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Old 08-05-2008, 09:05 AM   #41
christie
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thanks Patb and juanita,

at least my fears of radiation are laid to rest, you all are so helpful, thanks a lot
love'
christie
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Old 08-05-2008, 12:44 PM   #42
naturaleigh
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christie

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!!
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er, pr-, Her2+++
Stage 2b, grade 3
negative nodes
4 rounds AC
3 months of weekly taxol
1 yr of Herceptin
Finish Herceptin May 2007
35 rounds of Radiation
Reconstruction completed Dec 2007
Implant replaced due to infection Mar 2008
4 Years NED!!!
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Old 08-05-2008, 11:35 PM   #43
harrie
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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
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*** MARYANNE *** aka HARRIECANARIE

1993: right side DCIS, lumpectomy, rads
1999: left side DCIS, lumpectomy, rads, tamoxifen

2006:
BRCA 2 positive
Stage I, invasive DCIS (6mm x 5mm)
Grade: intermediate
sentinal node biopsy: neg
HER2/neu amplified 4.7
ER+/PR+
TOPO II neg
Oncotype dx 20
Bilat mastectomy with DIEP flap reconstruction
oophorectomy

2007:
6 cycles TCH (taxotere, carboplatin, herceptin)
finished 1 yr herceptin 05/07
Arimidex, stopped after almost 1 yr
Femara
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Old 08-06-2008, 02:01 AM   #44
christie
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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
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Old 08-06-2008, 02:13 AM   #45
christie
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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
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Old 08-08-2008, 01:58 PM   #46
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Jambo Christie

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!!
__________________
Anita

er, pr-, Her2+++
Stage 2b, grade 3
negative nodes
4 rounds AC
3 months of weekly taxol
1 yr of Herceptin
Finish Herceptin May 2007
35 rounds of Radiation
Reconstruction completed Dec 2007
Implant replaced due to infection Mar 2008
4 Years NED!!!
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Old 08-08-2008, 04:03 PM   #47
harrie
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Anita, WOW what an AWESOME trip you had to Africa!!!
Maryanne
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*** MARYANNE *** aka HARRIECANARIE

1993: right side DCIS, lumpectomy, rads
1999: left side DCIS, lumpectomy, rads, tamoxifen

2006:
BRCA 2 positive
Stage I, invasive DCIS (6mm x 5mm)
Grade: intermediate
sentinal node biopsy: neg
HER2/neu amplified 4.7
ER+/PR+
TOPO II neg
Oncotype dx 20
Bilat mastectomy with DIEP flap reconstruction
oophorectomy

2007:
6 cycles TCH (taxotere, carboplatin, herceptin)
finished 1 yr herceptin 05/07
Arimidex, stopped after almost 1 yr
Femara
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Old 08-09-2008, 01:42 AM   #48
christie
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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
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Old 08-09-2008, 11:33 AM   #49
Ruth
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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
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Dose dense A/C 4x
Modified rad mast 8/03
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Old 08-09-2008, 01:15 PM   #50
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Smile love from Kenya

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.
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ElaineM
12 years and counting
http://her2support.org/vbulletin/showthread.php?t=48247
Lucky 13 !! I hope so !!!!!!
http://her2support.org/vbulletin/showthread.php?t=52807
14 Year Survivor
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"You never know how strong you are until being strong is the only choice you have." author unknown
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Old 08-09-2008, 05:07 PM   #51
christie
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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
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Old 08-09-2008, 06:06 PM   #52
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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!!
__________________
*** MARYANNE *** aka HARRIECANARIE

1993: right side DCIS, lumpectomy, rads
1999: left side DCIS, lumpectomy, rads, tamoxifen

2006:
BRCA 2 positive
Stage I, invasive DCIS (6mm x 5mm)
Grade: intermediate
sentinal node biopsy: neg
HER2/neu amplified 4.7
ER+/PR+
TOPO II neg
Oncotype dx 20
Bilat mastectomy with DIEP flap reconstruction
oophorectomy

2007:
6 cycles TCH (taxotere, carboplatin, herceptin)
finished 1 yr herceptin 05/07
Arimidex, stopped after almost 1 yr
Femara
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Old 08-09-2008, 07:01 PM   #53
naturaleigh
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Jambo

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!
__________________
Anita

er, pr-, Her2+++
Stage 2b, grade 3
negative nodes
4 rounds AC
3 months of weekly taxol
1 yr of Herceptin
Finish Herceptin May 2007
35 rounds of Radiation
Reconstruction completed Dec 2007
Implant replaced due to infection Mar 2008
4 Years NED!!!
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Old 08-09-2008, 08:39 PM   #54
harrie
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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.
__________________
*** MARYANNE *** aka HARRIECANARIE

1993: right side DCIS, lumpectomy, rads
1999: left side DCIS, lumpectomy, rads, tamoxifen

2006:
BRCA 2 positive
Stage I, invasive DCIS (6mm x 5mm)
Grade: intermediate
sentinal node biopsy: neg
HER2/neu amplified 4.7
ER+/PR+
TOPO II neg
Oncotype dx 20
Bilat mastectomy with DIEP flap reconstruction
oophorectomy

2007:
6 cycles TCH (taxotere, carboplatin, herceptin)
finished 1 yr herceptin 05/07
Arimidex, stopped after almost 1 yr
Femara
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Old 08-10-2008, 05:20 AM   #55
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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.
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Hugs & Blessings
Sheila
Diagnosed at age 49.99999 2/21/2002 via Mammography (Calcifications)
Core Biopsy 2/22/02
L. Mastectomy 2/25/2002
Stage 1, 0.7cm IDC, Node Neg from 19 nodes Her2+++ ER PR Neg
6/2003 Reconstruction W/ Tissue Expander, Silicone Implant
9/2003 Stage IV with Mets to Supraclavicular nodes
9/2003 Began Herceptin every 3 weeks
3/2006 Xeloda 2500mg/Herceptin for recurrence to neck nodes
3/2007 Added back the Xeloda with Herceptin for continued mets to nodes
5/2007 Taken Off Xeloda, no longer working
6/14/07 Taxol/Herceptin/Avastin
3/26 - 5/28/08 Taxol Holiday Whopeeeeeeeee
5/29 2008 Back on Taxol w Herceptin q 2 weeks
4/2009 Progression on Taxol & Paralyzed L Vocal Cord from Nodes Pressing on Nerve
5/2009 Begin Rx with Navelbine/Herceptin
11/09 Progression on Navelbine
Fought for and started Tykerb/Herceptin...nodes are melting!!!!!
2/2010 Back to Avastin/Herceptin
5/2010 Switched to Metronomic Chemo with Herceptin...Cytoxan and Methotrexate
Pericardial Window Surgery to Drain Pericardial Effusion
7/2010 Back to walking a mile a day...YEAH!!!!
9/2010 Nodes are back with a vengence in neck
Qualified for TDM-1 EAP
10/6/10 Begin my miracle drug, TDM-1
Mixed response, shrinking internal nodes, progression skin mets after 3 treatments
12/6/10 Started Halaven (Eribulen) /Herceptin excellent results in 2 treatments
2/2011 I CELEBRATE my 9 YEAR MARK!!!!!!!!!!!!!
7/5/11 begin Gemzar /Herceptin for node progression
2/8/2012 Gemzar stopped, Continue Herceptin
2/20/2012 Begin Tomo Radiation to Neck Nodes
2/21/2012 I CELEBRATE 10 YEARS
5/12/2012 BeganTaxotere/ Herceptin is my next miracle for new node progression
6/28/12 Stopped Taxotere due to pregression, Started Perjeta/Herceptin
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Old 08-10-2008, 12:51 PM   #56
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love from Kenya

Aloha,
I would love to see Kenya and the rest of Africa someday too.
__________________
Peace,
ElaineM
12 years and counting
http://her2support.org/vbulletin/showthread.php?t=48247
Lucky 13 !! I hope so !!!!!!
http://her2support.org/vbulletin/showthread.php?t=52807
14 Year Survivor
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"You never know how strong you are until being strong is the only choice you have." author unknown
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Old 08-10-2008, 05:19 PM   #57
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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
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Stage IV Inflammatory BC 1/00
Mod Rad Mastectomy 24nod/5+
Adriomycin Cytoxin Taxol
Tamoxifen 4 1/2 yrs
Radiation - 32 x
Metastatic BC lung/liver 10/04
thorocentesis 2x - pleurodesis
Herceptin Taxatiere Carbo
Femera/Lupron
BC NED 4/05
chemo induced Acute Myeloid Leukemia 5/06
Induction/consolidation chemo
bone marrow transplant - 11/3/06
Severe Host vs Graft Disease of liver
BC mets to lung 11/07
Fasoladex Herceptin Zometa Xeloda
GVHD/Iron overload to liver
Avascular Necrosis/morphine pump 10/10
metastatic brain tumor
steriotactic radiosurgery
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Old 08-12-2008, 07:16 AM   #58
christie
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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
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Old 08-12-2008, 07:25 AM   #59
christie
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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.
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Old 08-12-2008, 07:27 AM   #60
christie
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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
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