Calling all TNs
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Question...for you gals that are PFC and/or rads and/or surgery...being TN, how soon did you have your chemo port removed? Or how long were you told you should keep it? Onc says 3 years, PS says whenever I'm ready, RO says when rads are done, and personal doc says onc is probably over-protective but maybe a year at most (as long as I have no problems with it). So four different opinions. I want it OUT and after rads seems reasonable to me. I will be done the end of August and I'm thinking that Oct/Nov sounds like a reasonable wait. Thoughts?
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Heidi - beautiful! I live in the city and the only horses we can see here are either in zoo or the turf club:( Love Nature!
Titan- sorry about the accident.
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Husk-I finished chemo on Dec 1 and had my port out on Mar11, during my exchange surgery. PS needed to do some additional work on a "divot" that was just below my port near my left breast, so I had a reasonable excuse to have it out. Onc would have prefered that it stay in a bit longer but understood why it was coming out.
Titan-Hang in there. Get out the Xanax and use it when you need it. This will get better. Keep in mind that your son is goingto be OK.
Gami-Welcome to you. Come back and see us.
Heidi-going to and watch that video now.
Keep cool everybody. This better than 2 feet of snow!
Navy
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Headed out to teach Pond Study to 6-12 year olds. Staying in the shade (I hope). SO glad I don't have any nature groups tomorrow, it's gonna be brutal with the heat index.
Tita- keep us posted on your son's finger.
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Titan: Sorry to hear abour your son's accident. It's pretty shocking how many young people get hurt on the job - hope his finger is fine and he'll be flippin' the bird as needed
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Good Morning girls,
I have been lurking, just reading for a few days, welcome to all the new people, sorry you have to be here, but this is a good place to feel like you are just one of the gang, no need to put on a brave face when you don't want to.
Titan-Praying for your DS recovery. I know it is hard to see the one's you love hurt or in pain. I have always said if it had to be someone in my family, I am glad it was me. My 7 yr German Shepherd was diagnosed with Degenerative Myopothy a few mo ago, same symptoms as MS, going paralyzed slowly. So hard to take, can't imagine if it was my DS, although he is like another member of the family.....(the dog)
Heidi- I LOVE your adventures! That looks soooo fun. I have 2 horses, haven't ridden in a couple years, due to worry about falling onto these brittle bones. But you have inspired me! I will look at that video untill I get out there and do it! Will have to wait for a little break in the weather, though. Heat index is going to be 105 today, so the most work they will do today is walk to the water barrel.lol ps is that Dun a Halflinger? Think I have only seen one before, so just guessing.
Husker-I now have my 3rd port in, and I don't think I will ever get rid of it! Mine sticks out a little, but the benefits outway the cosmetics of it by far. I will say the first time, I couldn't wait to get it out, never thought I would need it again. Second time, doc said I could have it out when I wanted, but I chose to wait a yr. to make sure (so I thought) I wouldn't need it again. A yr later, number 3. It's your choice, and reading your bio, I would want it out too. But if it doesn't bother you, a few mo won't hurt, will it? Definately a hard call.
Suze-glad to hear from you. I am on Xeloda, too, and it is making me extremely tired, usually day 5 thru day 2 post pills. I do 7 days on 7 days off, how about you? (Can't remember if you said, chemo brain) I was supposed to start my pills Tuesday, but WBC was too low (they say this is uncommon with Xeloda, so no Nuelasta shot so far, but this is the 2nd time out of 5 cycles I have had to delay). So, blood test again Friday to see if I can start then. They tell me there is nothing to do to bring your WBC up, just avoid crowds and dirt (have a hard time remembering to use glovesin the garden), but no foods to bring them up. Anyone heard anything different on this subject? PS-I have only had 4 grape tomatoes so far, but a couple gr peppers and a boatload of cukes.
Navymom- Hi nice to hear from you, hope you are having a "cool" summer, although you are not far from me, so stay in and stay cool!
(((Hugs))) to all having a rough time, chin up, and know you have us to listen and comfort you.
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Heidi- That is so cool. My sister and her BF have horses. I will show her your video because I know she would love to do that with her horse but they are not near water.
Welcome to the newbies.
Boy this thread is active these days. I just came to see how you guys were doing and I had to read 5 pages!!! Titan I hope your son will be ok.((hugs)).
So, we are enjoying beautiful wheather in sunny Daytona. My little boy got to feed big gators yesterday. I love seeing him amazed..... It feels great to leave "my reality" for a couple of weeks and don't think about doctor appointments and all. It's weird, when on vacation, I don't feel achy at all............I AM NOT GOING BACK!!!!!
Have a great day everyone. Hugs.
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Get the port out when you're ready. You just never know, but its a step in putting this mess behind you. I got mine out right away and glad I did! Three years would be nuts!
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Hello everyone,
Titan, fingers crossed for your son!
Huskerkkc, may I ask why you are cutting down on the citrus fruit? What negative effects do you think has?
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Husker - When I first started my journey, I was planning on getting my port out when I did my delayed reconstruction - about a year after having it in. Once we realized my cancer had advanced, I decided to keep it in indefinitely. If I get to 36 months post-surgery without a relapse, then I will have it removed. It is a personal decision - but my doctor told me we could always put another one in if I really wanted it gone down the road.
Rella - you sound good, I'm glad to hear from you! I am doing Xeloda 2 weeks on, 1 off. My doctor told me we can switch to 1 on/1 off if need be. My first cycle has been a little screwy as I stopped for three days to assess my headache. But so far, I have a little tingling in my fingers, some occasional bathroom issues, mild nausea and heartburn (a problem from chemo in general), and this fatigue. I swear it hits an hour after I take my pills!! I can tell my WBCs are getting hit, because I have that feeling in the pit of my stomach, but hopefully not too bad. There isn't anything I can think of that boosts them besides time and shots
. I hope you have good numbers this next time around! Maybe they can do a slight dose reduction?? Cucumbers!! I'm jealous! I swear, everything just STOPPED growing in this heat, even my zucchini. Wugh.babs - I am so glad to hear you are having good weather! I remember when my 10 year old saw gators for the first time, he was in awe. It is amazing, and I think we treasure these moments so much now. I know can just stare at my kids for hours... Take a dip in the ocean for me! That is my meditation "safe place"
.Have a cool day everyone!
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have a great weekend ladies I am heading out today camping in my new trailor yipeee.
hugs Kymn
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Hi Titan, hope you son will be ok. Computer was broke so taking me a time to catch up. Hope every one is doing well
Bernie
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Titan, so sorry to hear about your son, I hope everything will be ok.
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rella- I am glad I have inspired you to reconnect with your horses. I went through a little of that stage also, when I was doing more horse breeding than horseriding/driving. I kept feeling the pressure to ride, show, jump, hunt, etc. until one day I said to myself, "Been there, done that" why take chances? So, I am more than happy to just go out with my similarly aged friends and mosey along. It's easy on my body, carefree for my mind, and just plain fun.
The dun is a Morgan... really cute, isn't she? The cream is a Ky Mt Horse. Mine is an Oldenburg. Mine is older, but the other two are quite green.
The next three days are going to be spent doing as little as possible. Pool, hosing off horses and keeping an eye on my outside cats. This heat kills.
Best to all...
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Heidi- Hey that was my second guess, but never would have known the other two ( have heard of the KY Mt horse) . I will have to look them up on line. They are all beautiful, paints are my second favorite color, black is my fav. Hope everyone is staying cool.
BernieEllen-nice to hear from you, been wondering what was up. Life is busy, even with the big "C"
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Kymn- have fun camping....we have for the last 2 weekends, I am pooped and ready for a weekend of nothing! Although the Fair is in town.....if I get the ok on my counts tomorrow, maybe a short trip for a gyro--yumm.
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Titan: My PS volunteers at the county hospital here and puts digits back on all of the time. I hope you have a good microsurgeon for your son. Hugs and we are all thinking of you today!
Heidi: Your horses are just gorgeous. All the horseback riding near me is in the hills around Griffith Park and the Hollywood sign above los angeles. I can't imagine how fun it would be to go riding on a horse in water. Love it! Thanks for sharing.
Got a bunch of blood work done today and I am being tested to see if I have Addison's Disease. Haven't been doing so great so I haven't been on much. Hope my dr. can figure out what's going on with me.
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Dear tnbcRuth - thanks for the info on Lyrica for neuropathy. I shall look into it if things get worse. Titan - I am praying that everything turns out well for your son, sorry you had to go through it. Sometimes I feel that I get sicker when I go to ER.
Ladies, I just want to give you all my good news. My PetScan was normal, clean and no metastases. There was only one little thing - they call it enhancement in the R. Breast which doctors think is no big deal. I also have a clean MRI of both breasts, which does not mention the enhancement in the R. Breast. The surgeon said the MRI takes prescedence over the PetScan as related to the breast. Anyway, I am still gonna do a mammogram and ultrasound just to make sure, the enhancement is nothing. The surgeon said, it is not a mass, just an enhancement. The next MRI is in 6 months.
The doctor's office called me. Maria said that your results are out, but please hold on for the doctor. I started crying so loudly, just couldn't control myself. I thought that within the next few minutes, my destiny will be decided whether I will spend my next several years being sick, taking in more chemo and face death, or not. My God, the emotions were too much. The doctor said to stop crying as there was nothing to cry about, the petscan was clean. I did not hear him and continued to cry louder. Why do we have to go through such crap? They don't plan to give me a petscan as part of my ongoing checkups, but only when there is pain or something developed then only will they check. It is not easy to hear bad news.
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Lovelyface: Sooo happy for you!!
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Lovelyface: Such good news!!!! Hugs!
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Lovelyface - great news!!
MBJ - I hope they can figure out what is going on
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lovelyface, great news!! So happy for you!
MBJ I hope you feel better soon.
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MBJ, Hope everything turns out ok with your tests.
Great news, Lovelyface!
Thanks for posting video, Heidi - that looks like such fun!
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MBJ- sorry to hear you're not feeling well. If I may ask-what is Addison's disease?
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Lovely face so happy for you, the crying can be so overwhelming,sometimes I dont think we know how much this has affected us then it just comes pouring out.
Rella I love gyros lol
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Testing
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Yay, you got it posted! Love the shirt.
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Riley thanks for the info. I just have to get an avatar now.........:) I wanted this to be it but according to the lady I have to resize it. I like it when the link does it for you...:)
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