Calling all TNs
Comments
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LJ your paintings look GREAT!!!! Very nice.
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Fighter: I was told by my Onc that our periods can come back up to 18 months after chemo, but when I had a blood test, I was officially in menopause
. You are younger than I am, so maybe yours will come back. I haven't had one since Nov 2009 when i started chemo. re Libido: My dr. put me on bioidentical hormones which has really helped!!! Another option is the estriol cream taken internally and topically which is supposed to help with the dryness. Pregenolone is a hormone that boosts libido and what your body doesn't need, it just disposes of it. We should all be on it and I plan to buy some today. It is safe compared to DHEA, which can do some damage.
Laurajane: I hope things eventually get back to "normal" in the hot and heavy department with your BF. My DH and I had to use toys and lube to get me in the "mood" through all of the chemo and surgery and stuff and it was pretty rough for a long, long time. I am hoping adding the Pregenelone to my daily supplements will up my desire, cause lord knows we all need that!!! I have heard of toy parties but have never been. What a hoot!!! I say, whatever works!!!
Babs: I slept sitting up surrounded and propped up with pillows and even bought one of those wedge pillows for watching TV and eating in bed until I was no longer sore. It took a really long time before I could sleep on my back and side without being in pain. Give it time and take it easy. I am so happy you have such a great friend to help you out in your time of need. Gentle hugs!
cc4npg: So glad to hear your surgery went well! That's alot to go through for one day. I am surprised you are already on here, but that's a good sign!
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Laurajane: Wow, those are gorgeous!!!! I am speechless. I took a Healing with Art class during my chemo and I was so surprised that I could still draw. I suck with oils, but I love using water colors. Absolutley beautiful. Thank you so much for sharing. You should get an agent and have a art show. Really. Your stuff is that good. People need to see this!!!
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WRT (with regard to) Libido, etc.--- I just hang out with Con Ed... no fuss, no muss, a little dab will do ya..... YIKES!
Check out the "OMG they found a cure for stupid" thread! We're having fun over there!
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Thanks ladies, I dont feel so alone in this
It just all seems so strange. We go through a year or more of poking, proding, testing, surgeries, poisons then nothing. Go on your merry way your fine. Really fightening. 0 -
Angelisa- Glad to hear your surgeries went well. I'm sending positive thoughts for rapid healing!
JenC- No scans for me either. Just like the others ladies have said- only if I have continued pain for over 2 weeks would a scan be ordered.
Laurajane- You are very talented. I always have wished I had the give of art, but sadly even my stick people are lame!!
My husband has not even tried to get anywhere with me since surgery. He says he is not disgusted by me, but afraid he will hurt me. Excuse?? Maybe. Once my exchange is done-we'll see!!
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Hi All - checking in after a long break. I am just finishing Cycle 4 of 6 of the Gemzar/Carboplatin/PARP trial. Was having an awful time with ongoing nausea, headaches and sleepiness until this past week. They switched me from Zofran to Kytril and it has been night and day! I am now doing Emend the day of chemo and 2 days after, plus Kytril every 12 hours and Decadron morning and night. I feel like Superwoman compared to how I had been doing - might even get the laundry caught up this week!
My visits with the oncologist have been good - steady shrinkage in the tumor until this week - no change between my chemo on Day 1 of Cycle 4 and Day 8 of Cycle 4 so I am going to have some ultrasound studies this coming Thursday to get a better measurement of what's left. She indicated that some larger tumors leave behind scar tissue that doesn't shrink and that might be what's going on...I of course am thinking the worst - will be nice to get some new info on Thursday.
I've begun the process of thinking about adjuvant chemo after this trial is done and am intrigued by the study that said taxanes first before anthrycyclines....going to be sure and ask about that. But you guys are right - each study seems to conflict other studies and it just sucks that there's no obvious right answer!
LauraJane - great news on your clean PET and your paintings are wonderful!
JenC - I've been given the same info re: followup studies. Both oncologists I've seen have indicated they'll do physical exams and bloodwork but don't typically order a scan unless there's pain that might indicate bone mets or liver stuff in the blood tests that might indicate liver mets, or coughing/popping in the lungs that might indicate lung mets. I think they both would order 'mental health' scans if I was adamant and freaking out (I think that's why I'm getting U/S on Thursday). But I agree it's a little scary to be without some more 'concrete' data on whether it's coming back or not. I SOOOO envy you guys that are already past the treatment stage and counting to the 3 year mark - I know (hope!) I'll be there someday too but right now it feels like a lifetime away....
Anyway - hope everyone has a good week with minimal SE's.
dlcw
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Wow! thanks for letting me share my paintings with you and thank-you for the compliments. there is an art show this Saturday and I was asked to submit one. I just can't decide which one. So I'll take a poll if anyone has a suggestion on which one to submit. I would love to everyones art work on here. Wouldn't that be exciting?
I went to my onc today and you know what really hit home with me was her scheduling my port removal. I was like, really? I think her comment really made me realize that this has worked. I will be starting rads in a couple of weeks. Luckily they will be down here and I won't have to make that drive every day. She said that the rad specialist here is fabulous and she refers many of her patients down here.
DICW- I am sorry you have been having so many SE's from your chemo cocktail. I hope it gets better for you.
TIFJ- My BF told me the same thing.
Fighter- Last time I was in NYC was the first time I've shown my boyfriend what I look like since surgery. Once rads are done I can look forward to recon. YEAH!!!
MBJ- I'll check that out. Is it a prescription?
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Darn, my MRI was recheduled to Thursday 6:30 PM. Don't these people have any compassion??? lol. I am starting to truly believe it is due to my anemia, but the mind does wander...to make matters worse, I am 8 days from surgery, and I'm feeling some stuff in my breast I don't like. At this point, can't change anything, but now I don't know if it is scar tissue, or new tumor growth. Ugh. The waiting during this process is a nightmare!!
Laurajane - what lovely work! I particularly like your more abstract images...very compelling. I used to draw back in the day with pencil and charcoal...but your work is just beautiful.
JenC - my doctor won't do TOO much. She agreed to give me a PET scan about 12 months after chemo as I am node-positive and she wants to rule out a quick recurrance. I'm getting a brain MRI this week for some strange head symptoms. Otherwise, only as needed.
dclw - I'm glad you are getting through your protocol and finally have relief! I also obsessed about my tumors shrinking, boy can I relate.
Angelisa and Babs - I'm glad to hear you both are healing well. It is good to hear these stories before my surgery next week so I'm prepared.
Libido - um, what, where? Chemopause has pretty much destroyed any libido I had, and it doesn't help that I feel extremely unsexy with no hair and cancer-filled boobs. DH has been patient, but I don't know how long that will last. I'm willing to venture into the lube and toy department for help if need be, but right now, I'm just not in the mood. Need to work on that I know.
Fighter - my Onc most definitely does NOT want me out of chemopause. I'm 41, so she doesn't think it will be permanent. She wants me to take Tamoxifan (5% ER+) and is always asking me if I'm having hot flashes, etc., so that she can measure if I'm truly in menopause.
I'll update when I have my MRI results. Hopefully my doctor's NP can call and give them to me on Friday, otherwise I'll have to wait until Monday....tick tock...tick tock...
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The PET Scan showed that chemo has shrank the masses. Only 1 lymph node is still showing up on PET, and the breast mass is much smaller also. We ( BS, Onc, and I) all knew everything was smaller, but the Onc, wanted a post chemo PET to see what it was showing since the tumor markers were fluctuating. They would be in the "normal" range one time and then go back up the next time. I will be having surgery this coming Monday, and then be off work for a minimum of 4 weeks.
Oh,off topic, the Onc made me feel really good today. I am a Nuclear Medicine Technologist, and scanned another of her patients last week. She told me that this patient came back telling her how well she was treated by me. I just love hearing those stories. I do not want to be one of the techs that get talked about on these threads about how badly they treat some one. I want to treat everybody like they are my favorite realtive, or at least how I would want to be treated. I know sometimes that is not possible, but I do try.
Edited to add: My Onc did say that if the BS or PS felt that they neede to remove my Port during surgery that she didn't have a problem with that. I was like what???? Then she said that she didn't think I would need more chemo. I really want to keep the port in until after the post-surgical pathology report personally, but I guess it will depend on the PS even more thatn the BS who will not be working on that side.
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Hi all! Laura jane - beautiful paintings. Do you paint professionally or just for fun? I started to take a painting class a few years ago as part of my "balance my right brain self and job with some left brain activity" plan. I decided instead to study Italian. Now that tx is over I want to get back to doing something for fun so it is not just work work work - I may have to look into painting again. I have absolutely no artistic talent though.
So, my first follow up with my onco was this morning. It went well. My blood looked good with the exception of high blood sugar. It shot up during chemo, which we thought was due to the decadron. I expected it would go back down, but it hasn't. Has anyone else had this happen? I have not been exercising like I normally do because of treatment (i.e. the last 5 months) which may be part of the problem. My skin has now healed over from rads, so back to exercise starting in the morning.
Suze - did you do rads? I have been following your headache comments. I have not had headaches, but have had a weird feeling in my head that I could never quite describe to anyone. Upon my hesitancy in trying to come up with a word to describe it today to my onco she immediately offered "swiminess?" LOL - I think that must be the medical term for it. It is the perfect word for it. She said she sees that a lot with patients post rads and suggested I give it about a month to go away. I has been less noticeable over the last week, so I feel reasonably comfortable that it is rads. I hope so anyway. Anything out of the norm is just so stressful.
No mammo for me until May - they don't like to do them this close to rads. Fine by me as my breast is still sore. And I will get an annual MRI - my onco agreed to it with no argument. I was glad about that. I detested the MRI - it was truly the most physically uncomfortable part of this for me - but I do not trust the mammos to effectively screen for tumors.
Regarding the DC trip, I think I have decided to pass. I would absolutely love to meet everyone. You all seem like such fun. But I am going on a trip the week before with my college friends and I spent the day today booking spa treatments for that - the spa treatments are going to wipe out my DC budget (and then some). Have a terrific time and be sure to post pictures when you get back!
I hope everyone is doing well!
Lisa
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Hi everyone, saw my onc today and my genetic test results were negative. I seem to experience some mets/progression of my cancer even while on Xeloda. I shall start lxabepilone weekly chemo tomorrow and hope we will be succesful this time.Any thoughts or experience with this new chemo.
cheers
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And I intend to stick to this sentiment!
And btw, this is a prairie dog... I've owned dozens of them (they liked chocolate too).
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Becca- whether or not your port comes out is YOUR decision (unless it interferes with reconstruction) They are making RECOMMENDATIONS, and you think about it and then tell them what you want to do. No one is in charge of your care but you.
Most drs want to put you under again to take them out, so you might consider that as well.
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LauraJane, LOVE the paintings. You are able to paint what we are feeling, and I can identify with each one. LOVE them.
I felt the port removal was a symbolic moment, like going through a new door.
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Laurajane - just so happy for you. I seem to be stuck on the chemo merry-go-round. Love your paintings - my fav is the beach scene, the scarf is very subtle.
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LJ: I vote for number 2 or 4. They are all wonderful but those two I identify with.
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MBJ - I have read through your posts and I am awed at how you manage your health. You have such an amazing handle on healthy eating and supplements and taking good care of yourself. i am stage IV now and you would think that would give me the big kick in the ass to eat more veg or juice or something. I actually bought a juicer and have used it twice. I have purchased more supplements than i actually take, and basically just struggle at trying to take better care of myself. I have the 'excuse' of getting sick a few times and being stuck on the sofa too much, but still, I wish I could have just one tenth of your knowledge and abilty to do this.
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Laurajane:
Your painting are beautiful. I felt them so deeply they brought tears to my eyes. What a talent you have.
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Laura..your paintings are awesome..I keep staring at them...you keep soo busy..I don't know how you do it..with your traveling, your job and your painting...and well..you know the stupid cancer part...
Linda..love your new pic..I've got to get another one posted..my pic is 14 months old! Now I'm fatter and have more hair!
Jenn..agree about all the doctors/chemo/rads..etc..then just onc appts...but you will get used to it....at first it is weird....You still get to see them every 3 months right? So..they are not letting you go...believe me...
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Oh..about the sex thing...I don't think I had sex during treatments..if i did I don't remember it all..I know they gave us a booklet on sex and breast cancer...funny stuff..like I was going to read THAT!..My DH wanted me to read it but I just pitched it...
Actually between you and me...our love life isn't too bad...I consider it a celebration...
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Titan:
Thanks - my kind grand-daughter finally got around to taking a pic of me after my asking her since I was diagnosed two years ago! I only pay for the web cam, the cameras, the phones with all the bells and whistles, etc.
As to the sex thing, since my chemo and the all the crap it brought with it, I have never thought of it again and don't miss it at all. Of course, also being a widow helps in not thinking about it, lol!
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Linda: I like to share things I have learned with everyone, but lord I am human and no angel! I try to remember to take my supplements, I try to eat organic when I can, I try to stay away from stuff I shouldn't have, but it isn't easy. Having chemo brain doesn't help. There are things that I have learned that are useful and helpful in the battle against cancer, but the truth is, I was pretty heallthy prior to BC and I still got cancer! You do the best you can with the tools you are given but the world would have to change quite a bit for there not to be any cancer in it. There are chemicals in the air, the water, the soil, our foods, everything and we cannot stop eating, breathing or drinking water. We can only make our way the best we can. I know women who have eaten healthier than myself, women who never drank or smoke, women who have always exercised and took care of themselves and still got BC. It's a crap shoot!
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Laurajane: Oh, please don't make me choose because I love every one of them! They each struck such a deep chord in myself and they are so beautiful. Pregenelone, btw, is over the counter. Not sure if I spelled it right but I didn't make it to the store or the bank today, but it's supposed to be our libido in a pill.
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dlcw: My tumors didn't progressively get any smaller after 4 x TC even though I did two more. It seems after surgery that what was left was dead cancer cells. I hope the same goes for yours!
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My vitamin D levels are down again. My onc didn't test me until I asked him to early in chemo (thanks, ladies, for that tip!) It was <20. Even though I knew by then the D2 is pretty ineffective, he put me through several cycles of those 50,000 iu doses of D2 for 5-8 weeks, while also starting me on Os-cal, which is 400 iu's/day of D3. That got me up to 20, so I started taking 5,000 iu's/week of D3 on my own.
That popped my level up to the 60s, whereupon my onc freaked and said that was too high. He's apparently in the group that thinks your levels should be 30-50, not the 60-100 group. Well, my level just came back 12. And now he wants me to take 50,000 iu's/week of the D2. Arggh! The D2 doesn't seem to do anything for me. Would 5,000 iu's/week of the D3 be a reasonable substitute? I've done it his way for almost a year, and he still hasn't stabilized my levels, so I think I'm going to take the reins here. I will still get levels drawn every 3 months.
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Laurajane I love your paintings you are very talented, my fav. is the one on the beach... kinda been there.
Chocolate or no heaven....wait.... chocolate is heaven
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Riley702, I take 5,000 IUs of D3 daily. At last testing, it had brought my D level into the 30's. My Doc also gave me the prescription 50,000 D2, and said that our bodies make D3 out of the D2, but I don't take it. I do take the D3 daily. It is good that he is testing you every 3 months.0
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Laurajane- Beautiful paintings! My favorites are #1 and #2. I see myself in #1 at the beach last september, thinking, eyes closed, about what would be waiting for me when I got back, as I was about to start chemo........... did alot of thinking and crying during that week in Daytona.........
Thanks everyone for your personnal experiences with surgery comments. It really helped me. I try to do my arm exercises more this week and I hope it will help. But it still is very uncomfortable.....
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