Has anyone started a forum for Chemo in Dec 2008?

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  • Texas357
    Texas357 Member Posts: 1,552
    edited February 2011

    Havehope: Sorry to hear that you have to go through this again. You can do this! Please keep posting about what's going on with you, okay?

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  • lovemyfamilysomuch
    lovemyfamilysomuch Member Posts: 1,585
    edited February 2011

    Havehope,

    With you sister!  Praying and sending love and support. xo

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  • Mandy1313
    Mandy1313 Member Posts: 1,692
    edited February 2011

    havehope: sending love and prayer your way.

    And all of my other sisters here, I also send love and prayer. 

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  • EleanorJ
    EleanorJ Member Posts: 752
    edited February 2011

    I have been so busy with my new job that I realized I had logged in for a while. I get the posts in my email, but never get around to replying. How do you all do it working full-time year round??? This makes me appreciate not having to work full-time a lot more.

    Firni, sorry to hear about your friend, yes indeed, cancer does suck :(

    Havehope, sorry about the new dx, when do you expect to start chemo again? We're all here for you.

    Bold, what ever happen to your MRI results? I suppose they didn't find anything serious, but did they find what is causing the problem?

    Just a quick drop in to say hi :)

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  • Bold
    Bold Member Posts: 692
    edited February 2011

    I am sorry I thout that I posted that it eas a birth defect that just showed up. Since I am older and fatter!!! Leave it to me to be such a procrstinater that my birth marks show up in my 50's. HA!!

    I am still dealing with fatigue and my knees hurt all the time. I am starting a more strenuous diet and exercise program. UGGGGGG. Its like I woke up one morning and I am old! Wrinkled and creaky. Maybe the chemo and rads and menopause huh? Geese!

    I guess its a privilege denied so many to grow older and I am fortunate

    I welcome anyone to take a look at my website. Its a work in progress. Please feel free to sign the guest book. It would mean a lot to me.

    In peace and beauty.

    http://ritabold.zenfolio.com/

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  • lovemyfamilysomuch
    lovemyfamilysomuch Member Posts: 1,585
    edited February 2011

    Bold!!  I had no idea that you had so much talent!  I am so impressed with your work, it is lovely and engaging and calming.  Loved it!!! xo

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  • Bold
    Bold Member Posts: 692
    edited February 2011
    Embarassed Thanks!!!!!
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  • Texas357
    Texas357 Member Posts: 1,552
    edited February 2011

    I recently found information on the Internet -- memorials for people I graduated high school with. It really brought home that idea of growing old as a privilege. I live for all of those who didn't have this opportunity. I promise to do my best not to squander this time (especially with pity parties,no matter how tempting it is to fall into that trap).

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  • Firni
    Firni Member Posts: 1,519
    edited February 2011

    Wow, Bold.  I'm very impressed!

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  • havehope
    havehope Member Posts: 503
    edited February 2011

    Bold, that is fantastic! Very nice photos. 

    Today I had my app with my new onc at Memorial Sloan-K. She is very nice. I start chemo on March 17. Until then I need blood work, a CT scan and ports surgery. I will have 2 ports one in the abdomen. I will do Taxol and Cisplatin - Day 1 Taxol IV, Day 2 Cisplatin IP (Intraperitonial infusion) Day 3 - Hydration, Day 8 Taxol IP and again starting Day 21. I have 6 treatments-24 sessions. She told me it will not be easy, it will be painful ( abdominal pain because I am too skinny ( 114 lb, petite frame) but I have a very good chance of getting "cured". I sure hope so. I am scared. The cisplatin is really nasty and I am not good with pain. They will "pump" 2 liters of liquid in my belly.The painkillers will constipate me and give me more pain. Isn't this ironic? Also, I can loose my hearing. Oh! It is what it is! 

    I hope all of you are doing good.  

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  • Texas357
    Texas357 Member Posts: 1,552
    edited February 2011

    Damn, I wish you weren't having to go through this HaveHope. You've already proven how strong you are though! You have my prayers.

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  • EleanorJ
    EleanorJ Member Posts: 752
    edited February 2011

    Well Bold, if it makes you feel any better, my foot problem is due to a degenerative bone disease that I was born with and didn't show up until now! LOL! Your pictures are beautiful!

    Havehope, sounds like a rather harsh & busy treatment, but the odds are good and in your favor, be strong, you did it once, you can do it again! And we're all here for you.

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  • Bold
    Bold Member Posts: 692
    edited February 2011

    Yikees!! Havehope my goodness. I remember facing chemo. I just put my head down and did it. Not thinking about it. I wish I could do this for you. As I have enough weight for the two of us. Pain Sucks!! But you just have to remember its only temporary. Then you will have a life time to live with happiness and Great accomplishment. You will beat this and it will not be a scary as you are imagining. Are you getting any support from people that have been through this before? I hope so. They will know all the tricks.

    We are sooo here for you. Will you loose your hair again. If so I can send you anything that you might need!!! My arms are around you and your spirit is in my heart and a prayer in my thoughts.

    Thanks for the compliments on my site, It means the world to me. Art is subjective and knowing you like it ROCKS!!!!

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  • Firni
    Firni Member Posts: 1,519
    edited February 2011

    Havehope, it sounds like a tough road ahead of you.  When will you be finished??  Bold is right.  If you need anything, let us know.  Otherwise know that we're all there with you in spirit and are praying for you daily.  My first prayer for you is that this will not be as painful for you as they say it could be.  And that it does its job!!!

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  • havehope
    havehope Member Posts: 503
    edited February 2011

    Thank you all for the kind words and wishes. I will come back here as you are my sisters.

    Firmi, I should be done second week in July.

    Take care and stay healty.

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  • Mandy1313
    Mandy1313 Member Posts: 1,692
    edited February 2011

    Havehope: Sorry I have been missing in action, but I have an awful case of flu. That does not stop me from thinking of you and wishing you all the best.  You are at a premiere cancer center. They know what they are doing and while your onc has painted a difficult picture, she has been honest; she also expects the treatment to work. 

    During my chemo, I used regular acupuncture for symptoms---once or twice a week. It made a big difference in my reaction to the treatments. I had my oncs permission and went to someone trained in both traditional Chinese and Western medicine.  Perhaps your oncologist can refer you to someone who does acupuncture or one of the Eastern medical therapies that might relieve some of the chemo side effects.

    In any event, we are here for you. And you only have to let us know what you want.

    Sending love and prayer your way.

    Mandy

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  • Mandy1313
    Mandy1313 Member Posts: 1,692
    edited March 2011

    I thought I'd post some good news about my kids here.  My younger daughter is officially in the top 3 percent of her class of 1500 at Harvard!!! My older daughter wrote an article that actually managed to save the only public transit between Sonoma and San Francisco!  See my facebook for details. Proud mama!

    Love to all and take care.

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  • Texas357
    Texas357 Member Posts: 1,552
    edited March 2011

    Wow that really IS something to shout from the rooftops! Wonderful news!

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  • Mandy1313
    Mandy1313 Member Posts: 1,692
    edited March 2011

    Thanks Texas! 

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  • lovemyfamilysomuch
    lovemyfamilysomuch Member Posts: 1,585
    edited March 2011

    Brag away!  That is absolutely fantastic!!  You must be so proud!  Thank you for sharing this wonderful news! xo

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  • Mandy1313
    Mandy1313 Member Posts: 1,692
    edited March 2011

    Thanks lovemyfamily!

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  • havehope
    havehope Member Posts: 503
    edited April 2011

    Hello everyone!

    Today my hair started to fall out. 2 weeks on the dot since cisplatin. I hope it kills all the cancer cells, too!

    The first session of treatment was very hard, painfull, and for 6 days I was in the " chemo zone" - not my body, not my brain. It was beyond words. 3 days of 5-8-4 hrs treatment, plus 1 1/2 hrs driving back and forth ( my DH was driving) with my belly and my body full of 4 L liquid not easy. We had to wake up at 4:30 AM to be at the hospital by 7. Thank God I am back to being me! For next treatment which starts April 14, we decided to stay in the city (NY) overnight btw session 2 and 3. I was told that I might not get the abdominal pains anymore since I had another Taxol done in the belly a week after the cisplatin and it didn't hurt. I hope so.

    The good news is that my tumor marker was normal -24 (max 35) even before I started chemo which means all cancer has been removed via surgery which gives me a good prognosis.



    I hope you are all well!



    xoxo

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  • EleanorJ
    EleanorJ Member Posts: 752
    edited April 2011

    Havehope, it's so good to hear from you, I was wondering how you were doing with chemo. Sorry to hear about the hair, just when it was growing back! Overnight in NY sounds like a much better idea, where are you from? I'm about 2 hrs from NYC, of course probably in the other direction! Any chance you might be able to enjoy yourself between treatment? While I was doing chemo, tx was Monday and I wasn't knocked out until Wed. Let us know if we can all do anything to help out :) hugs..

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  • Mandy1313
    Mandy1313 Member Posts: 1,692
    edited April 2011

    Havehope, glad to hear from you.  I think staying in New York between the tx will make it easier on you and your hubby. New York traffic can be so crazy and at least you won't have to deal with it.  Will you stay near MSK?  I am hoping that you find the next treatments easier for you and that is great news about your markers.

      I am guessing that you won't be eating meals out, but if you are, message me and I can suggest some restaurants near MSK.   Also, for your hubby---you can get pretty good delivery of real meals from different restaurants in the area...not just pizza and chinese. 

    Take care. Many hugs.

    Mandy

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  • Firni
    Firni Member Posts: 1,519
    edited April 2011

    Hi havehope.  Wow, that chemo sounds aweful.  How many tx do you have to have?  I'm praying that the next ones are easier for you.  I have to agree that staying in NY is a better option.  Even if you can't do anything.  Wonderful news about your tumor markers tho.  Almost makes you wonder if the chemo is worth it.  Almost.  

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  • lovemyfamilysomuch
    lovemyfamilysomuch Member Posts: 1,585
    edited April 2011

    HAve Hope, this stinks that you have to do this.  Hang in there sister, I am praying for you! ox

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  • havehope
    havehope Member Posts: 503
    edited April 2011

    Thank you all for the kind words and wishes.



    Cebula, I live in NJ. It looks close to NYC when you look at the map, but it's different when you have to beat the traffic.



    Mandy, yes, we'll be close to Sloan.



    Firmi, I have 5 treatments left but each treatment has 4 sessions, so I have 15 more infussions 5 IV and 10 in the belly. 5 sessions will be hydrations. I will be done in mid July if everything goes well. It took me a while to decide if I should or not do chemo. This one is even more damaging to the other organs and bones than the one I did for bc. Plus I have an increased risk of being left with diabetes after chemo due to decadron which puts my glucose level in the 200 range. That explains my teribble fatigue after each treatment. 3 doctors told me that with abdominal chemo I have a very good chance of getting "cured". One of the differences btw bc and ovca in stage 3 is that ovca comes back in 80% of the cases; only 10% live past 5 years. Most of the women die in the first 2 years from dx. I was lucky that the surgeon was able to remove all visible cancer and that gives me a very good chance of being in the 10%. If it doesn't come back in the first 2 years the risk of coming back is very slim. I have to be checked every 3 months for the first 2 years.



    I wish you all the best and please don't forget your follow-ups.

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  • Mandy1313
    Mandy1313 Member Posts: 1,692
    edited April 2011

    Havehope:

    You are a real trooper but with good reason.  It sounds as if while your road will be difficult, according to the doctors, that rainbow and pot of gold will be waiting for you when you finish  your chemo.  In the meantime, please let me know if there is anything I can do.  I am a couple of hours from New York by train and can take a day trip there in a pinch.

    Sending many hugs to you.

    Mandy

    PS I know what you mean about that Manhattan traffic--you never know if it will take an hour to get to where you are going or three hours.  So you are wise to stay closer to MSK.  

     

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  • Firni
    Firni Member Posts: 1,519
    edited April 2011

    havehope. prayers for you that you get thru this without too much damage and your blood sugars can return to normal.  Wow.  15 more infusions... I'm fatigued and sick just thinking about it.  I hope these next few months go quickly for you and pray you will be in that 10% when it's all done.  Well worth the agony for a good chance of a cancer free future.  Hugs to you!!!!

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  • lovemyfamilysomuch
    lovemyfamilysomuch Member Posts: 1,585
    edited April 2011

    Thinking about you Have hope! xo

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