TRIPLE POSITIVE GROUP
Comments
-
Morning Camille...
Actually....you are one of the very few people here who never complains. Being able to complain and actually have people ..like you......who understand why we're complaining there to listen and cheer us on is one of the greatest blessings this forum offers us.
Waiting for news and for thingsto get moving during treatment was always the hardest part for me. I hear you. I never did figure out a way to make that easier though.
Do you know how much we love you?0 -
Hello to everyone!
Although I would much rather meet you all under different circumstances, its wonderful that you've all found your way here!
Iago,
I agree with you - Camille, you're one in a million, you keep me going! I know I'm going to laugh when I see you've posted.
Pbrain,
I like Ashlas suggestion too, but she has to choose! No way could I, I'd have to ask for a port for every name to be fitted and I'm pretty sure that's not an option 😉
Come on Ashla,
What's the decision?!
Nicky0 -
Good morning everyone,
Thanks for all of the suggestions. I will definitely ask about the Emend and Aloxi next time.
ArleneA thanks for the water tip. Wow 100 ounces! I try so hard to drink even half of that but I find it so difficult. I guess I'll have to try harder because I really think it helps.
Also, welcome to the other new people.0 -
Finished a/c thank god!!! Starting Aug 28 taxotere/herceptin!!! I hope this is gone for good! I'm so nausea and my stomach kills me...No appetite!! I hope next round is a little better! I can't do this nomore
0 -
Goutlaw,
Yay you've finished a/c! I really hope taxothere/ herceptin is easier for you. This is what I did, but weekly rather than every 3 and I'm not sure that the dose is the same, but I found it doable. I had no nausea and no problems with food. Used a mouth wash which helped with dryness/mouth ulcers. Biggest problem was flu like symptoms, but like as I say - doable!
Will be thinking of you.
Nicky0 -
Morning everyone!
MarisaC,
I got through chemo relatively easily compared to many but the one SE I had was the result of the steroids given for nausea. It was constipation and I had never experienced it before or after treatment. I would still do the antinausea meds because there is no reason to suffer when so much is available to help. The water .as Arlene suggested..will help things move along. Tell your MOs about any SEs. They have meds to help.0 -
Nicky J..
I am honored that you chose me to name your port. As you all would expect of me....I took the highbrow route for my highbrow friend's port. I went with websister 's suggestion. Her name is Portia....
And this is why I believe Portia is best. First..Nicky's daughter is a huge Shakespeare fan and this may please her. Second because this is one of Portia's most famous speeches from the Merchant of Venice.
"The quality of mercy is not strain'd.
It droppeth as the gentle rain from heaven
Upon the place beneath. It is twice blest:
It blesseth him that gives and him that takes."0 -
Hello to all the newbies - but sorry you find yourselves here - sure wish it didn't have to be! Those of us who have been around this particular block will do our best to help and encourage you.
marisac - I received Aloxi in my IV the day of chemo with instructions to start Zofran the same night. It did not work for me at all and it gave me a killer headache. I also had Compazine and Ativan to use, in that order, if the Zofran did not work. Compazine worked great for me, but I know a lot of ladies use Emend. If that does not work there is also a skin patch called Sancuso that is a last stop for those with intractable nausea. If you need to get Neulasta after chemo it is usually given 24 hours later. I had after each tx - my MO prescribes it routinely. Claritin worked very well for me, I forgot it one time and took it afterward but I could tell the difference. Take 1 regular 24 hour Claritin (not Claritin D) an hour prior to your injection. Continue taking it for 24 hour intervals for at least several days - some take it up to a week. I used the kind that dissolve on your tongue (Redi-tabs) because I was really tired of taking pills. Here is the study associated with this, but the antihistamine is thought to reduce the edema created, and ease the pain, when the bone marrow expands to produce more white blood cells.
http://clinicaltrials.gov/show/NCT01311336
LeeA - I had a baseline echo, then one every three months through Herceptin, then one when I was finished to check my rebound.
camillegal - good luck, we will be thinking of you and hoping all goes smoothly for you - you know we all love you, right?
0 -
Good morning, ladies,
Bonjour and welcome, LOutland Potvin. I am a Canuck, too, and Montreal is my favvvvvvvvvvvvvvvvvvvv city in Canada. Que de Cheval is such a spectacular restaurant, and shopping at Ogilvy's is such a treat.
Welcome, jen_randall. Hope you find lots of comfort, support, knowledge and strength from the ladies on this board.
FWIW, I was prescribed EMEND for nausea, had to take a pill the day before each chemo, and for two days afterward, along with a steroid pill. Never threw up a teaspoon!! I had to take Neulasta 24 hours after each of my 6 chemo sessions (three were FEC, three were Taxotere and Herceptin), and the bone pain kicked in about 3 days after each injection; however, I never got sick or hospitalized, so I guess the injections, although I grew to dread them, were worth it. I was prescribed Percocet for pain, took only a few, at night, when I wanted to sleep and escape pain/reality
.For those starting the Taxotere/Herceptin regimen, I iced my feet and hands (not pleasant, but I thought it would be better than losing my nailbeds) during each treatment (3, in total), and I did not lose any nails. Also, I had mouth sores as a SE of the Taxotere, but I rinsed often with baking soda and warm water (five times a day), so they only stuck around for about 3-5 days. Finally, it felt like I drank the Pacific Ocean during and after treatment
, but I do believe it really helped me to not experience too many debilitating SEs. I would mix a bit of juice with water to make it more palatable.0 -
gratitude - I'm glad you brought up icing since we have so many newbies! I also got mouth sores (at least a dozen) on the first tx - my MO prescribed a drug called Caphosol - worked like a champ, mouth sores gone in 48 hours. It is a swish and spit that comes in two separate ampules that you mix together right before you use it.
For any mild bone pain I had from either tx or Neulasta I found a very warm, but not too hot, bath did wonders.
0 -
Good morning everyone
Welcome to all the new people, this is the thread I keep coming back to also
MarisaC - sounds like lots of good advice re: nausea, I had a different chemo regimen and had to tweak things until we found what worked for me - I had Zofran and Emend one hour prior to chemo, Emend for two more days (once daily), Zofran again evening of chemo and twice daily for the next two days, Maxeran as needed ( and it was) and, starting with second chemo Gravol was during the night instead of Maxeran. I think the most important thing is to report symptoms and not try to tough it out
Goutlaw - congratulations on the end of A/C, the nausea part should be better for you with Taxotere/Herceptin. Other good advice has been given for side effects of those. I think one of the most annoying parts of the Taxotere/Herceptin for me was my nose running and eyes watering constantly
LeeAnn - I find it interesting the different viewpoints of MO's on echo/MUGA. I have had MUGA prior to chemo and every three months. At my last MO visit I saw a different MO as mine was on vacation, this person said that I wouldn't need any further MUGA's now that I was heading into the last four Herceptin's and had had no issues. From info read here I was skeptical but didn't press my point as it wasn't my regular MO. Two weeks after that appointment I received an appointment for another MUGA in October post final Herceptin so I am thinking my regular MO disagreed with the one I saw
NickyJ - I hope Portia lives up to her name and serves you well
0 -
Ashla good job--Nicky I was hoping Portia would be the winner--good reasoning to--remember when we had to memorize that speech-well I did--I'm old for some reason we had a lot of speeches to memorize but that was my favorite.
Marrisa I hate water, unless it's in a clean pool, but anyway I drank a vitamin water and once I got used to it I am now addicted and still drink loads of it-no calories, different flavors and it just goes down even when u'r not thirsty so try a few and see what u like and load up on them and drink all the time. Even bottles reg. water to me is awful so just in case that's my 2 cents--well nowadays 10 cents worth.
Thank u guys for being so nice to me--I mean I never really have anything interesting about what to do and I don't know a damn thing about cancer (still don't really) altho I read things they just don't register anymore--so as my rogue colon is pushing my liver over into my ribs hahaha even when I write that I laugh cuz it sounds so much like me-just all over the place (my mind anyway) and telling me to take it easy is like telling a turtle to go much slower but take my word for it I don't like this and the talk of cancer doesn't even bother me--only because I keep thinking of liver, onions and bacon--which I used to like, not so much anymore. So see how much I complain, so please don't think I don't complain. Cuz I'm the queen of it. This is a conversation between my sister and me--(she's stage IV) Me-I put an ice pack on my side to help the pain---sister---did the Dr. tell u to do that---Me, no_ my sister well maybe u shouldn'tit might freezeit---maybe if I put heat on it would it cook?--sister OMG don't put heat or ice on it ether way it's like preparing dinner. So this is my rock-my sister who I complain to all the time---we get no where but laughing. geeze she's no help. LOL
Goutlaw u'r almost there, it's a good feeling isn't it. And everyone starting before u know it u'll be in a room talking and laughing with everyone in there and the time will fly by--and it's u'r time to take care of u'rself/
0 -
Goutlaw, congrats with being half done! Hope the Taxotere/Herceptin is easier for you.
Camillegal, YOU ARE SO NEEDED HERE! I love your sense of humor. You have kept me going many times I ran into one of those freakin "scenic DETOURS" ! lol
Welcome to LO & Jen_. Hope you find the craziness overhere to be what you need!@ LOL
Im having another bought of the big D right now. sucks. Cant figure why. But I had to stop taking my antiinflammatory due to upcoming surgery and wonder if that just upset my body enough to start up my SE again. Unless, of course it was the fried goat balls.... LOL - I had fried cheese goat balls on a saladrecently. LOL - but it was probably the salad. but I crave them every once in a while. they just dont love me back. ....
0 -
Ashla,
I'm delighted to say that Portia and I are very grateful for all your help and we're looking forward to a long association!
Camille, I had to learn that speech - and most of the other speeches in the merchant of Venice off by heart too. Luckily I enjoyed it! Thanks for the images of you and your sister. Would love to be a fly in the wall when you two get together!!!
Well, my update today is - I'm typing this with one hand. Went a bit mad today in the garden, and when I moved some stones on the rockery; with my right hand cos my left hand has LE; I let one fall. It fell - on my left hand!! It's now 4 times its normal size and quite sore. I'm waiting til the morning to see if I need to go to the hospital cos I really don't want to sit in the ER for hours tonight. Will keep you all posted....
Nicky0 -
I just typed out a whole long thing and I think it got lost in cyber land, even though I saw it post. Does anyone else see something that I just typed about my crap crap crappity crap morning?
If not, here is a question I asked at the end which has nothing to do with the rest of the post. Did anyone NOT lose all of their hair on chemo, those who didn't do cold caps? I feel like I still have quite a bit of hair on my head {I never shaved it, just buzzed it to about 1/2 inch} and what is still there is GROWING! This has me worried that treatment isn't working like it should. I don't know. Maybe it's b/c I am doing the taxane before the A/C, but who the heck knows!
0 -
kayb - thanks for the info on NCCN guidelines. I've had my regular echocardiograms, but my MO said no more needed after I finish Herceptin (I have 2 more to go). So it's reassuring to see that he is following the guidelines. I've read somewhere (probably right here) that Herceptin problems can show up years after treatment ends, but I guess I can't expect to have echos for years to come unless I have symptoms.
TwinMamaHeather, in my group of women who started chemo in September 2012, there were two besides myself who did weekly taxol (either as their first or their only chemo). One of them lost her hair right away; the other one didn't lose it until right at the very end of her taxol treatments. (I did cold caps.) I don't think you need to worry about your treatment not working properly - they always stress the fact that not everyone gets every side effect, and lack thereof doesn't mean it's not working.
0 -
Heather, Sorry about your crappy morning. And I do not see your first post which was lost.
I did not lose all my hair during chemo and the few sparse hairs that remained did continue to grow, albeit slowly. I also never totally lost all my body hair either. I had at least 3 nodes that showed up on the PET and MRI pre chemo. After chemo, I had surgery and all the nodes were clear! As others have stated in the past, not losing all your hair is not an indicator as to whether the chemo is working or not.
Nicky, I am soooo sorry about your hand!
0 -
Thanks Bren!
As I told dh, I'm amazed its taken until now for something to happen - I'm 100% left handed so not being able to use it properly has resulted in plenty of broken plates and glasses, but this is the first time I've done myself any damage.
TMH (sorry but its shorter to type)
I buzzed my hair too, but found areas on my head that didn't fall out completely and 2 months into chemo I found it was starting to grow back over the rest of my head. Like you I was worried that it meant the chemo wasn't working, but in February I had a PET scan which showed NED, so don't worry, it's one of those things where we're all a bit different. Some lose it all, some grows back sooner. Just be thankful you're one if the ones that gets hair back sooner!
Nicky0 -
Websister,
I completely forgot about the SEs of tearing of the eyes and the runny nose. What a difference almost a year makes!! For me, the tearing was far worse after my final session. I would be going for a walk and I would be literally crying, so I wore sunglasses so people would not be able to see.
TwinMamaHeather, I did not go completely bald. I took clippers to my own head after Round #2 as I found clumps coming out terrifying and upsetting. By the end of it all, most of my head was still covered with some hair, but I had a few bald spots. My lashes and eyebrows disappeared completely about three weeks after my final chemo round (#6). I was so sad, angry and pissed off, 100%, thinking I had escaped the "no eyebrows/eyelashes, alien" look. Oh well, I now have both back, which is wonderful. The passage of time heals almost everything. Chemo curl on top of my head is funny looking, but my Mom said I looked "sweet" when I was home visiting her, dad, sisters, relatives, etc. Mothers, you gotta love them when they lie right through their teeth
----but I would do the same for my son or daughter (I have two boys, by the way).NickyJ, timeline wise, we are on a very similar schedule. How are you finding taking Tamoxifen? I am 50 now, hot flashes are the main SE for me.
0 -
I have found yoga to be a source of enormous physical and psychological well being .I started with the sole goal of improving my mobility and balance that were severely out of kilter post treatment. I felt like I was 90 years old . But yoga has brought me so much more. For those of you who are consideering it this article tells the story just perfectly. http://well.blogs.nytimes.com/2013/08/08/living-with-cancer-patient-yoga/?partner=rss&emc=rss&_r=0
0 -
Gratitude,
I've had no problems at all with tamoxifen - other that hot flashes. I've found this summer very difficult because of them. I feel hot in general all the time and when I get a hot flash it becomes unbearable. I started out taking paper towels with me when I went out; I've since progressed to carrying a cotton towel everywhere with me. It's not pleasant, but if it keeps me NED I'll persevere!
Nicky0 -
Aw Moon...sorry about the big D issues again. For the newbies...Moonflwr has taken the scenic route and gone around a few times on this trip. She's also our resident poetess.
Nicky..
Don't know if you were in the forum at the time but we recently discussed that a lot of us seem to be accident prone post treatment.
Re Muga echo...
I thought for sure after all the news that herceptin heart issues can be assymptomatic and appear many years post treatment that my mo would want me to be tested at least yearly but he
told me since my EF was 61 , it wasn't necessary. I'm not certain I'm comfortable with that either.
Twinmama,
What happened this morning?
Nicky J
May you wear Portia in good health!
I'm going to discuss it with my PCP.0 -
What is there a full moon or something? Everyone having a bad day.....
0 -
Ashla, I hade my 9th out of 12 abraxane/ herceptin treatments this morning. My husband always meets me at treatment and grandparents keep the boys {usually over Thursday night}. This morning he texted me asking me if I wanted oatmeal, I hadn't texted back so he called. I thought he was calling about the oatmeal, but no, my mom had tripped over one of the boys and their dog while helping the other boy and she broke her arm {humerus}. So he had to go get the boys so that my dad could take her to the ER. So, I was worried about my mom, worried about the boys b/c they were freaded out, and I was sad that my husband was going to miss treatment and it would be the first time I was alone in there. Then, the nurse came in and told me that it looked like my ANC was low so they were doing a manual count. That pretty much broke me, I was terrified of missing a treatment. My ANC ended up fine, I got my treatment and all is well there, but it was still a stressful morning which has put me in kind of an anxiety filled funk. Sometimes it's really hard for me to be going through neo chemo because I always fear what will happen at surgery. However, I also know that the women I know who do surgery first have the fear that their chemo cocktail isn't the right one b/c there is no gauge for it. It's one of those darned if you do, darned if you don't things I think. :~)
Also, thanks girls for the response to my hair question/ concern. Gratitude, I am like you, I buzzed and basically still have a small amount of hair all over my head, and don't even get me STARTED on the fact that it looks like I will have to shave my legs soon! haha!0 -
I love that Portia was chosen as the name for Nicky's port! I am actually a high school English teacher and a big Shakespeare fan.
Hope you feel better Nicky.
Thanks again for suggestions, especially
SpecialK for the Claritin instructions and
Cami for the Vitamin Water idea. I used to drink it all the time but haven't in a while.
Heather- hope tomorrow is a better day for you.
Have a good night all!0 -
I just lost a whole post filled with so much info. (yea right)
TwinmamaHeather I can not believe u'r poor mom broke her arm--OMG what a day for everyone in u'r family--Scared the kids--u'r alone, U'r mom's in ER with u'r Dad and U DH was probably a mess. What a day u had--I hope u can relax somehow tonight--Is u'r mom in a lot of pain? Do u take any med for anxiety cuz if u do this is a good time to take one. I'm really sorry about this day for u. BTW I had chemo before surgery every week for 4 months and I think it also makes it easier for the Dr. removing breasts??? But it does show themwhat's working on u and I think that is a plus. Just my opinion.
Moon This I am an authority on totally the big D.. I've had it for 5 yrs--OK I assume u take a script for it if not get one--how often do u have it. Do u notice if it's what u eat? Any time of the day? Buy stock in Depends and use them it just gives u more confidence when u'r at home--- It can be brutal andexhaust u too. Oh I have no answer to stop it tho, I mean I had every test there was and no answer--I'm just trying to help u'r situation Drink electrolyte waters and eat a lot of potasium based things if u'r not already taking the pot scrip and magnesium script that screws up too. Now how long have u had it? I'll help u anyway I can wit what to do or at least what they told me, it didn't work for me but it might work for you.
0 -
Twinmama..
Yikes ...that is a bad day....that's a whole lotta tissues kinda day. Hope tomorrow is better....0 -
Lago, I went into the calculator on Chipotle. A chicken burrito with brown rice, fajita veggies, black beans, and salsa is 800 calories. It’s also 51 g of protein, and they are so huge that I turn them into two meals. So that’s 400 calories. Not so bad.
Cami, I’m not sure what news you’re awaiting but I hope it is good news and arrives promptly! Or at least before the weekend. (hugs)
Twinmama, I know someone who had Adriamycin and she said that the only SEs she really had were hair loss and food tasted like nothing for awhile. She worked during the whole thing. You might enjoy this blog – she is also her2+ http://killerboobies.wordpress.com/
Thanks for the info LeeA
Wow sometimes this thread slows down a bit and sometimes it is super active! I just skimmed a bunch of comments … two updates on my end. One, (good news), my CATFU knee apparently isn’t CATFU after all, it’s just arthritis. So nothing I do is going to injure it more, it just … is. Bad news, a good friend of mine was just diagnosed with bc. It sounds like it’s really early but she didn’t ask too many questions. I’m going to go with her to her doctor’s appointment on Monday and probably annoy the doctor but oh well. Does this make any sense to anyone? She had calcifications and it turns out that some of those are malignant, they look like little clusters of salt granules or something? I’m not sure what to make of that but it does sound like whatever it is, it’s very early stage.
0 -
Cypher - I guess you could consider that good news about your knee
I think what your friend was probably told was that there were clusters of microcalcifications seen on the mammogram - this is usually how DCIS appears, if she was told some are malignant the doctor may mean that there is also some IDC? That's my best guess anyway
I have a friend who saw her surgeon yesterday post lumpectomy and axillary node dissection. She got a good news/bad news report also - clean margins but 8 out of 21 nodes positive. She doesn't know her receptor statuses but will see the oncologist next week0 -
If this means anything when I finished my muga was at 70 and was there the whole time. about 2 yrs out I needed a heart thing--don't ask me what cuz don't know well it show some abnormality and I take some med for it. I asked The card could it be from H and he said maybe but he doesn't know for sure--not enough studies. who knows.
Cypher for all the studies that are going around I have never seen so much cancer going around for so many ages.
0
