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danelle

Chemo And Pots

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Has anyone had experience with Chemo and POTS? I have been diagnosed with breast cancer and I am having surgery next monday(which is gonna be bad enough with the Pots) but then I have to go through 6 months of chemo then 6 weeks of radiation therapy. ANy advice would be greatly appreciated!!

Hi to all my friends I haven't talked to in forever. Sorry I disappeared for a while but I am back!!

Danelle

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Guest tearose

Danelle,

I don't have any experience personally so I can't share any information about chemo.

I wanted to offer my suport as you go through all you will over these next months...

I am sorry this is something you must deal with... this news and surgery and chemo.

My prayers are for all good and healing things to now come your way.

best regards,

tearose

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take one day at a time and you will handle it. Also take your favorite dessert as needed.

I did ribivarin (pills) and interferon sub cutanious for a year, its the hepatitus C treatment. You will be getting your meds- IV? The shot is once a week. I slept 24hours around the clock on shot night. It is scary because chemo can really mess with your system, BUT that's why the docs do reqular blood work. You will probably have a 24hour nurse call in line with all the support you need. Drink 2 liters of water a day! I think it would be a good idea to ask your pots doc it he has other patients that have done the chemo and ask for permission to call them. There is nothing like haveing some one to talk to that understands.

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I have no experience with this but I want to say I will be thinking of you. I'll say a prayer for you, too! Talk about rotten luck. POTS and now cancer. I wish you well with your upcoming surgery. ;)

Bri

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Danelle, Just wanted to say hello,I wish you well,I will pray for your recovery and the strenght to edure. Hugs and Love P

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Hi, Danelle:

I don't have any personal experience with chemo, but I wanted to join the others in wishing you the very best. You will be in my thoughts and prayers this week for peace and on Monday during your surgery. POTS is enough for anyone to live with; I'm so sorry you were dealt this double blow.

Deucykub

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First I want to say thanks to all of you for your support and kind words. Please do keep me and my family in your prayers. I am just sorry that my life took me away from my "other family" here on the site! I am overwhelmed again by the kind words and support that I find here. And it is only you guys that TRULY understand where I am coming from.

I must say, this new journey I am about to undertake is terrifying but having your thoughts and prayers with me helps me tremendously. For those of you that remember me, my son is doing fair with his POTS. He is now 19 and in college but still continues to have problems with his, chest pain in particular. Keep him in your prayers as well.

Yes, all my chemo will be infused intravenously (IV). I will be finding out what type after surgery but I do know that lots of the chemo drugs have effects on your heart ;) so that is a huge concern on mine. On a lighter note, I will be able to pick out the long beautiful hair that I have always wanted!! The few wigs that I have tried on are gorgeous and you honestly can't tell that they are wigs.

Any other responses will be greatly appreciated! And to those of you that I don't know, I look forward to getting to know you all over time. I won't be leaving the site for that length of time again,, the only way I will is if I am physically unable to get on.

Best wishes and thanks to you all,

Danelle

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Danelle, first and foremost, good luck with your treatment. Lois, one of our members, also has had treatment for breast cancer, if I recall correctly. Her username is goldicedance on the forum--hopefully, she'll answer you directly to give you some input.

Nina

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Pretty much the only thing I've been told so far is that it's SO important to stay hydrated, especially if the chemo makes you nauseous. Other than that, making sure your POTS doc is aware of what's going on, and maybe he or she will have experience. I'll be sure to let you know if I learn anything else.

I'm so sorry you're dealing with this. Please PM me if you want to talk.

Love and hugs,

Megan

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Hi Danelle,

I'm sorry to hear that you have found out that you've got to deal with breast cancer on top of your POTS. From the tratment plan you've mentioned it sounds like your docs are confident that they can wipe this thing out. I don't know if you are a Kylie fan but look at how well she is doing now - back on tour performing! Well I don't know if you can sing or not and the POTS might confound the long dance routines but you have to aim somewhere!

I don't know much about chemo but I know that sickness / vomiting can be a problem for some people. I would ask for Ondansetron IV - it is one of the best anti-sickness meds available and often given to prevent post chemo nausea. Also as avoiding dehydration is essential I would ask them to load you with IV fluids before during and after each chemo session - that should give you the best bounce-back potential.

Best wishes as you enter this journey - we will all be with you every step of the way.

Flop

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For nausea, a tea from a slice of fresh ginger is recommended 20 minutes before a meal, among the group I was in. It being- like I said a sub cutanous interferon and ribivarn pills.

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Guest dionna

i also have no experience but wanted to let you know i will be thinking of you!

dionna :P

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Danelle, I wish you good luck as you embark upon this challenging journey. I have gone down that same road about 18 months ago. I sent you a message of support and assistance but haven't heard from you.

I would like to say to all of you that there are so many drugs out now that help prevent nausea that you are doing Danelle a disservice by mentioning nausea and dehydration to scare her. The oncologists do a great job in finding the right med(s) to help you along. Moreover, they keep you quite hydrated with fluids. I could go in anythime for a "fill-up." The oncology nurses are so important to your care and are willing to help you along in finding the right meds to deal with your symptoms. I actually found that my POTs was doing better during the chemo part (much to my surprise) due, I think,to the steroids and fluids.

The combination of chemo drugs they used on me CMF-Fu)did not cause me to fully loose my hair. By the end of the chemo, I looks pretty wane, pale, and worn out. My hair had gotten really thin in areas. I tried on hairpieces but none seemed to improve the situation.

Your support system is really important. My husband was really an angel in caring for me, making sure I would eat (even if it was just chicken soup or junk food), stay hydrated, and rest. I got chemo once every 3 weeks for a total of 6 treatments. The first week was not too bad (still on the anti-nausea meds), the second week was a little more difficult, and the third week was good.

The oncologist told me at the onset of the chemo that he would age me about 15 years. He was right.

It took me about a year from the end of radiation to get back to my old POTS self. I can look in the mirror and not see an elderly person staring back at me. One benefit of the chemo -- I now have curly hair.

My chemo infusion center was very lively. Unfortunately, it was usually quite busy. There was a great comraderie among the patients--laughter, conversation, and support.

There are a number of great books out there. One of the best is The Breast Cancer Husband. It applies not only to a husband but your family as well. I hope that you have someone who is willing to accompany you to the infusion center as well as to the radioation center.

I had about 35 radiation treatments. The treatments themselves were a snap. Once you start radiation, each treatment lasts just a few minutes. Radiation did make me tired as it would anyone. I got additional hydration during that period.

Don't be surprised if you find that some of your old friends kind of disappear during this time. Mighty Mouse can help you out on this one.

Please give me a holler if you would like to chat.

Don't let anyone scare you...you will be strong and you will survive...YOU ARE WOMAN!!!

Lois

PS For those of you who fortunately have not personally undergone this treatment, I urge you not try to scare others who are about to undergo this treatment. There are advances everyday to help improve the treatment and your reactions to it.

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Danelle,

Call me g/f. Im here for you. Im not that far away from you. I just got through with my mothers breast ca. Went through the surgery, radiation, and chemo. I have tons of natural salves and remedies for radiation burn, nausea, and a lot of other things to help keep you more comfortable. Are you goiing to the Breast Center in Asheville?

Just call me!

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Once again,

Thanks to you ALL, You are all a blessing to me. Sorry I havent' been on. I had my surgery last monday and am still very sore but wanted to get on and say Hi and see what was going on.

Lois,

I would LOVE to talk to you!! I think I see where I have a message from you, if it has your number I will call. Is there any certain time that is better for you? Thank you so much for your kindness.

Janine,

I lost ur number!! IM me at danirn_951~~still yahoo.............

God bless you all and wish me luck, I get the results back of the pathology from my surgery tomorrow afternoon.

Danelle

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danelle -

i wasn't able to reply when you first posted but just wanted you to know that you have been & will continue to be in my thoughts & prayers. i won't pretend to know exactly what you're going though but i know it can't be easy and am sending a lot of love & oodles of good thoughts your way. i hope you're able to connect with goldicedance as she was the first person i thought of when you first posted & i'm certain will be able to give you wonderful support in the way that someone who truly "gets it" can (as she already has in her post).

hang in there the best you can,

B) melissa

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Danelle, I have not been through this journey either, but goldidance is so right. Chemo is not fun, but much easier than it used to be. They do have so many, much better drugs out there now for side effects and the cancer centers job is to keep you hydrated and as physically well as possible.

The care has changed a lot and is very tailored to each patient. I know it certainly won't be a picnic, but i worked with gals that were able to work right through their chemo and radiation. 3 of them at the same time, once.

You are in my thoughts and prayers and hope the biopsies come back good! morgan

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Guest tearose

Sending you many waves of healing energy!

Let us know how you did at the doctor today and know we are with you in spirit.

hugs, tearose

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