love from kenya - Page 2

ElaineM · 07-31-2008, 03:41 PM

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 · 07-31-2008, 05:05 PM

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 · 07-31-2008, 06:08 PM

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 · 07-31-2008, 06:35 PM

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 · 07-31-2008, 09:00 PM

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 · 08-02-2008, 01:17 AM

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 · 08-02-2008, 01:24 AM

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 · 08-02-2008, 03:12 AM

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 · 08-02-2008, 06:19 AM

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 · 08-02-2008, 06:37 AM

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 · 08-02-2008, 07:01 AM

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 · 08-02-2008, 08:59 AM

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 · 08-02-2008, 09:05 AM

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 · 08-02-2008, 09:17 AM

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 · 08-02-2008, 12:11 PM

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 · 08-02-2008, 07:11 PM

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 · 08-02-2008, 07:50 PM

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 · 08-04-2008, 02:00 PM

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 · 08-04-2008, 04:49 PM

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 · 08-05-2008, 08:54 AM

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