2010 Sisters
Comments
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sherryc......my oncotype score was 48, highest my Dr had ever seen. 32% rate of distant recurrence. Best test I've ever taken... If there was ever a doubt about chemo, which there could have been, my tumor was 1.2cm it was medullary and doesn't usually spread (but was in sential node) now that more nodes were removed last week and showed clear the doubt is still no longer there.Chemo is a must.... Also my orginal dx was er+/pr- and her2-. The first question I asked oncologist was had any of that changed and it had I'm now triple negative. Amazing how ever test sheds a little more light on this beast. We all grab every glimmer of hope. I want to give us all that GLIMMER they have come a long way BABY. I had my port put in last week with node removal I agree bearable.....I just want the drain out. I have an appt. 2morrow. Chemo starts Nov 29....Any good advise???
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AmyJo & Dianemoe: Great news for you both.
Sweet: Hope all went well with the port. Mine doesn't bother me at all.
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Hi everyone, I just got home from having the port put in. I told the nurse to give me lots of meds, that I didnt want to know anything. Well, she gave me 1 dose, and the Dr started, felt the needle. Told her I wanted more, she gave me more. I was still awake and aware. I asked for more again and she gave me 1 last dose of whatever she was giving me. I was totally awake, but didnt care what he was doing, we had a nice long conversation about me winning a contest and meeting aerosmith in Germany, and next thing I knew, he was done. I really wish I would have been asleep though. Im just now starting to feel pain, not sure if its real pain, or preasure from the bandages. Hurts to take a deep breath and when I let my arm and shoulder fall straight down..... so he gave me percocets, I am taking 2 with some soup and laying down.
So, I made it, I wish I didnt remember it, but it didnt hurt. (Thank you god) and to you ladys for all the good wishes.
Kristy
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dianemoe-I don't have any advise on chemo as I did not do it. But I will keep you in prayer
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Hello
im reading about you wonderful girls.GODS ANGELS.donating the hair.luv ya.
yes i was trying to make the decision about the rads.and yes i said YES.im gonna TRY IT.TRY IT.
right now i have too much on my plate to think about it.my GS who had the motorcycle accident is having a meltdown.4 days before his sisters wedding.family crisis to say the least.
the rads are on the back burner for now BUT i did go on the Nov.rads thread.
please keep my family in your prayers right now...thank you
huggggggggggggggs
k
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AND CONGRATS TO AMYJO AND SWEET. wow its nice to seee steps being made.
this bc does really suk.
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Granny--glad you made your decision. We will be here for you all the way through it! I will be praying for you and your family.
Sweet--take those drugs! You will probably only need them for a few days, but it sure is nice to have them!
Diane--what chemo "cocktail" will you be getting?
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Dianemoe: I am halfway through 4 x TC. One thing I will say is that the thought of having chemo is far, far worse than the actual process and, for most people, the side effects. I was prepared for all the horror stories that you hear but, in my case, I could have worked every day if I had to. Not that terrible at all. The best piece of advice I can give you is to join the November chemo group here. I am in the October and it is fantastic to read people a week ahead and their stories. Good luck and be not afraid!
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And mumorange is one of the fun folks in October.
Dianemoe I totally agree with what mum says. Granted everyone is different but I had treatment 3 yesterday and my Nuelasta shot at 7am. I was in the gym by 10am. 35 minutes on the elliptical at 6.5-7 mph level 3 and 35 minutes on the treadmill 4.5 mph walking. My walk pace is the same pace as before surgery. My elliptical pace is lower… I was up to 9 mph.
Granted if my back hurts from the Nuelasta tomorrow I won't be on the treadmill. I'll probably walk in the park instead.
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wow lago, I wish I had your energy..... I dont know if its depression or what, but i seem to have no energy, and I didnt even start chemo yet! Everytime I recover from 1 thing, I have something else to deal with.
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My cocktail is cytoxan...epirubicin....and 5 FU.....Which we know must be ugly. They say two are a push and one is a drip (about two hours). They said to take alieve the night before and a senkot s. Drugs will be in the drip and the next day Nuelasta. I'm hoping to get a rx for the emla creme to put on the port an hour before. Although they are not offering it. I'm hoping my surgeon wil give me a script. Any and all info welcomed.... HUGS Ladies.....
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Dieanemoe I forgot to use the emla cream the first time. Really no big deal. It's not quite as painful as getting an IV put in your arm.
sweetaerobabe I might be on a steriod high too even though I stopped taking them last night. I was up af 5am too. When I get a hot flash after 5 I can't get back to sleep because I'm usually up around 6-6:30.I get more tired on the weekend but still not to bad. Not like I have the flu. I think the exercise is actually helping my energy level. Also remember I'm not working or taking care of kids.
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Diane--that must be the cocktail they call FEC. I had 5FU (as part of a cocktail called FOLFOX)last year for colon cancer. It's not too bad--can cause all the usual SEs, but not severely. Some get diarrhea with it. With the Cytoxan you have to remember to drink LOTS of liquids the first 48 hours. You should be using the bathroom OFTEN. It can cause bladder irritation if not flushed out. Don't know anything about the "e" chemo.
If you have any drugs (like a steroid), take them as scheduled, no matter how you feel. If you still have nausea--call your cancer clinic, there are many different drugs you can take. I had 5 different ones--some scheduled, and others "as needed". If you can't sleep, there is help for that too. If you take a steroid, you probably won't be able to sleep the first night or two. The important thing to remember is to tell your onc or nurse EVERYTHING. Don't just suffer, or try to tough it out. I did that at first, and by the end (after over a year of chemo!), I was happy to take a pill for anything!
I'm one who needs the Emla cream, because even after a year and a half of having my port accessed, it still hurts me. I hate when I forget to put it on. Hopefully you'll be more like lago and not be bothered by it too much.
hugs to you!!
Tina
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amyjo- I'm celebrating your good news. YES! Those cancer markers can just keep moving down, down, down and AWAY! Such great news!
dianmo- Great news about the nodes. Sorry your Oncotype test wasn't lower. As you said, at least you know what you need to do. Now you just have to get on with it. I was more in the gray area and I struggled so much over decisions. Anticipating the chemo is worse than once it starts. Absolutely find your chemo thread. My June chemo ladies have become such dear friends. We all went through chemo together and came out the other end stronger. We'll be right here for you too.
sweet- Hope you get some relief from the port discomfort. That's another thing to mark off your "to do" list!
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Sweet - I love my port. It will take a few days to get used to the lump in your arm, but it makes the treatments and blood tests so much easier and painless, no more needle sticks trying to find a vein that either collapses or blows out.
More good news - Got new RO and rads actually started today. Yeah, I will be finished by Dec. 1st!!!!
Bad news - the SEs from the Aredia are getting worse with each treatment. Have been nausous and vomiting all day and anything I try to eat taste awful. Call the onco's PA and she had him call in Rx that has help. She said next time they will give me something with the Aredia so that I don't have another day like today. She told me I should have called sooner and I could have been feeling better sooner.
I did get a good night's sleep last night, I only got up once and that was because I had to go pee and not because of any pain. Fentanyl is working so good. Hope everyone has a restful night with or without drugs.
Amy Jo
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Good morning sistas,
Just a quick update -- I am feeling better this morning and managed to ride my bike about 10 minutes then decided to stop and not push it too much. Still on flat ginger ale with green tea as it will stay down and not make me vomit. Did manage to keep meds down last night and this morning. I did get a reasonably good night's sleep, only woke up 2x once with hiccups and the other to because I was sweating so much and got cold from my gown being wet and I had managed to kick all the covers off.
Have 2nd rad treatment at 9:30 and DH is taking me then bringing me back home. He was a little upset with me yesterday because I did not call him to come home when I was feeing so bad. I will be really nice to him today, it is his birthday. Just heard him get up to take his shower so I will go get his present out of hiding.
What is going on with the rest of you ladies. You are all in my thoughts and prayers.
Amy Jo
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Off to get the drain removed hopefully this will end some of the pain. Then going to order my turkey don't feel like cooking. DH offered but think the store can handle it and he can just pick it up.My Mother is in Congestive heart failure so just want her to come enjoy. My girls and kids are coming the day after so that will take care of leftovers.AMYJO do hope your day will go good after rads.. I am so Thankful for all you Sistas, all your support and comments. Please have a Great Day!!!!!
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I am looking forward to my last chemo on monday!! yay! then a break from all of this and Radiation starts Janauary
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Hi, I survived the night, and an feeling ok from my port placement. I was sure to stay medicated last night. I took percocet and xanax every 4 hours last night so I slept right through it all. I told my boyfriend to bing home taco bell since I wouldnt be eating that for a long time, which he did, I ate and went right back to sleep. Im about to get in the shower then I can remove the bandages. I think they are really tight and pulling my skin when I move me head, so Im anxious to see if removing them helps any. If so, I wont be so sore from the port.
Dr today for blood, (wonder if he is gonna try out the newest member of my family) or use a vein and cut my poor port a break until tomorrow.
Hope you all are doing well.
Kristy
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sweetaerobabe I bet they use the port. It is awesome you will find. Don't be worried if the scar looks like a dog chewed into your chest, that is what mine looked like cuz he used a ton of the super glue stuff. After that flaked off finally it looks like a perfect line. I love Taco Bell!
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OMG, I feel sooooo much better now that those bandages are off!!!!! I can actually move my head. He must have had everything so thight. And yes, there is TONS of glue and my skin is all wrinkled. It almost looks like there are 2 incisions its wrinkled so bad. Im so glad this part is now behind me, first chemo of TCH is tomorrow morning, and all I will try to keep thinking about is how good everyone says they feel after. It will hopefully keep me from having a panic attack and throwing up in the infusion room. lol My social worker said its usually pretty quiet at the hospital infusion room, and I will have my private area, so thats good. Hope I can bring my laptop.
BTW elaineg - wont having all that glue on top of the port make it not steril to draw blood???
Kristy
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Hey gals,
AmyJo you're my hero!
Sweetaerobabe - just keep repeating "I love my port, I love my port" and soon you will. As soon as they use it you will know why. The first week of discomfort is made up quickly by the first chemo infusion. Hang in there.
Congrats Redninrah, glad you are almost done, it's exciting isn't it?
Iago - I have a 5:30 am hot flash every day, I hate it. I think I could set my watch by it. It also coincides with one of my cats meowing incessantly to come in so I have to get up and let her in too. I can rarely get back to sleep after all of that.
Dianemoe I had FEC-T as have a lot of us on here, so if you have questions, just ask.
Everyone else - have a great day and drink your orange juice! I just got done making juice at work, fun, fun, fun. Covered in peel and pulp, but fun.
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I thought OJ wasnt good for you because of the acid.....
I have seen people name their ports..... Im trying to get to know mine better.... and give him a good name. I believe he is purple.
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Shellyj43..... I think u r right now that it know what FEC means. Mine is x3 also then on to taxotere and dexamethasone also x3. I think the night before I'm to take senokot s and maybe aleve. They say i will have meds in the infusion.They suggest i chew ice chips throughout the infusion to help with mouth sores. I do plan on sucking down the Gatorade. They suggest i eat before hand something like banana and or applesauce.They are giving me Emend and Zofran and Compazine to take home. I do go next day for neulasta injection they suggest Claritin and aleve for that. Anything you can suggest and or recommend. I have veiwed the Nov. chemo site but haven't posted on it yet.Thanks to you ladies for making this somewhat bearable. BEST TO YOU LADIES.........
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diane - If you are interested, consider icing your fingernails during taxotere.
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Hello Ladies - I am new to this forum. Have read it for many days and my heart goes out to all of you having to go through chemo. I consider myself really lucky. Based on the results of both my biopsy and final surgery path reports, my med onc told me there was no need for chemo. I think I stood up and did a happy dance in his office. I know I gave him a big hug. Although I have the same diagnosis, it is hard for me to even imagine what chemo is like.
I am almost done with rads. Have 10 more to go out of 30. Many obstacles and setbacks along the way. Started with trying Mammosite - the balloon would not fit right, had to take that out and wait 3 weeks to start rads. After 3 1/2 weeks, go a severe itchy, rash and had to stop rads for a few days, now am getting pink. My boost starts Nov 29th and I will be done on Fri. My rad onc has been difficult at best and treatment me like crap. Used to dread going everyday and would cry once I got home. Thought at one time about not going back and just taking my chances. Told my BS what was going on and he had a talk with the rad onc and the rad onc seems have a better attitude these days.
Just been a long miserable trip but it is almost over. I know I must sound like I am whining so I will stop for now. I am starting to see the light at the end of the tunnel.
Thanks for listening.
(((HUGS))) to everyone
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Diane---I had the exact treatment FEC-T. I didn't really have any issues through the FEC portion (X3). Two of the drugs are pushed and 1 is IV. The Epirubicin is the red one--that is the one that some people have problems with. My only issue was my veins (I don't have a port or PICC). Epi is hard on your veins. Other than that--take your nausea meds (I had Emend and Zofran) as directed and it will keep the nausea away. I am just about to have my last chemo next week--Taxotere. Taxotere is definitely different--much faster (only 1 drug) but it does leave you with an achey, flu-like feeling. No nausea at all--but joint pain/ache--Doc prescribed me with Tylenol 3 that I took only when it was really bad. Had a couple of mouthsores--but they went away pretty fast. The fatigue was really hard for me on Taxotere--takes a while to feel better after treatment. During Taxotere treatment, Nurse should give you the ice mittens and ice booties to wear. I used them throughout Taxotere infusion. My fingers have some numbness at their very tips but nothing else. The ice helps to keep away nail problems.
Good luck with treatment. Remember every person is so different--here's to hoping you are relatively side effect free!!!!!!
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Sweetaerobabe, you would think that would be true, but it didnt seem to bother them on mine. I was scolded for trying to scratch that stuff off though but it gets very itchy and it looked healed to me. I am so glad I got it, there is no feeling at all to it, especially if you numb it first, they may not use it as new as it is if they didn't give you the cream for numbing yet though. Just glob it on and throw a piece of saran wrap over it to keep your shirt from absorbing it off the skin and you will see no pain at all. Ar you doing 6 TCH? Good luck I have done two and have minor symptoms, learned from first one to drink lots of water and take pills to quash any bad SE's don't try and tough them out. #2 went much better as I knew what to expect, my main SE so far was constipation so I got colace (generic for me) and second time just took it morning and night for day of and 3 days after. Much better than last time.
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YAY RED!!! Almost done!! {{KRISTY}}} big HUGS for you!! And Shelley, HUGS for you, too!! Welcome Jo, and here are {{HUGS}} for you. I would change rad oncs ASAP!!
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Hi, I just got back from the onc office, and was told the hospital does not use the freezing spray, so the Dr wrote me a script for the cream. Thank god. Since my neulasta shot will be on a Saturday, they will make an appointment with the emergency room, and they said I should be able to just walk in, get the shot and go. I also got a script for the steroids, took 2 already, then 2 before bed and 2 times a day for 2 days after TX. Hopefully all goes well tomorrow. I cant eat in the morning, but I guess Im gonna have to find something light to eat. Im starting with the water already.
Ill post tomorrow afternoon when I get home. Oh...my muga was 62 and the Dr said that was well within normal range. Thank you for all the support guys. I really appreciate it.
One more thing, doing TCH x 6. do I take tylenol or advil?
Kristy
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