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Update on Chemo and POTS


goldicedance
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Just thought I would let you all know how I am doing. I have now just had my second chemo treatment. Things are going pretty well. My oncologist is very attentive to my hydration needs and I have had "refills" each week and for a couple days after the chemo. Nausea is well as nausea is. Compazine was not woring too well. Now I am trying Zofran. Wow--is that expensive--over $400 for a 4 day supply of 12 pills. If that doesn't work, I will try EMEND, which is probably more expensive. I am more fatigued than usual, but what the heck--the end result is worth it. Four more chemo sessions to go and then it is on to 42 sessions of radiation. If anything will poop me out, this will. My husband is so extremely supportive. Of course, my daughter who has been out of country since before my surgery is really anxious. She is coming home in a few weeks to see me. I can't wait.

Let me tell you all something...if you think living with POTs is a downer, try living in POTS in Pink. I don't think a day goes by without me thinking about breast cancer. While my prognosis is good, one is never out of the clear...hence, living in Pink!

Be well..Lois

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Thanks for the update Lois! I'm glad you have a good prognosis -- that's something!

As for the Zofran...??????!!!!! :lol::P:blink::lol::) Yikes!! You need to win the lottery! :)

A very dear friend of mine (also with POTS) had to go through the same process when she was "living in the pink!" It was a time of utter exhaustion, physically & mentally, but she managed through and is now "free and clear." Hang in there! I'll be keeping you in my prayers!

With love,

Angela

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Thanks, Angela, for your kind words of support and encouagement. Living in pink is the best description of breast cancer. One just never knows when a recurrence can happen. It is scary reading the various books out there. As one esteemed radiation oncologist put it to a husband who said something to the effect that once the radiation was finished, then this is over. The oncologist said something to the effect that breast cancer, like other cancers, are never over. It is something I will have to live with. Not a day goes by without me thinking about my cancer. I don't think I am obsessing with it or being more depressed than others. I am still enjoying my regular activities, although at a slower pace. In fact I have something great to look forward to--we are going to build a house in Palm Coast, Florida, a small city halfway between St. Augustine and Daytona Beach. We chose that location to retire since it is not only beautiful (and certainly no hotter than Washington DC but with milder winters) but because it is near the Mayo Clinic in Jacksonville. I can get primary care at the Mayo's satellite site in St. Augustine. The doctors there can easily get referral to the Mayo specialistis without the extensive wait that others outside the Mayo community have to endure. There is a doctor at the Mayo Jacksonville who trained under Dr. Low and is an expert on POTS. Hopefully, all will go smoothly.

You all are just so kind and supportive. I feel much better after "talking" to you.

Have we ever considered an internet conference where we can see and talk to each other live? I don't think that is really difficult to arrange. It might be interesting!

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Hi Lois! I'm so glad to hear from you, I'd been wondering how things were going for you but didn't want to impose on you to ask if you weren't feeling well. I think I can really understand some of the things you are feeling, not from first hand but as a caregiver for my mother when she went through the experiences of breast cancer. You are so right, the thought is with you every day, and always the little thought of "is it all gone, is it coming back, what's going on in there..." I hadn't heard that expression- living in Pink- but how fitting. I don't think it is a thought that ever really goes away and that is difficult. But I think over time it does recede and become somewhat less of an overwhelming thought. You are not obsessing with it, it is a real thing that is there every day. It is the reality of cancer. Sounds like you are keeping positive and have a really good outlook. (I'm not very good at written expression, so I hope that what I am writing is coming across un-offensively! I always worry about it reading differently than how I mean it to sound.)

Sounds like they are taking good care of you with the refills and all. I know, I can't believe the cost of Zofran! It would be interesting to know how much the actual cost of manufacturing the pill is. That's great that you are almost done the chemo! Yahoo! Good for you, that's a big part of it! And I'm so glad your daughter is able to come home soon. She'll feel so much better when she gets to see you and be involved in the action a little bit. Take care! Laura

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Lois, thanks for updating everyone. I was meaning to send you a pm, but I've been dragging--just can't seem to shake whatever it is that got me sick at the end of August...and then I broke my toe, followed by spraining my ankle on my opposite foot. I really have been thinking about you, even if you didn't get a note from me saying so...

Keep plugging forward and keep that positive attitude of yours. It matters! Here's to getting to see your daughter soon, and you being cancer free too. :D

Nina

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Lois,

Keep you chin up---I'm rooting for you. That's a lot to go though----and i'm glad to hear you have a supportive husband and daughter. I'm happy to hear you will see her soon. Sometimes looking forward to something good can help ease some of the day to day struggles you are going through in rough times like this.

I'm excited to hear the prognosis is good for you. I'll tell you the advances they have made with breast cancer is very encouraging. My brothers girlfriend was involved with the breast cancer walk this year in Toledo. People come from all around the country to attend----It was huge this year. My brother walked with her.

She has a sister in law that is a survivor-----she was one of people that was being honored this year.

You will come through this with flying colors-------Take Care.

Sending you prayers for healing & HUGS to comfort you----------- :D

Julie :0)

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Hi Lois,

I'm just writing to say i admire your positive attitude about these treatments and your future. I don't have much personal experience with cancer, but i can say that i appreciate you are fighting an amazing, tough battle...and with POTS too! Thanks for updating on your condition. Since I am still fairly new, I'm still trying to figure out what is going on in each person's life. Sometimes it is hard to keep track of who is who, but when I read posts like yours, it really opens my eyes to see that many of us are dealing with a whole lot more than a POTS diagnosis. Sorry for rambling! My thoughts are with you!

Kristen

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Lois,

You are such an inspiration and sign of strength. I'm sure there are days when you may not see that or feel it but please know that it is true. You encourage so many of us on the board with your attitude and perseverance!!

I will wear the pink and the pin in your honor!

I'm cheerin you on...can you hear me now? :)

(((((HUGS))))))

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Lois it is so great to hear that you are toughing right through this. Keep up all hopes in your battle. I will keep you in my thoughts and prayers. Great to hear that your daughter is coming for a visit. Maybe you can pull out some old scrap books and remember the days. Hang in there.

Rita s

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Guest Mary from OH

Lois,

Thank you so much for updating us and staying a part of our "family"!! I too love your "living in pink" phrase and have now dubbed you a Pink POTSIE! You're right, its's got to be so CRAZY trying to deal with cancer AND POTS!! Talk about a double whammie!!

You really are an inspiration to all of us!! Have you been able to find any of the wonderful Breast Cancer Survivor/Inspiratoin books on tape that have been written? Some of them are truly beautiful and inspiring. I thought maybe you'd like to listen to them since you're brain is so much in that mode anyway and you have such a positive outlook. This would just enhance it all the more.

Keep your spirits up and rest... Stay happy and take time to heal. It's so wonderful to hear that your hubby is right there by your side, helping and supporting you. Just what you need. You truly are blessed. Wishing you many years of happiness as a SURVIVOR - which is exactly who you are!!

TONS OF HUGS AND PRAYERS SAID AND SENT!!!!!!!!!! :ph34r::P:(:):lol:

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Lois

I have to say that given what you are going through...Breast Cancer Awareness month hit me a bit harder...

Please know that we are all here holding you up...and in the words of my wise spiritual counselor...we will sing your song for you when you cannot...

I truly believe that you will SURVIVE and ENDURE and THRIVE...

Your house sounds wonderful...

As for the radiation and chemo...not so wonderful...time to start a BIG CHECK OFF calendar to put big Xs everytime you finish a treatment!!!!

Sending you hugs,

Emily

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