by Neulasta to do it (which they also didn't give me back in my country because it was very very expensive).

Be well!

[christie]

Dear Bebol,

yes, its the same christie, i replied to you on the other thread, i will copy and paste it here also,

this is the first time i got details about radiation, thanks dear. when i heard the number , 35 rads, i wondered how anyone can tolerate it, but you made me calm by explaining about it. you know here in Nairobi there are only two machines for radiations and that also they are faulty, so most probably i have to go to India for it, i was wondering how long can i stay away from home? but if they do it daily, it sounds fine, i can finish it in a months time and be back to Nairobi, i dont want to leave my kids and go to India for long, but if its for a month , then i can go with my family. It really encouraged me , thanks.
love
christie

[christie]

Dear Sarah and gerri,

thanks for the advice, there is so much i can learn from you all because only a person who has gone through this can explain the best, sometimes i feel even the docs cannot understand exactly what we are going through.

i was scared to drink seven up or any fizzy drink, fearing it would effect my health, but that is the only thing along with tender coconut water which is giving me relief.

will adriamycin and herceptin eventuallly hurt my heart????

i trust God will see me through , the way he has been doing till now. I will contact Gentech and find out if they can help me. thanks

love
christie

[hutchibk]

Christie - just for clarification - Genentech and Roche (I think Roche owns 51%) are partner companies. From what I have found, Roche is who represents Herceptin in Africa. But your doctor should know. Just ask him.

[Patb]

Christie
With the Chemo you are taking and the Herceptin
you should have a muga scan or echocardiogram
every three months to check on your heart. Most
people do fine but they need to keep a check.
Best of luck with your treatment and keep us posted.
Take care.
patb

[juanita]

my muga scores actually went up so it doesn't always mean it will harm your heart. and radiation was a piece of cake, i just looked like i had a really good tan soemwhere that is usually very very white.

[harrie]

Christie,
Thank you for your info and moral support on India. I really appreciate it.
Radiation for me was a breeze. I don't remember feeling hardly any side effects. Did the tx on my lunch break and continued to play soccer in the afternoon.
Well, only 2 more AC treatments for you to go! Hang in there and know the side effects are temporary and it is all worth it in the long run!! Dont be surprise if the effects get a bit more towards the last of your txs due to the buildup of the toxicity, but it will all be behind you before you know it.
It has been a bit over a yr since i finished chemo and I am back to being my normal (abnormal) self!
Did you get a MUGA or ECHO yet? I am pretty sure I had one early on as a baseline. I could possibly be mistaken though.
I know for sure I had a couple afterwards for sure.
Take care and know we all have you in our thougts.
Maryanne

[christie]

Dear Maryanne,

thanks , just wanted to ask you, i have to do 6 more chemos, will it be worse than these first 2? today i am feeling better, didnt feel nauseated, but the next few chemos will they be bad? please tell how you felt and when did you actually feel worse?

yes, i have done 2 echos, they were normal. though my pulse rate is very high.

love
christie

[harrie]

Christie,
I did not have the AC, thats what you are on, right? I could tell you bout my experiences, but I will tell you instead of my very good friend that just had AC, 4 rounds, less then a yr ago. She is in her early 40s. Anyways, she did REALLY well, surprisingly well. She worked, still ran, still surfed throughout all her txs. The last tx was the worst and it kept her down for about a day and then she was fine. She thinks she overdid it with all her activites and that might have been partly the problem.

With me, I had 6 rounds of TCH. (taxotere, carboplatin & herceptin). It got progressively worse by round 3, 4 and by 5 and 6 it kind of plateaued. Even at its worse, it was still manageable and I still worked full time but just took it easier then I would in "normal" life.
I think it would be safe to say the everyone has different reactions. In retrospect, I could best summarize mine as side effects getting progressively more intense as txs went on, but throughout all 6, was not fun, but very manageable.
Hope this helps.
Take care Christie.
I am so glad you are here with us. It is such a pleasure to know you.
Maryanne

[christie]

thanks maryanne, you are such a sweetheart, always there to encourage me, i just wanted to be prepared for rough days ahead, since i am the care giver in my family, i wanted to be prepared if i am going to find it rough ..... so i can train my house help accordingly and also make my kids quite independent, I am already working on it,,,,,,

love
christie

[christie]

thanks Patb and juanita,

at least my fears of radiation are laid to rest, you all are so helpful, thanks a lot
love'
christie

[naturaleigh]

Christie,

First let me say what a beautiful country you live in, I visited there in 1989 and hope to return one day. Of all the places I visited Nairobi was my favorite.

What I did to help me drink water was to put lemon or lime juice in it. The lime juice also helped give food a good flavor. You need to drink all you can but if it gets to a point where you can not drink at all, ask your oncologist about receiving fluids. That will make you feel better in no time.

Be sure to get you a hat for the cold nights in Nairobi, it is amazing how much insulation your hair provides for warmth. A hat at bedtime really makes a difference!!

Remember, the hair WILL grow back! I actually liked mine better with the "shaved look" and have thought about going back to keeping it that way.

You are a trooper, and will be fine!!

[harrie]

Christie it sounds like you are doing so many proactive things to make your life in order while you undergo your treatments. Good for you! I am sure things will fall into place nicely for you and you will look back and be so glad that you completed all that you did.
Maryanne

[christie]

Dear Anita,

your case sounds just like mine,the only difference is my surgeon says my nodes were negative, he never removed them, now my chemotherapist says since they were not removed he will consider them positive and put me on radiation as well, anyway since being her2 its better we dont leave anything to doubt.

yes, Nairobi is a beautiful place, you must visit it once more, specially you must visit Masai Mara, mount Kenya, its beautiful.

you are right about the cold nights in Nairobi, even the days are equally cold, i cant do without a cap, i bought several woollen ones, really now i have realised how important hair is .

thanks for your message, its so nice to hear from you. i am so happy with the wigs i got, gives me a new look and everyone liked it, i dont know when my eyebrows will fall off, but i have a eyebrow pencil ready. my daughter gave me around 10 inches of her hair for my wig,and also my sister, so i have a wig of natural hair, its nice.
keep writing.

love
christie

[christie]

Dear Maryanne,

i get very restless when things are not in order, i think i should learn to relax,but an orderly house gives me peace of mind. if i know that wardrobe is not in order or the children study tables are not in order, i cannot even have a nap, the thought will keep nagging me, only when the house , kitchen , store, or even the refrigerator is in order and kept the right way , i can relax. thats why i am preparing right ahead of time, i can teach my house help to take over when i am not well and kids can do lot of work on thier own.You all have helped me so much in taking things in the positive way, thanks.

I am 100% sure God has healed and I am praying for you all also, the one who has created us knows our body the best and we must completely surrender our bodies to him,

love
christie

[naturaleigh]

I hope you are feeling well these days and have lots of help to cook you some meals and help with your house chores. Don't forget to drink as much as you can so you do not get dehydrated. Be sure to take care of yourself!!
I can't tell you how much a loved your country!! I went on a safari trip with our local zoo. Kenya is such a magical place and my experience there took me far beyond my wildest dreams.
We went in January, which is your summer and the dry season and unfortunately , before the great migration. That is something I would love to experience.
The days were hot but very bearable and the nights were cold. Everywhere we went the natives there would build a bon fire to help everyone stay warm. That was the most awesome experience: the sky was so black because there were no city lights to help illuminate the night. The only illumination were the stars that were so bright and looked so close, it felt like you could reach up and touch them!!

Our first place was Nairobi where we visited the Ngong Hills which is where "Out of Africa" was filmed. The next day we drove to Amboseli. Our first day we saw several herds of elephant, zebra, 3 cheetahs, 2 lions (which they said we would not see there) and 2 black Rhinos and heard the wonderful laughs of the hippos! We spent most of the day getting stuck in the mud do to all the rain!! It's dry season!! Go figure!! The bad thing about the rain was that we just got a glimpse of Mt. Kilimanjaro but what a beautiful glimpse it was!

We also went to Samburu and got a perfomance of the wonderful Samburu trip dance. Was able to see the Reticulated Giraffes, and the always whimsical verbret monkeys ,along with several Nile crocodiles!! We were able to experience the wonderful laughter of the hippo again, UH, huh, huh, huh, huh.

We also went to Mt. Kenya, the days were clear and sunny there, so got excellent views and pictures of Mt. Kenya.

We ventured to the rain forest of the Abederes with the Colobus monkeys swing and hollaring from the trees. We spent the night in the Ark where we had hoped to see the Bongo. Unfortunately we did not see it, but we were visited by many other animals including the giant Forest pig!!
We went to Lake Nakuru where the lake was pink from the millions of flamingos. This is where we saw our first hearty beast!!
Our last stop was the vast open savannah of the Maasi Mari. This is were one of the safari vans (from another company) had a flat tire. We were getting ready to help him until we looked at the huge rock a few feet ahead of us and saw a large herd of lions!! Several vans had to surround the one so the tire could be changed!! This was the first time I had ever heard of a Topie. We watched the female lion chase her down, as she jumped on the Topie, both flipped in mid air and somehow, I was able to get in on film! I had a hard time watching that, but she was doing what the Lord put her on this earth to do. Later, we found out that she had her own pride of baby lions to feed.
Our last day before we flew back to Nairobi, we were able to say our farewells flying over the Mara in a hot air balloon. When we landed we were treated to a wonderful champagne brunch slap dab in the middle of this vast wilderness!!
gorgeous county, I so hope to return again one day!!

[harrie]

Anita, WOW what an AWESOME trip you had to Africa!!!
Maryanne

[christie]

Dear Anita,

its amazing how much in detail you remember about your trip to Kenya. I must say i am impressed.

you said you visited in 1989, wow, you are wonderful, it seems you visited it just the last week.

Nairobi has really developed now, inspite of that, the wild life is untouched, the number of animals has increased so much.

when you go to Masaai Mara during the season, you can see miles and miles of wildbeast, zebras, just walking in lines, sometimes you can see a stampede.

yes you missed the migration, the great migration, you must come back to watch it.

in Masaai mara , you must have noticed , miles and miles of grassland without even a single tree, specially when it rains , its the most beautiful sight. when lightning strikes, you can see it right from the sky to the ground. we had gone on a night safari, its wonderful

i love to watch the animals in the rain, they just stand still, i wish i could also stand out and just stand still in the rain along with the huge elephants in total silence and cry my heart out, (I FEEL LIKE DOING THIS WHEN I AM SAD)you know its therapeutic.

on the whole its beautiful beyond words...specially if you like wild animals.

you must visit Tanzania also. the Ngorongoro crater is amazing, plenty and plenty of animals. also not to miss Serengiti National Prk.

Maryanne you also must plan a visit to Kenya. wish i could meet you all.

lots of love
christie

[Ruth]

Christie ~ I want to go to Kenya now! What you have described sounds fantastic and as a HUGE animal/nature lover I want to see the migration.

I haven't said "hello" to you yet and wanted to welcome you into our little group of amazing women and men. I go through phases of reading daily posts and then not coming by for a few weeks so I missed your initial posts. I'm sorry that you are going through this but always know that you are not alone.

My husband and I have 5 children; two 14 year old boys, 11 year old boy, 6 year old girl and 5 year old girl. Please contact me if you ever want to talk about kids and treatment. My oldest was 9 when I was diagnosed and it was a tender age. He was frightened too.

Many big hugs ~ Ruth

[ElaineM]

Aloha,
It sounds like you are getting good medical care. We are happy about that. Be sure to take good care of yourself at home too. We are all cheering for you.
What wonderful descriptions of Kenya !! I enjoyed reading about Kenya very much. I think many of us want to visit Kenya by now. Kenya may be in the history books in the U. S. someday. The father of one of the candidates for U. S. president was born in Kenya and attended the University of Hawaii.
The candiate himself (The U.S. residents know who that is by now.) was born in Hawaii.

[christie]

Dear Ruth and Elaine,

thanks for your notes, i feel i have an extended family now. yes you all are welcome to Kenya, also you will enjoy the Maasai Markets, they make such beautiful things from tiny beads, Kenya is a heaven for beaded jewellery, you will be amazed at the variety of things made from bead, leather and sisal. i have a long scarf to put on my neck made of hundreds of tiny beads, so many strands of beads , the maasai ladies make it and it looks so delicate.

i am sure you all will like it.

ruth, i am so happy to hear about your kids, were the first ones twins? you are so lucky. i wish you would post me a picture of your kids.

love
christie

[harrie]

Christie, it is most interesting reading about the beautiful world over there in Africa. I also LOVE jewelry with beads. Beads and stones...my favorite!!
The way you and Anita have discribed Africa, it sounds like such a healing kind of place. It sounds like a place where a person can totally feel one with the world. To me that is very good because I feel like my life is just a part of the universe. Don't laugh cuz I know that must sound very yoga-ish, but i do believe it is true.
.....just ask Andi!! LOL!!

[naturaleigh]

Maryanne,

I do believe that Africa is a healing place. I know that every country is God's country, but you can truly feel his presents there. When I went in 1989 and stepped off that plane, I never felt like a stranger and it was if that is where I was supposed to be. I decided as I was there, that this is where my final resting place would be. Their way of life is so down to earth and unhurried. "There is never any hurry in Africa", that is what our tour drivers would say every time something did not happen as it was supposed to, which happens often in Africa!! That is part of it's magic .

At the Mari the only trees were the lone Acacia Trees. One of my favorite pictures is of two giraffes spaced perfectly apart with the Acacia tree in the middle, one walking away from the acacia tree and one walking towards the tree.

I did not buy any of the Maasi women's bead work, though they were beautiful. I did buy a picture of giraffes made from bananna leaves, and a few animal figures made from soap stone. I passed up so many things up that I wanted to buy, like the bead jewelry so that I could buy a tanzanite ring which comes from Tanzania. My next trip there I do want to go to the Ngorogora crater.

I promised my nephew I would take him there one day, I just might have to make it soon!

[harrie]

After reading these posts, it has given me the thought that maybe I might like to see Africa someday too.
Something I had never considered before.

[Sheila]

Christie
Like others, listening to you describe your country makes me in awe of the beauty I have never seen...there are a few places I would like to see in this world, one has always been Egypt. My brother in law is from Alexandria, and a brother and sister still live there...I am enchanted with the pyramids, the camels, the history...my sister and their daughters Nadia and Zakia have been, maybe someday I will go. Like Kenya, I am amazed at the beadwork and intricate jewelry that is made by artists on the street....and you also have the benefit of all the animals that we can only see here in a zoo....
Welcome to our group Christie, you will find unending love and support and women who are so full of knowledge. If knowledge is power, we will conquer this disease.

[ElaineM]

Aloha,
I would love to see Kenya and the rest of Africa someday too.

[madubois63]

Christie - I would like to extend a warm welcome here. It's a terrible reason that your here, but you found a great place to be!! You've gotten a lot of good advice and I would like to add some more...Just when you think your not going to loose your eye brows and eye lashes, they will fall out. The AC builds up and has a residual effect, so after your done taking the AC on on to the Herceptin that is when it will fall out. It's not the Herceptin. Herceptin is not a chemo, and you will find it very easy to take - no nausea. As for the nausea you are experiencing now, ginger is great. Drink it as tea, pickled ginger like you get with sushi or hard candies. Licorice also helps. It comes in tea form or eat it like the string. We have "Twizzlers" that are very sugary. Try to get the most natural licorice possible. Try sherbet, ices or sorbet. Lemon drops help too. Stay away from garlicky and spicy foods. Try chicken soup, plain pasta, jello, apple sauce. Think of what they would serve you in the hospital after surgery. Day three after the chemo was always the hardest for me. Radiation doesn't hurt, but your skin may get tender and burnt at the end. Use the aloe gel as recommended by someone else. If you start to get burned, ask the docs for cream. Someone else can tell you the name. I can't remember. It's been nearly 9 years since I had radiation. If I were you, I would definetly go to India for the radiation. You said the machines in Kenya weren't so great. The radiation can nip your lung and cause breathing problems later on, so the newer the machine the better. Wear light cotton clothing and camisole tops instead of bras for comfort. Drink lots of water/fluids throughout the radiation too!! Check out your local Cancer Society. Ask how they could help you. We have the American Cancer Society and they helped pay for pain medications, babysitting while I was in treatment and they reimbursed me for travel to and from treatment. Also, check out
http://www.heavenlyhats.com/ They will send you free scarves and hats. It's fun to get a surprize package!! Keep your spirits up and keep laughing!! It truly is the best medicine...God luck and God bless - Maryann from Long Island, New York

[christie]

hi Dear maryann, harrie, shiela, elaine and Anita,

you must combine Egypt , Kenya, Tanzania and Uganda, Rwanda. these places are really beautiful. yes tanzanite is a very precious gem mined out only in Tanzania, its lavender in colour and the darker the shade , the more expensive it is.

In Tanzania, along with Serengiti National Park , Ngorongoro crater, you must see Mt. Kilimanjaro, its nice to see snow in Africa, though its only on the top, which will soon disappear.

You must come down here, some of us go climbing together, how is the idea? of course our health should permit us, i am sure we can do it, or atleast half the way.

In Rwanda you can see the mighty Gorillas, amazing creatures

thanks Mary ann for all the tips you gave me, i am going to try the ginger drops, i wil be going for my 3rd chemo on Monday(18th). hope it will easy on me. I get so scared of Adriamycin,
when its going in, just fear , what if it leaks on my skin.

i was hoping my eyebrows wont fall out, but now i should be well prepared for that, does it look bad when we draw it with the eyebrow pencil ?

Is Herceptin also given Intravenous? for how many hours?

God willing i will be able to afford it.

Keep writing, i Hope you all are feeling well, God Bless you all with good health.

love
christie

[christie]

Dear Shiela,

you took herceptin so many times, i thought if you finish 1 course(9-12 month), you dont need more of it.

Even after Herceptin, you had mets? does that happen?

how are you now? hoping and praying you are feeling well.

[christie]

Dear Maryann,

you too have gone through such rough times, how are you feeling ? i really hope and pray that you are doing extremely well. God bless you

[naturaleigh]

Hey Christie,

You will be much in my thoughts and prayer on Monday, Do they give you fluids first before the Adriamycin? Try your best to eat something before your treatment or while they are giving you the fluids? The less greasy the better. Having something on your stomach helps with the nausea. Also, try getting a good book to read or a game to play during your treatments. I too would watch as they administered the Adriamycin and would get qweezy feelings. I then decided to started reading or playing a game as the nurse adminstered the drug and it seemed to help. I would take my mind somewhere else and not look at what she was doing.

My eyebrows and lashes fell out after my second chemo. I am not a make-up person, so I did nothing. To me I looked funny, that was because it was not what I am used to seeing, but other people hardly noticed.

Have they talked about a port for you? Hercpetin is done intravenously and most people do Herceptin for 1 year. I went in weekly and it took around 1 hour. They administered the fluids first which took the most time. If you are like most people, which I bet you are, you will be extremely nervous the first time because of the not knowing what to expect. While on Herception, you will have an appetite, and no more nausea!! I was also worried about the heart issues so each time before my treatment my dog and I would walk 3-5 miles. Don't try that at first, you need to get your stength back from the chemo first!! You will be amazed at how quickly you will bounce back!!

You have been to Rwanda? That is another place I have always wanted to visit and to witness the Gorillas!! I absolutely love the beautiful gifts God has given us in nature!! Being a resident in Kenya, do you still have to have a passport to visit the other countries?

Take care of yourself and let us hear how Monday went!!

[Mary Jo]

Hi Christie,
You have brought so much to our board with your beautiful descriptions of your country. It's almost like getting away on a little vacation when I read your posts. You sound like such a positive, happy woman who loves her Lord. Your posts truly are a breath of fresh air.

Love to you Christie and may God's Peace and Joy continue to surround you.http://her2support.org/vbulletin/images/icons/icon7.gif

Mary Jo

[ElaineM]

Hi Christie,
Something happened and I lost the note I was posting to you. I am sorry if you see two posts about the same thing from me.
Anyway, thank you for the invitation. Your country and the rest of Africa looks so beautiful and interesting. I hope we can visit you someday. Harrie and I are in Hawaii, so we are more than halfway around the world from you. It is great that we can make such interesting friends from all over the world.
I think chemo and Herceptin are given according to a person's weight and height. The first time a person receives Herceptin it is usually given a little slower to watch for side effects. Things should go faster the next time you receive it. 130 mg of weekly Herceptin takes about 30 minutes plus 10 minutes for two flushes. If you are going to get chemo with the Herceptin you should add how long that takes plus 5 minutes for an extra flush to calculate how long you are going your treatment is going to take. If you are going to take Herceptin every 3 weeks instead of every week it will take longer. Herceptin usually doesn't have as many side effects as chemo does most of the time.
Good luck. We are thinking of you.

[christie]

My Dear Mary jo, Anita, Elaine,

hi thanks so much for writing, they dont give me fluids before Adriamycin, they give something for nausea and after the AC chemo they give me fluids which goes on for 10 hours, yes, i will be taking herceptin once in every 3 weeks, since it will be difficult to afford every week. it will be along with the 5th chemo. Hope i will do well. My pulse rate is high, so i am a bit concerned.

I have not been to Rwanda, i would love to go there and see the gorillas, but i have read so many books on them and they really amaze me.

thanks Mary Jo for the encouragement, felt nice reading your post.

elaine, yeah it feels nice to have you all as my friend, i look forward to your posts. hopefully we can all meet one day, you must come down to Kenya. can there be recurrence even after Herceptin??

today i feel a small painful swelling in my under arm, anything to be concerned about?

love to you all
christie

[ElaineM]

Hi Christie,
Hope you are doing well today. Maybe they are giving you enough fluids before Adrainmycin, so you don't need the regular flushes. Since you are planning to get Herceptin every three weeks it will take you longer than a weekly dose would take, but the good thing is that you will only have to sit there every third week instead of every week. That will probably give you more time to recover and enjoy yourself. Whether or not a person has a reoccurance depends on alot of factors. Everyone is different. There are tests that try ot predict a person's chance of reoccurance. You can ask your doctor about those if you are interested in taking one of those tests, but even those tests are not 100% reliable.
Are there nutritionists, massage therapists, healing touch practioner's, physical therapists, exercise instructors, or naturopathic physicians in Kenya?
You might want to ask your doctor to introduce you to someone in those professions to help you keep your body strong during your treatment.
Your friends here will be thinking of you on Monday.
Take care. Stay positive.

[christie]

hi everyone,

I am back from my 3rd AC chemo, everything went well, but i could feel the difference, this time it has been a bit tough, the side effects pulled me down.

My body aches and feel very uncomfortable at times, maybe this will last a couple of days more and i am sure i will get over it by God's grace.

on 9th Sept i will do my last AC chemo, and thereafter Herceptin will be added along with the other chemo combination.

Please continue praying , i will need all your prayers. Will the next chemo be worse than this? i am a bit concerend, so do let me know if i should be expecting something, at least i can be mentally prepared and not caught off guard.

I know God has a plan for us and its for our good and whatever he does , he has a purpose in it. So hold on to God , he will never leave us.

love you all
christie

[hutchibk]

Christie, what is your status with Herceptin? Please let me know. I still have ideas for you. Is it an approval thing or that you will have to pay for it and can't afford it?

[naturaleigh]

I am so glad to see your post!!! I have been praying and thinking about you daily!!

My 3rd chemo was the worse one for me, I just did not know how I was going to make the 4th one. Everyday it did get a little better and by the time my 4th one was due, I had bounced back. I was nervous and did not want to get that sick again, but I kept telling myself that this is the final round. I my have prepared myself for the worse which was why my fourth treatment was not that bad. I felt bad for 2-3 days afterward, slept alot, then I bounced back. Be sure to drink, drink, and drink, it the long run, it will make you feel better.

Take care, and keep us informed!!

[juanita]

The last few were about the same for me and I didn't feel any worse than the last one. Hope you're feeling better soon!

[christie]

Dear Hutchibk,

hi, nice to hear from you, approval is not the problem, Herceptin is available to me, its the cost which is worrying me, as i said i have to pay $2500 for one dose of herceptin and 9 of them really seems expensive, i have just finished my 3rd dose of AC chemo, they will start Herceptin form the 5th one. Trusting that God will surely provide a way for me. thanks alot for you concern.

thanks anita and juanita for writing in, i really didnt know that 3rd would be the worse, still feeling low, hope next round wont be so bad.

i will try to drink more of fluids, thanks for your advice, i dont know what combination my onc will use after AC, hope those wont be so bad.

praying for you all.

love
christie