March 2011 chemo-lounge
Comments
-
Stilts, I have never heard any more from the mayo study, but I am looking at a phase 2 vaccine trial for early stage her2 positive folks that I hope I get into. That is what I am most paranoid about anyway.
0 -
Lily,
That just sucks! I am stunned to hear your news. What a shock and disappointment for you. I don't know much about the meds but praying for all the best that they kick the sh#t out of the damn interloper cells, pardon my language.
I am amused that you were prescribed Concerta. I have students that take all kinds of ADHD meds including that. Who'da thought you'd be on that? I can speak to the joys of Ambien, Ativan, and Cymbalta however. I did quit the Cymbalta twice. Evidently cold turkey quitting is not a good idea so had to go back on to quit. Then I quit the Ambien. That was much easier surprisingly. I refilled the rx though, just in case I'd need it again. Honestly sleep aids were better than anti- depressants. And the Ativan is n for nights only. That's my story and I'm sticking to it.
If you can gain extra benefits from the Concerta like weight loss and energy to get stuff done, more power to you. I'm just surprised it doesn't keep you awake as that can be an SE too. I hope you still got your trips planned. It's important to have things to look forward to. Please keep us updated, for although we're all so sad, we are here for you during high energy days or the sluggish ones too.
On my soap opera today they featured a support group for veterans of Iraq and Afghanistan. Somebody quoted a WW2 vet: "For those who were there, no explanation necessary. For those that weren't, no explanation possible." That is how we are.0 -
Lily - You are so strong and so positive, I have no doubt that even though you've had a slight setback, you will be back to kicking cancer's a$$ after you have a good cry. I am hopeful that the new pills will be effective. Enjoy the effects of the Concerta. My doc gave me something to help me get past the fatigue left over from chemo. I think of how many times you have gone in for scans, surgery, etc. and the news has been so very positive. I can't help but believe that sometimes this battle, too, can be mind over matter. With good drugs and precautions and weight loss and all the other things thrown in as insurance policies.
My one year anniversary of the BMX is tomorrow...I'm sad and happy about it at the same time. Sad about all I've had to give up and all I (and all of us) have been through in the past year. But happy as it marks the time when the slate got cleared, so to speak. I know you all understand what I'm trying to say. It does mark, even more than 1/1, the starting point of the rest of our life, too.
0 -
Thanks for all the kind thoughts. It cheers me to read of the triumphs you are all achieving. School and work and vacations, perky boobs, curly hair...what a fab group!! I am proud to be a part of it. By the way my hair is still only 1/2 long-and wierd. I have so many cowlicks-it can;t figure out which way to grow. I will be off the Herceptin which slows hair growth down and on to Xeloda which thins it out. The Tykerb causes an itchy acne-like rash-OMG it is my teenage years all over again. Skanky har and zits-
I picked up my new meds today. Co-pay of $52 for a months supply-I thought that was pretty good. Some women are paying upwards of $1000. I will be taking 9 pills in the morning plus 4 more at night. In addition to the supplements I take I will need one of those medicine holders with compartments the size of coffee cups!!
Part of them are empty stomach and the others are with food. Some of the ladies have said eating a fatty meal helps with the stomach pain. My mind immediately went to a big plate of french fries with a chocolate shake. I am not going to start them til saturday so I can see what happens with out the pressure of being at work. It isn;t like the cancer will grow between now and then.
I continue to feel fantastic other than the bad knees from the Herceptin-have not seen anyone post about joint pain from the new stuff so hoping it will go away as the Herceptin fades away.
I have felt like an extraordinary cancer patient til now---felt like my body was this superb healing machine-now I feel like it has let me down. It also feels like I am starting over-but not in a good way. Like Barbara said it is like the clean slate -putting the bad behind and moving on to deal with whatever new challenges come up. The realization that I will be in treatment for the rest of my life is just so daunting. Those women put a brave face on and deal with it-as will I-but damnit I just want to wake up in the morning and feel good again. The new list of things I cannot or should not do just makes me furious. And this is while I am on the "easy" meds for Stage IV. Every time a med fails you move on to something less effective and way harder on your system. Hoping this is the answer for me-will know in 2 months when we scan again.
0 -
Lilylady so sorry you are going through all of this. I hope and pray that this works and someday soon, you will feel good again!
0 -
Lily - you never know what new medicines and treatments they will come up with. I am optimistic that they will have advances that will help you, so I wouldn't think of anything as permanent. You may not feel like it right this minute, but you are a brave and wonderful woman and I'm honored to know you. You cannot know what the consequence of your positive outlook is, but I can't believe it's not for your benefit as you continue traditional treatments. Hugs as you start all the pills today!
0 -
Well said SuperSally. I am honored to be in this group with you Lilylady! And I hope that these meds will be the right ones to kick cancer's butt. Will be thinking about you and sending all good vibes and thoughts your way.
0 -
Lily - you are amazing, we are all sending positive thoughts your way. I was reading the other day and they said that while there is no cure, we are getting to the point where cancer will be one of those diseases that they just manage for the rest of our normal lives. There are so many new drugs now. I hope yours do the trick and help your body to beat this, an dthat the side effects do not take away your feeling of health.
Have been out of contact for a while, camping at Sandy Cape Tasmania, no facilities just drive along the beach for a couple of hours and pitch a tent behind a sand dune. Beautiful but I was ready for a shower today after 4 days there.
0 -
Hello everyone! Wondering if anyone else is experiencing no hair growth like me. It all came in and now I can go about three weeks without shaving my armpits or legs. I haven't even had to get my brows waxed and got a brazillian and nothing has come back in. It's so weird. Another weird thing...I am cold all of the time and never was before. Anyone else experiencing this?
Also, chemo curls. What in the world are you supposed to do with these things? Do they eventually go away or are we going to have curly hair forever? That's such a change from the long straight hair I've had my whole life.
I hope everyone is doing well. Can you all believe that next month will be one year ago that we started chemo?
0 -
Colodisney - I have plenty of hair growth...everywhere! I'm taking 5 mg of biotin daily to help encourage it, too. I was always cold before, and now I'm usually hot, so just the opposite. Chemo curls - well, my onc told me I could expect to have them about 18 months. Sheesh, I don't know. I've heard some people keep them and some people who were curly have straight after. Mine is really thick and despite blowing it dry with a straightening serum seems to go back to doing it's own thing anyway. So, my thought is gel and go although It's getting a little long and unruly. Also, I'm only washing twice a week with shampoo, I get it wet every day so I can style it usually putting conditioner only on, but only use shampoo a couple of days. I have nightmarish visions of Bozo clown hair sometimes as I had it died red and now it's a dark brownish red. It really puts it in perspective when you remind us it's almost been a year since we started chemo - wow, how far we've come!
Hope everyone else is doing well.
0 -
I just went and got mine cut again close to my head. It was still only 3/4" long after all this time. It was nothing but pure fuzz-I decided I would rather look "mannish" than look like the ass-end of an ugly poodle. Now that I am off the Herceptin it might grow faster but 1 of the new meds causes thinning. I just started using the Biotin so hoping it starts going. I have had little growth on 'pits or legs so that part is good.
As far as temp control I am a freeze cat now-but just on my upper body. Sometimes I wonder if it is because i have no breasts on my chest? Maybe they were like insulators. I am a big fan of vests now-something I wouldn't have ben caught dead in before.
New meds are doing Ok-but only been 5 days. I am 14 days on/7 off. Most people say they happen as the end of the cycle gets near. Real appetite killer-I am calling that a bonus.
Thanks again for all your good wishes. Not real hopeful about this new combo. It is on almost every Stage IV persons resume but don;t seem to be many remaining stable on it for long. It is however the price of admission to some trials. You have to have failed on certain therapies to make the cut for some of the particular trials I would like to be on. Here's hoping it works but trying to make sure i know what the next step is. We will be scanning at 2 months and that will go by fast.
0 -
I have hair, short and curly. Had my 3rd haircut since Sept, mainly to keep the curls st bay. Everyone seems to like it short but I have trouble with the curls, which beats the baldness I guess. I use some paste or taffy and only wash every other day. I don't now how long to expect. Hair stylist says probably a year or more.
I also have cold flashes. I had a lumpectomy so still have some front padding but I will just get a cold wave wash over me. Not exactly goose bumps but just a coolness. I sleep with a heating pad most nights then toss it over the side after a few hours. No hot flashes or vey rarely, and no night sweats. An occasional flushed face but not too often. It's weird . My husband says chemo just messed with my internal regulation hot or cold.
Lily, sure thinking of you and hoping for atbleast some stability if not outright improvement with the meds. Sounds like you've been looking at some trials. They are cutting edge procedures and protocols so I know it would be great if you could get involved with one of those. Too bad there are always hoops to jump through, most just to satisfy a bureaucrat. Keep us posted .0 -
I might be way behind the times here but have any of you been on Pinterest? Coolest web site I have even been on. Saw it on the news the other night. You have to ask to join but I am on thru a girlfriend. It is just made up of all kinds of blogs and websites that you can attach to your personal bulletin board. Some of the cooking and gardening stuff is great. My boss is thinking I am working on a program for a machine...but I can't get away from this. He said man you are really pinding away at that aren;t you. Good thing he was looking at the back of my laptop and not looking over my shoulder!! And I am NOT a computer person. Not a Facebook, Twitter or any of those other things. You can "follow" people that seem to have similar interests and that expands what sites you might not have seen.
0 -
I am totally addicted to pinterest and facebook lol!
0 -
Me too! We should follow each other!!!
0 -
Ok I log in through facebook, my name is Karen Matthews
find me if you can.0 -
I WANT CHEMO CURLS! AND BANGS! I have little short ones finally. Ithing I am going to order one of those hairpieces for the top and crown area so I can hopefullu style a little.
Im going to check out the pinterest. Sounds great!0 -
I have been addicted to Pinterest for months....it is helping me plan to decorate the new house. I love that website!!!!
Hope my chemo buddies are all doing well.
0 -
I think one or more of the treatments makes it difficult to control body temperature. I am either hot as hell or freezing. I never used to get cold before (built like a seal - well insulated). Camping last week I was realy cold and DH was not. And I have never had neat stroke like I had climbing Mt Augustus before whatever I did.
On our way home now first a 12 hr ferry then - 4,000 Km to drive over Tues - Friday. Had a wonderful time though.Google Penny Cookson to find me, or search for the same on Facebook
0 -
Hey can you guys list your Pinterest names so I can follow you? I just got my official invite today so haven't made any connections yet.
0 -
Hey can you guys list your Pinterest names so I can follow you? I just got my official invite today so haven't made any connections yet.
0 -
Im under Karen Matthews
0 -
Karen,
I found two Karen Matthews on Pinterest...one has two little girls playing cards in the picture and the other has two women, one with a beer in her hand!
I am Kristy Clarke, listed as kkclarke on Pinterest. I'm addicted
0 -
I am so confused. I registered for pin interest, but I got an email that I am on a waiting list? I am Kay Mulhern Greenblatt on Facebook if anyone wants to friend me. Hint, hint.
0 -
Kay, I think it just takes a little bit to get "approved"? I tried to add you but it asks for email address. If you want to PM me, I'll try to add you that way!
0 -
kay, I got my invitation the next day. Screwed up my registration so had to wait another day.
0 -
I'm registered now, but I can't figure it all out. Can't get the pin thinkg to work very well either.
0 -
It took me awhile to get the pin thing downloaded. Just lurk around a bit. Get a feel for it. Let me know you need help and I'll see if I can figure it out for you!!
0 -
Fluff, glad you admitted that-I thought it was just me. Going to a friends house tonight for basic training, I have followers already-my cousins-they must think I haven't found anything I like yet.
0 -
Kristy I cannot find you either
0
