March 2011 chemo-lounge
Comments
-
God I cant wait for this Fn year to be over. AARRGGG. have my first follow up apt on wed am feeling nervous then have court date to deal with my X on monday again feeling nervous, please send lots of positive energy this week girls I really really really need it
0 -
U got it Kymn! Lots of prayers and postitive energy coming your way!
I have a ct scan tomorrow so I need it too!
0 -
Penny - The book is a great idea, I'd be honored if you find I have said anything worthy of going in your book. Question about boxing..do you find that your arm and/or chest hurt more since bc while you are boxing or afterwards? I think boxing is so cool.
Kymn & Ksmatthews - Lots and lots of positive energy to the both of you.
0 -
Kymn - good luck with all! Sending cyber hugs!
Penny: The book is a great idea. I have one to share....it happened when I went to my new med onc's office here in Chicago. I met with the nurse and I used the cold caps to keep my hair through chemo. I sat there in front of her with a full head of hair that obviously was not wig looking and after she asked me about chemo she looked up at my hair puzzled. I told her about the cold caps and she said "well,do you think they really work?". I had to stop myself from saying some pretty snarky things. Dah! I have a full head of hair...what do you think it grew back since May when I finished???? (my hair is down to the middle of my back...it's pretty long). I was nice and just politely told her "yes, this is my hair and they do work". I am sure there are countless other things we could all share from the stupid comments people have made to us. The book will be priceless to those of us that have gone through this.
0 -
thanks DeeDee2, I appreciate it!
0 -
Sending positive vibes to everyone with tests and appointments. I hope it all goes well.
Penny-great idea for the book. I have started one that is more of an instruction manual of things the doctors forget to tell you, what you need for surgery, after, etc, I felt like I could find all that information but it was all over the web. I am trying to put it in one place. I may come back looking for advice to remind me.
With the holidays coming, do you all get anything for your docs? I am looking for some creative ideas for my plastic surgeon. I have something for my oncologist, who is very spiritual. My PS is so much fun, I will really have to work to come up with something good.
Send your ideas my way;
0 -
Quick check in...had chemo port out last Friday (Veterans Day) under IV sedation. All went well and am soooo glad that stupid bump is out! Now just bruised and sore. No period since March-that can stay gone as well. Have been emotional lately. Grumpy, tired, weepy. Had started weaning off of Celexa and now wondering if I should have. Instead have upped my Ativan to morning and night, instead of just at night. Not sure that is helping. Hmmm...
I go to the RO Tuesday and MO in December. Saw surgeon two weeks ago. They all want to see me every three months. Someone has got to go! Thinking the surgeon; he is the furthest, although that is where I will get yearly mammograms. Got the letter that said "no evidence of cancer is seen on the current examination:" Finally! In writing! But triple negative still makes me nervous, so will be seeing RO and MO probably, every 3 months for 2 years, and then every 6 months for another 3 years. All they do is look and feel...and charge me for it besides!
Hadn't thought about a gift for the docs. Will be interested to see what others say. I like the idea of the book. I volunteered to be interviewed for one of the websites, Living Beyond Breast Cancer. They had over 100 volunteer, so may not end up doing that, but also looking for bloggers or reviewers. That may be my writing contribution. Feel like a story is in all of us! Kymn, sending strength your way. Glad the rest of you are done or close to done with rads. I didn't ring a bell although I see lots do. I got a balloon and certificate. I was very emotional after that, and didn't think I would be. Don't know why I am always so surprised!!!
0 -
Kymn and KS - we are all behind you
DeDee - I don't think my arms/chest hurt any more than before. I get occasional pain in the scar area but I suspect thats radiotherapy. I do an hour with a trainer 3 times a week, some interval training on a bike, boxing and some weights. If my arms don't hurt the next day I don't feel like I have worked hard enough. Boxing is great though as its a great stress buster - I feel much better during the day after I have hit something in the morning
fluffqueen - great idea to get i all in one place - it is alot of work finding it all.
Huskerkkc - good th eport has gone, My lot seem happy as long as someone sees me and prods me about every 3 months, they seem to be kind of sharing it out.
Hadn't thought about a present for the BS or Onc - I gave the chemo nurses little butterfly earings when I left though.
0 -
Good thoughts going your way KSMatthews and Kymn. I know things will go well for you.
Had my every three month echo for herceptin yesterday and am between low normal and heart failure. Sigh, seems like every time I decide things are going smoothly, something happens. First taxol tried to destroy my lungs, sx gave me elephant man arm and now herceptin is trying to kill my heart. Isn't cancer enough? I am starting to think I am more likely to die from the treatment than the cancer. Sigh0 -
kay: so sorry to hear this about your heart! This disease is the worst. Sending hugs your way.
penny: great idea about the book! I don't know if I have included anything worthwhile, but you are more than welcome to use anything.
ksmatthews: good luck with the CT scan. Hoping for all clear! Let us know.
Kymn: thinking of you as you go through all this.
0 -
Kymn, glad to send all positive vibes your way. Hope you post the results of your follow-up visit so we can allcelebrate that. Not sure how Australian divorce court works but I hope they are good to you.
Penny-any book you write is bound to be great. I hope your Mum has some thoughts for you. We haven;t heard you say anything about her lately.
fluffqueen-your idea is long overdue. There are plenty of books that trot out all the same old stuff but the practical stuff you pick up from other people needs to be written in 1 place. I am still paging back and forth trying to decide if it OK now to drink green tea, can I have my BP taken in my mx arm that didn't have cancer, does hair growth products cause cancer-ect. I have read all of this before but retaining it is a problem.
Husker-I SOOO would love to have my port out but it is with me for life. Apparently they dont have a lifespan so as long as it works I will have this one. I am glad your removal went well. That is one more thing to put behind you. Having a piece of a paper with NED on it is also great. We have a lot to be thankful for.
ksmatthews-I saw you posted the results of your CT on another thread. Glad for your good results.
I gave my BS and the people who I dealt with on my 17 follow-up visits hand knitted mittens. I fixed them up in cute gift bags. I also put in a really nice bottle of hand lotion. In the notes I wrote them I told them to take good care of the hands that take care of me. They were all different colors and patterns so they could trade for what they wanted. It depleted my whole stock and I haven't had the time or desire to get started on a fresh batch. I am probably going to do scarves for the oncology people for Xmas. Good yarn is very pricey so while it doesn't look like much it isn;t inexpensive. They are way quicker to do up than mittens. My attention span was so short all summer. I could have done a bushel basket full but just couldn;t settle into it.
On a personal note. I got my herceptin today and had an onc visit. This is the first time I have seen him since my scan. I said I would reserve my celebration for when I could look him in the eye when we discussed it. He was over the moon excited for me. He was so happy he must have hugged me 5 times. then he walked me to the treatment room and hugged me again. He said where I am at now with where I started out in Feb-it just doesn;t happen. Or in only 1%. Bad part of the visit. I have gained 11lbs since 3 weeks ago. I had a hirrible flu and cold and once it got over I have turned into an eating machine. Working out my jaws has produced way better results than working out the rest of my body!!
.
0 -
Lillylady thank you!
My ct scan was all clear! yeah
0 -
Lilylady-that is a great gift idea. I know what you mean about not being able to settle into a project. I had two goals...scan in all the photos, and get a bunch of the photo albums updated. I just couldn't get into it.
Kay-what was your percentage? I started a baseline at 60%, then went to 65% (reading it is somewhat of a judgmental call, I guess) and then last time, I was at 55%, or low normal according to my onc. But, the technician said it was hard to get really good readings with the tissue expanders not being willing to move. LOL. So I am hoping it is due to that. I am due for another one in December. I should be on herceptin until next March.
0 -
Lily - that's great news. Glad your visit with the doc went well. Should I start cracking the whip on you for workouts? LOL! I have been slacking on the workouts since our move...I am still trying to unpack our house. Oh well. We can get back on track.
KS - great news on the scan! Love to hear it!
Kay: Sorry about your heart thing. Are they going to continue the herceptin? What did your doctor recommend?
Penny: I am picturing you hitting a boxing bag with a huge pink ribbon on it! LOL! I have not boxed in a while....that is a great stress reliever. Running is helping me with that a lot right now.
Husker: Glad you got your port out too. I was happy to get mine out ASAP after chemo. Glad all tests were good. I just started on the lexapro and that is helping me a lot. Maybe it is too soon to get off the celexa. It has only been a year since this stuff started - it's a lot to deal with. I tried to do it on my own, but I needed some help. I am sleeping much better now that I started lexapro.
Fluff: I am not doing gifts for doctors. Since I moved they are all new to me so I don't have much of a relationship with them.
Other than that I am waiting for my nipple/areola graft surgery on December 9th. December 8th will be 1 year since they told me they thought I had BC. It was confirmed on Dec 12th. I can't believe it has been almost one year....still can't comprehend all that has happened in the last 11 months. The holidays will be hard since last year I did not tell my family until after the new year....I suffered silently with my diagnosis over last year's holidays. I think it will be hard for me this year. I am glad I started the lexapro. Maybe that will help.
I hope you are all well.
0 -
Hi gang - There's a lot going on for everyone...
Kymn - I'm sending you tons of positive energy. You WILL get through all of this. You are so strong and resilient. Hang tough and lean on us whenever you want to, okay?!
Kay - I'm here sighing with you. So very sorry for your echo results. I'm glad you're at a great hospital. They'll figure out how best to proceed. Keep us posted and hang in there. It will all be okay.
pasmith - sorry to hear about your mil. Hoping everything turns out alright. I'm impressed with how you're plowing through your coursework. It's amazing.
fluff - I also have an allergy to sulfa. Sorry you had to deal with the rash.
DeeDee - It's wonderful that you now have your big date and can spend 2012 planning everything. Congrats!
lilylady - Sorry you're stuck with your port. I was so happy when mine came out. LOVE your onc hugging you repeatedly. 1% - wow! If anyone deserved a miracle, you do. The 11 lbs. are a fluke - you'll drop back down soon.
ksmatthews - so glad your CT scan is clear!!
I know I had more comments to make but they've slipped my mind... I had rads #15 of 28 today. Am so psyched to be done with this piece. Sweet dreams to all. P.S. Penny, feel free to use anything I've said in your book.
0 -
I am seeing cardiologist on Thursday morning. I know all of you also on herceptiIn are interested, so I will let you know what she says. They do not seem overly concerned though. Fluff, I got an echo back in mid March before starting AC and every 3 months since then. It has always been 65, it this last one was 45 to 50. Since I am not having any symptoms, that's a really good sign. I just had number 9 of 18, so have a lot to go still. Will see what they say about getting it again. Btw, not sure if you had AC or not, but that apparently makes it more likely to have heart problems on herceptin.
Silia, half way done! Looking forward to our next lunch.0 -
Boy, it is getting cold all of a sudden. Oh yeah, it is mid-November. How did that happen?!
Question...those of you who had lumpectomies, how often are you getting mammograms? I went for mine a few weeks ago (the first post-chemo) and it was good. Had a diagnostic on BC side and screening on the other side. Surgeon (who is director of breast center, which is why I want to continue getting mammograms there) said "see you in a year" (for mammo), but 4 months for next check. Although he was willing to let me see RO and/or MO as long as I was getting a "thorough breast exam" each time. Great. Then yesterday I went for check up w/RO. Very quick check. Just a look and quick hand over skin to check. Nothing "thorough". He wants me to have a diagnostic mammo in six months, but just on BC side. I can do it at breast center, or his office. So now I don't know what to do. I did a little research and mammos every 6 months makes sense, but what about the inadequate exam? I really thought i would drop the surgeon (except for yearly mammo), but he does a very comprehensive exam. Now I'm thinking it should be the RO because his exams are about 15 seconds long, except that he wants to do more frequent mammos. And what about MRI's? Anyone doing that? I see the MO next month. They all want to see me every 3 months which just seems ridiculous. Or is it? BTW, I'm also triple negative, not sure if that factors in or not.
I have my support group tomorrow and it is run by my nurse navigator (from MO's office). Will run all this by her and the group. Just wondering what everyone else is doing.
And...chemo brain again. I am weaning from Cymbalta, not Celexa. Not that it matters. Maria, you may be right. It might be too soon. I just didn't think it was helping much, but maybe it was more than I realized. Lily, do you have to get your port flushed? My onc wanted me to leave it in for 3 years, but it would have to be flushed every six weeks. He is very conservative and all others (including his nurse and NP) felt it should come out. I figure if (god forbid) I would need it again, I'll get it put back in at that time. But interesting how different everyone's therapies are.
Kay, hoping for all good things with your cardio visit. Silia, over halfway! YAY! Kymn, hope you are holding strong despite your ex's efforts to manipulate. How did your follow up appt go?
Well, I can hardly keep my eyes open. Think I will get my pill medley in order, turn on the heating pad to heat up the bed (and my old bones!), find my puppy and see if I can stay awake long enough to read for a bit. Warm wishes to ALL my March chemo friends!!
0 -
Husker...how are you doing getting off of Cymbalta? I weaned off and was having terrible brain "shocks" is the best I can think of to describe it. Not dizziness so much, just weird flashes like.
Then, when I was having hot flashes so badly, my onc put me on Pristiq as it doesn't interfere with tamoxifen. It helped some with the hot flashes and a lot with the brain issue, so I am sure when I go to get off of this, the same thing will happen.
0 -
Husker, I had a lumpectomy in Feb, and a re-excision in July. I'll have my first mammogram in late Dec. and then every 6 months. I have dense breasts, and the tumor was not too clear on the mammogram, but showed up very clearly on ultra sound, so I don't quite understand why they aren't using other screening tests on me. I go to a major breast center where they have ultra sound machines all over the place and 2 breast MRIs. I have a feeling it is all related to money and insurance. My BS is connected with the breast center, so I see him immediately after the mammogram.
As for all the manual breast exams, they give me small comfort. No one, I mean no one, could feel my tumor, even when they knew exactly where it was. Not the ultra sound tech, not the breast surgeon, not even me. I'll naturally keep seeing the BS because he comes with the mammogram, and I'll keep seeing my MO (he doesn't examine my breasts). I guess the first doctor I'll drop will be my RO. We'll see.
0 -
Husker: I think it comes down to insurance, too. I am going to drop my RO, particularly because it is at a different facility. I had a single MX, and my BS is letting me do an annual mammo and an MRI, with one or the other each 6 months. Like Jules, I have dense breasts (well, just one now) no one ever felt my lump nor caught it on the mammogram; they had to work backwards from the enlarged lymph nodes. My MO does a manual breast exam.
0 -
good morning ladies, My follow up yesterday went well...everything seems A OK although its kind of weird you know not having all the scans etc to be sure but I know I have done all I can for my situation and need to get on with things. My follow up basically includes a mamo in march they want to wait for a bit for everything to settle then see my family doc every 3 months unless I feel it necessary to go in and really other than that im done....it feels odd to tell you the truth I mean dont get me wrong I am grateful that I am done with all the appt etc but just feels weird. As I was leaving yesterday I walked through the big double doors and looked back and was instantly transported to the first time I had to walk through those doors. How I desperatly clung to Al's hand so scared to walk through as that meant that I was a cancer patient fastforward to yesterday and I walk out cancer free....but alone....it was bitter sweet.
0 -
Kymn I totally get you! I feel that way already because I am TN and so now I am done with chemo and rads, so I feel like why am I not doing something....hard to explain.
I was supposed to see my Bs last week, they cancelled because he has took a LOA, I see my onc nxt Tuesday so I am sure she will let me know what happens from here and how oftern I have to do scans and whatever.
Good luck to all!
0 -
PS Lilylady I am from Canada not Australia
0 -
Just checking in...Penny, the book sounds exciting...one incident that still makes me smile happened last summer when I was definitely suffering from CHEMO BRAIN...missed a stop sign and the lady crossing the intersection stopped and glared at me...I could tell she was really cussing me out !!!...my DD told me.."Mom, just take off your wig and wave it at her"
!!!Kymn...you are in my thoughts...ks mathews...glad to hear about your good results...kay...hope the cardiologist tells you your heart will get back to normal after the Herceptin is done...Adriamycin is also known to cause heart failure...I was really worried after the AC was done and I tried to exercise...my heart rate would go up really fast but has definitely improved over time...
Wish I sould send you each a personal note...I'm thinking of you all !!!
0 -
Kay - sorry about the heart problem, it never ends does it - keep strong though, they have identified it and can manage it.
ksmatthews - so glad your CT scan is good, that the best news any of us can get.
lilylady - your Onc sounds lovely, you're a walking miracle, its such a good result. You can get the extra pounds of over time, I am still way over weight and have a long way to go with that.
Maria - good luck with the next surgery - don't stress over the holidays, celebrate the fact that this bl**dy year will soon be over for all of us and we can all start afresh in 2012.
Kymn - You are not alone sweetie, and you will meet someone wonderful who really deserves you - hang in there.
Silia - more than half way through rads - soon be done.
Huskerkkc - hard to picture it getting cold - it is spring here and is warming up, over 90 deg next week.We do seem to all have different checkup regimes. Jules - I have no confidence on their quick exams either, my tumour could not be felt either. Thats one of the reasons I am having the second mastectomy on Monday.
Thanks for all your comments - I hope I can do them all justice.
Take care and have a great weekend everyone0 -
Ladies, what a week. Went to see my oncologist for normal 3 month checkup and reported that I have been having back pain. Got referred for an MRI that afternoon which then turned into a CT scan. Had to go alone, due to no sitter and having moved 2000 miles away from friends and family 5 months before diagnosis for DH's job. Finally at 9 pm I got the scan. Here's one for you Penny, which I think is the DUMBEST thing ever said to me."How are you tonight?" as I was laying on the CT machine waiting to find out if the cancer had mestasticized. Seroiusly, how am I? UGH! Found out yesterday the pain in my back was not cancer, but a herniated disk which is also causing all of the neuropathy that I have been having in my feet. What a relief! I used to think I wanted to have scans often but now going through this, I am not sure. I can't imagine how hard it is for those of you who do it frequently.
0 -
Colodisney now I am freaking out about the pain I have been having in my neck for weeks. I have not talked to my med onc about it yet.
Kymn even though I am not triple negative and am on tamoxifen I still feel like I should be doing something else. Just learning to live and not think about all of this is really hard. I hope you have continued strength as you move forward and want you to know you are thought of often0 -
Colodisneylover - horrible experience, glad its not cancer related but how stressfull
0 -
Kymn - it must have been awfully hard at your appt (bittersweet as you said) but it seems to me you've rid yourself of 2 evil things. I think of you often. Stay strong.
Penny - best of luck with Monday's Mx. Write us as soon as you can with an update!
Colodisney - so glad no mets but sorry about the disk issue...
Kay - looking forward to your update re cardiologist. I really hope you're able to hold steady and not stress too much. Realize it's much easier said than done.
Maria - While I'm sure your neck issue isn't mets, you shd mention it to your doc. I'm figuring anytime i have an unexplainable pain, I'll mention it since they don't do scans as standard practice...
I know i had more shout outs(!) but happy weekend to all.0 -
Hi everyone. Some info from the cardiologist: she said she sees a lot of patients with the echo differences from herceptin, especially if they've had AC too. She said usually they have high blood pressure or other cardiac problems though, which doesn't fit me. She said she actually likes to see people with high blood pressure because then she has something to target to get the heart back to normal. I am going to skip my next herceptin, they call it a herceptin holiday. She said just that could have my heart back to normal and 80% of people resume herceptin and finish with no further problems. She said she was going to be aggressive with me and give me a low dose beta blocker to take some of the load off my heart. As long as I have no problems from that, I will stay on it until I am done herceptin. Getting another echo in 5 weeks to see what it shows and if I will be able to get back on herceptin. She really wants me to finish the year. Funny, I am not sure about my onc. I guess with the pneumonitis from the taxol and now the heart problems from the herceptin, she is scared to give me anything. I told her I didn't want to survive cancer just to die from heart problems and she said she was glad to hear me say that. She told me 3 weeks ago that I was beyond the point where most people would have a problem with heart if they were going to, but you never know with me. I think she jinxed me! LOL. Mentally, I am doing good and just riding it out. Thanks for asking!
0
