Chemo in Sept 08
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Chris - That's great news!!!!
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Chris, that's awesome news!!!
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Chris, so glad to hear the scan is clear! yay!!! Happy moving! check in when you can!
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Chris....so happy to hear you had a clear scan....that's great news! I've been MIA....been busy fighting in Mafia Wars.....MY stress reliever!
Jane....glad you are at least able to work. How's the swelling doing now?
To the rest....HEY!!! Love ya'll
My AI is NOT doin good. I've not taken any for 5 days now. I sent my Onco that I had when I was goin through chemo, an email. He moved to NYC....and gave me his email address before he left. I asked him for advice....I trust him. I'm NOT gonna hurt like this for the next 4 years. I have no quality of life whatsoever.....and I'm not gonna live like this. Every day it's the same........pain, pain, pain. Lortab's aren't touching it!!!
I'll let you know what he says.....hugsssss
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Hi Girls,
Genia, I hope your old oncol comes up with a plan for you, and I hope it is soon. Take care x
We leave Singapore tonight, I have just said good bye to my dear chemo girls here, so sad, i will really miss them all. I am so glad that your girls aren't going anywhere.
Next communication will be from Holland. bye for now
Singapore Chris x
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Chris, Yes...WE ARE NOT GOING ANYWHERE!!!! Check in when you can!!
Genia, I am glad you sent an email. Quality of Life is important! I am so glad you have Mafia Wars to keep your mind off the pain somewhat....
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Thanks ladies....
I received an email from him that basically said if I was in this much pain I should stop the medication. He also said I should maybe go back on the Tamox....but I had all these same side effects with it too. I know the new onco is gonna wanna try Arimidex or Femara. I can't see where these would be any different. So now I'm faced with some decisions. Not sure what to do at this point. Have you all heard what the percentage of recurrence is TAKING the AI's as opposed to NOT taking them? I've tried to find the info, but so far haven't had any luck.
The Dr put me on Cymbalta 3 weeks ago, but told me to wait to take it until I had been on the Lyrica for 3 weeks. I started it yesterday.....In hopes that it would help some of the pain. I'm sure it hasn't had time to yet......but I have my fingers crossed.
love you girls.....and Chris.....good luck with your move sweetie!!!
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Genia - I've heard of girls that take a break from Tamox or AI's and when they go back on them, the SE's are not as bad. I hope this for you! You can always try 10 mgs of Tamox (like me). I only have hot flashes, no other SE's.
The winner of the BC Survivor Cruise should be chosen this week!
Crossing fingers for all of us!
hugs
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Well I'm off of them as of a week ago. I just can't STAND feeling that way. What good does it do to take something that makes you feel like that to prevent a recurrence, if your quality of life is almost crippling?
Juli....was there a contest you had to enter or are you automatically entered when you sign up for the cruise?
Love you all.......
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Genia - Do you feel any better OFF them? If not, then that's not what's causing the SEs.
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Genia, I think it can take up to 6 weeks for an AI to build up and then flush out of your system. Hopefully you will feel better soon. I think the reason you are getting all these aches and crippling pain is that the AI is totally zapping all your body's estrogen. All AI's work this way. Not having estrogen in your body causes aches and pains, cognitive issues, bone issues, heart issues.
I agree with Jules. How about half a dose of Tamoxifen? Tamoxifen is not known for aches and pains, hot flashes yes, vaginal dryness yes. Your estrogen still flows but the tamoxifen attaches itself to any cancer cells, so that your estrogen can't get on it. This starves the cancer cells by blocking them from estrogen that feeds the cancer cells. But the estrogen is still flowing in your body. so you don't get all the SE's you do from a lack of estrogen. (You do get other SE's though, sadly...)
Hope this helps. this is my lay person's understanding of it anyway.
I totally agree you should not live 4-5 years crippled because maybe the AI will help you. They don't really have a way to tell who it will help and who it will not. Statistically, those on an AI have less chance of recurrence, but it is like this (example - these are not the real numbers, but an example of the difference). Women not taking AI's: 9% will get a recurrance. Women taking AIs, 6% will get a recurrence. so they say, 33% less women will get a recurrence. This is the difference between absolute (the 6 and 9) and relative (33%) statistics. It sounds way the hell better than it really is. I hate to say it!! It is the same for Tamoxifen as well.
Ladies, correct me if I am wrong. But what you know is that you are 100% miserable and that is a friggin fact!! I can take tamoxifen with minimal SEs, they are livable. I know at the 2-3 year mark, my ONC will want me to switch to an AI. I personally HATE the idea of supressing all my body's estrogen. I may try it, or I may just stay on Tamoxifen. I'll tell you one thing, if I try it and don't like it, I am off it. Screw it. I am not sacrificing my daily Yoga, and daily 2 mile walks for a friggin pill that may or may not help me. that's me.
I HATE CANCER. I can't believe these are the choices we live with. I think my GF's who are ER- have it easier, honestly. When you are done with Chemo and Rads, you are friggin DONE!!!! (unless you are HER2+, but that doesn't go on for 5 friggin years or more either!!)
Boy, listen to me. What a vent!!! Sorry. This whole thing just really buns my butt!!!!
Love you girls.
Love love love, Spring.
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Yes Jane I do feel better....last night I even got up and did Zumba. Not for very long...but at least I felt like doing some of it. ZUMBA would have been the LAST thing I could have done on the AI. I also did my dishes and cleaned the kitchen.....this is so much more than I was doing.
I started taking Cymbalta two days ago...and I'm still on the Lyrica. So I don't know if that is helping me feel better or just being off the Aromasin. But I do feel much better.
Thanks for the vent Spring....really it did help me. I want a LIFE.....and not even being able to do my dishes with hurting so badly I can't stand up.........is NOT a life!!!! I know I can't take Cymbalta with the Tamox. I really think it will do me so much good. My niece took it and within 5 days said she felt like a new person. She had to go off of it because it caused her to have severe diarrhea.....my other niece takes it and is doing fantastic on it. I know Cymbalta helps with pain.....so I'm willing to try it to see if it will help me too.
I know one thing....I'm about as confused as a person could get right now. lol
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Genia - go to the survivor cruise site and click on the link to enter for a free cruise.
Spring - I'm with you... I will fight like the dickens to stay on Tamox for 5 years!
hugs
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Genia, it sounds like you are already feeling much better just a few days off the AI. I am glad. Hang in there girl!
I am still limping along in MW!!!! Not doing so good, but not giving up yet! LOL.
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Well the leg pain is so much better I've only had to take two Alleve today. My husband found out I haven't been taking my Aromasin and he got really mad at me. He told me to get back on it TONIGHT. He's so afraid that the cancer will come back. Here's my theory.....there have been plenty of women who took their Tamox or AI's.....and still got a recurrence. I know it does lessen the chances....but what good does it do if I have so much pain. Honestly....I've thought to myself....if this is as good as it gets....I'll just end it all!!! NOT a good way to think.
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Genia - whatever decision you make - I'm behind you 100%.
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I know ya are Jane.....I'm just at a total loss as what to do at this point.
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I got my hair permed on Friday. I'm still experimenting with it though. She blew it out and curled it at the shop and it looked ok. I left it that way on Saturday. Yesterday, I just washed it and let it air dry. That was ok, but it's so soft, it looks fluffy. Today, I curled it with my curling iron. Next, I'm going to try putting mousse in it when it's wet and seeing how that drys.
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LOL...Jane you're getting perms and I'm trying to straighten this mass of curls I have.....too funny. I think when I get it cut....the curl will mostly be gone. As it grows the curl is on the ends where it first came out. But I still have a time trying to style it into SOMEthing that looks decent. I need it cut in the worst way....need to do that soon.
But I'm not complaining........this time last year I was freezing and was just starting to grow some hair!!! lol
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Genia, I was also thinking that maybe next hair cut the curls may just be done??? I will be okay if they are done. I will be okay if there stay a while longer. but I am starting to miss my straight hair a little....
Genia, I am behind you 100% too. Maybe you need to explain to your husband that even if you take it, there is no guarantee, the only guarantee is that you'll feel miserable, that is for 100% sure.
I am so sorry, it is a hell of a thing to deal with!!!!
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I think my curls will be gone in a couple more haircuts too! It was nice never using a blow dryer, just scrunch and go.
Jane - I agree with Jane & Beverly...And look at all the treatment you DID have. You even made it through Herceptin.
hugs
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My onc took me off the Femara yesterday. He said to go a month without and see if my SEs go away. If they do, he's going to try Aromasin to see if I tolerate that better. Also did bloodwork, tumor markers, etc. Before BC, if I had routine BW, I never worried about the results. Now, I know I'll worry the rest of the week until I find out everything is normal. It's like always waiting for the other shoe to drop.
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Jane - Hope you feel better soon!
I feel like re-scheduling my upcoming doctors' appointments from March to April (or later). I've had it with doctors and I want to be in denial for a little while since I'm feeling good. Does that sound wierd?
hugs
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Heck no it doesn't sound weird Juli.
I have Dr. cancellitus goin right now. I keep rescheduling appts constantly. I don't want to go and just wanna be left alone.....unfortunately right now I can't until they figure out why I'm constantly hurting and get that squared away. I was supposed to have an ehco of my heart done Tues.....because the Dr. wanted it after I had completed the Herceptin.......and there was NO way I could have laid on that hard table for an hour while they did it......so I cancelled that until I go into see him. It would have taken 4 strong orderly's and a cabana boy to have gotten me up from there!
I totally understand where you are coming from.
love you all
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I'm on Femara and I've had the muscle pain that Genia talks about. It hurts to stand up, get out of a car, walk, etc. But the thing I've noticed is that the more I keep going, the better I get. So if I just sit, it is awful, but if I set a timer for say 15 minutes of moving around, I feel better after that 15 minutes. I know that's me and it may not work for Genia, but thought I would throw that out there for those of you that may switch at some point.
Of course, some days are better than others, and I'm trying to find out what drives that.
Last night I went to the ER as my heart was feeling flippy and my pulse kept varying. 65, then 86, then 62, then 100, then 75, etc. That doesn't usually happen, so better safe than sorry, I went to the ER. My potassium was low, but they also discovered my Thyroid seems to have stopped working. I read on this site that the hormone meds can interfere with the Thyroid, sometime about the proteins binding to something (you can search and find it in the ask the expert section
) Anyway, get to add another doc to the list, endocrinologist!! Woo hoo! Can this be my excuse for my weight gain instead of the rice krispy treats and king cake??? I'm going for it! Will order another king cake!0 -
Genia - I had an echo last week and my ejection fraction is up to 42 (from 40). At this rate it should be in normal range in a year.
Colleen - sorry about your thyroid. Definitely is the cause for weight gain.
hugs
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Colleen, hang in there! Sorry you had to go to the ER.
Jane, I did not know you were in unbearable pain as well??? I tell you girls, this is making me want to stay the heck off of the AIs!!! Colleen, Genia, and Jane, all three? I guess only Chris is doing okay on it so far...
Julie, I totally get you. Take a break! How goes the cruise stuff? You girls all set?
I had to have an ultrasound due to lump on prophylactic side, but they say it is nothing bad. I need to have a radiologist ultrasound on Monday, just for tracking. I think they think it is fat blob or whatever. I am also in Lymphedema therapy 3x a week for at least 3 weeks, did I tell you this? Edema on side of rib cage and back. Finish week 1 tomorrow.
So I hear you Jules. I am sick of all this. I just want to be left alone too!!!!
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Colleen....the moving doesn't help me. It HURTS. I think I told you all about the last time I went to Walmart and got halfway through the store and thought I was gonna fall on the floor. Panic set it when I thought about having to get a store worker to go get me a scooter. I sat down on a bench for a little while and finally made it out of the store. Doing dishes almost kills me but I make myself get up and do them. I can work about 10 mins and then I feel like somone has a knife in my right hip grinding it around. I was thinking of signing up at the gym for some excercise....but I honestly don't think I can do them.....so at this point I feel it would be a waste of money.
I lied to my husband and told him I was taking my Aromasin. I didn't wanna hear him lecture me about not taking it. I'm staying off of it until I go see the Dr. Was supposed to go today......but got cancellitus and didn't go. I wonder if everyone gets like this.......just not wanting to go back to a Dr ever again.
love you ladies
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Jane and Genia...So sorry to hear about your pain and fatigue. After all you've been through you shouldn't have to deal with more pain. I recently read a study that high dose Vitamin D helped ease the pain women experience while on AIs. Here's the article..
http://www.asco.org/ASCOv2/Meetings/Abstracts?&vmview=abst_detail_view&confID=55&abstractID=34193
The next time you go to the doctor ask them to check your D level. You want to get your level up above 40...preferably in the 60-80 ng/ml range.
Spring...Sorry to hear about your lymphedema. Sometimes caring for these bodies feels like a fulltime job!
Hang in there ladies!!
Li
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Thanks Lili.......I had heard of Vit D levels and the range they should be in but never heard of taking mass doses of Vit D to prevent joint pain. Very interesting.......
Beverly....I totally missed your post somehow. Sorry to hear you have lymphedema......and I hope they get it under control. I still have bouts of it. And lately my scar area is so hard.....that it hurts. The tissue under there is rock hard and when I raise my arm up it feels like my muscles are ripping.
I found something online that made me just shake my head when i was looking for AI's and the side effects as far as joint pain. Just BLEW my mind that there are men that are this vain.
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