TRIPLE POSITIVE GROUP
Comments
-
Omaz, Thanks for asking I actually start the tamox pill today I will let you all know if I have any problems with it soon.
0 -
Ang - I found that taking it with food was good for me.0
-
MsTori, I had TCH. I lost my hair on the day afteryy second tx. So everyone is different. I always cut my hair short, but it was still hard. I took a pic of one days hair coming out and it looks like a hairpiece on a table. I wasn't able to buzz it right away as I ended up in the hospital and the hair just kept coming out. My scalp actually hurt until I got it buzzed off. I went to a wig place and they helped me pick out a wig that looked like my own hair but better, they said this is easier to do when you still have hair. Then thevone they picked was just a shade or two lighter than my natural hair cause chemo makes you paler. Then they told me to come in when my hair starting falling and they would buzz it for free and fit my wig. They did that, and took over an hour making the wig look and feel right. They even thinned it out so it didn't look fake, it looked like me.
The hardest part of the chemo was waiting for it to start. I had an infection, so my chemo was delayed for over a month due to being on antibiotics.
I never iced, bit I had an idea,subway someone who iced could tell me of it makes sense? I though if you got the big potholder mitts and put bags of ice in them it would make it easier? Just a thought.
I think you all will get a kick of this little story. Warning its a bit gross! LOL
I was giving myself abx yesterday. I was going about it like I usually do, doing fine. Somehow I didn't notice that I had unscrewed the catheter tip when I took off the saline flush syringe. I let the line dangle down when I reached for the heparin lock and had a bit of trouble getting the cap off, so I reach for the tubing, and feel wet, thinking its saline solution I just shake it off and am startled to see blood flying, on my hands, rolling down my shirt, etc. I actually just sit and stare at it thinking what the hell did I do? Before it dawns on me that blood is pouring out of my port tubing. It takes another couple of seconds before I get myself together and figure out I have to clamp the Damn tube. LOL. Now, I look like a horror show, my tubing and clothes are all covered in blood. So I clean it all up, realize I don't HAVE another cath tip. So out comes the alcohol and I clean it up put it back on the line, and start to flush with more saline. Used about six syringes to get all the blood out of the tube, tip and elsewhere, used about ten alcohol wipes for where the blood came out by the connections and finally got the heparin in. I was so freaked, and, yes, I remember to clamp the lock down now when I am changing syringes. How come they don't mention what to do when they teach you how to give yourself abx? LOL, man I was so freaked. I should have taken pics. I could have been in costume for Halloween! LOL its funny - NOW!
Well much love to all.0 -
Tori....
I had TCH and I and everyone else I know who had TCHw ithout old caps lost their hair. I was told my the NP it would start falling out 21 days after 1 st chemo but it took a bit longer for me. I also lost the last of it in the last 3 weeks PFC..I cut my hair really short 3 weeks post DX and bought my wig right after that.
The good news is that 11 mos later I've got barely 2 inches of hair...much less than most others.....but everyone thinks I should keep my hair short because it 's becoming. Who knew? IT's my " lemonade " hairstyle.
My power port was inserted last Halloween and I had no issues or pain whatsover with it other than the fact only infusion staff are willing to access it. It has been great. It was used a few das
Aer with no problem. The few times I needed veins or IV...lumpctomy......they blew my veins becAUse I was dehydrated.
That's the trouble with the VA..the care is male dominated and infusion staff will not be as familiar with BC issues. The medical protocol will be the same. That being said ..I've had to dig for answers every step of he way with my MDS as well.that's how I came to the forum.
I think most of us got more info here ...and accurate info..than from all the other sources. Of course you must double check with your doctors.0 -
I just wanted to add that in my experience, it is perfectly possible to have chemo and the full year of Herceptin without a port. Here in the UK ports are not even offered. The rare occasions when IV becomes problematic, then a Hickman line is the proceedure of choice.
Its a myth that this kind (and length) of tx can only be achieved with a port. The chemo nurses at my clinic were all very experienced with inserting cannulas, even with older ladies whose veins were less visible. A heated kind of bandage was always applied to my arm for half an hour before tx. This made the whole process much easier.
Of course its personal choice but it always amazes me that ports are never done here.
0 -
Jack,
I am wrestling a giant lego saber out of an even giant-er (ha) lego Darth Vader's hands...from Legoland in Southern Cali.
I really need to update my photos.
I went to a chocolate festival today. Ugh. Pizza, deep dish for supper, after hogging down some serious chocolate treats all day........looks like I'll be fasting tomorrow!
0 -
Thank you all! So much to absorb. I'm copy and pasting your posts into my notes for reference. Lol!
Lago- yayyyy! I can eat sushi! I will be getting Nuelastra shots, 24 hrs after my chemo. They said my mom can give them to me, so they will send it home with me.
SpecialK- I'm Officially adopting you into my family! I will let you know, but I don't want you to have to make the drive. I will watch them like a hawk! My mom will be there as well, and she is pretty vocal too! Lol! I am in Tampa on the 16th of October. So I hope to see you then. :-)
Moon- oven mitt is a great idea! Hadn't thought if it, but seems like it will keep it from going everywhere. Also- I was a dialysis nurse, and can completely imagine blood going everywhere! First thing they taught us! Clamp, open, flush, clamp. My first few months I went around saying it out loud, clamp clamp clamp! My patients prob thought I was nuts!
Lol!
Sol- I just spoke to a lady I went to RN school with. Found out she's an oncology nurse in the hospital in Daytona! She is sending me info and also nutrition info. I hope I have minimal SE. I've been eating pretty good and drinking lots of water. My biggest thing is nausea.
Ashla- I'm actually glad to have the power port. I want to save my arm veins. Even more so since I have lymphadema precautions on other arm. Hope it doesn't stick out to horribly bad. Sounds silly, but I'm a bridesmaid next May, and it's a strapless dress. Lol!
TonLee- love the new pic! You look great!
When I see the first big clump of hair come out, I will go in and get it shaved. I think I'm just going to go with cotton wraps. They look pretty comfy. I'm still going in Oct 3rd to get a color and cut. I will just have her cut off more than I intended.
As for the VA chemo room.....they better get ready! I am going to female-ize it! Some pretty pastels and new pictures on the walls. Haha! I plan to pave the way for any other female veterans that have to walk the path I have.
Thank you again ladies. I am nervous. But I am so grateful for each and every one of you, and your support.0 -
mstori - I have no problem with the drive - I have friends in Gainesville that I can visit too, it is an easy drive straight up I-75 - I am not kidding about being there - I would totally do it! I don't have a job - I need something to do!!! The only thing you would have to prepare for is that I might be bossy with the VA staff, lol! We can discuss on the 16th!
0 -
SpecialK- sounds great! My mom could probably need a break or some company. They don't allow anyone to stay in chemo room with me though. But they said that my mom or a friend can come in and switch out my ice packs or check on me. I'm afraid if they give me benedryl, that I will be knocked out and not be able to ice right. Talk to you more on the 16 th. I can't thank you enough. :-)
0 -
Yay - happy to help!
0 -
soltantio and MsTori. I never paid much attention to my port. Yes it sticks out even though I got a kiddie port (juvenile) because I'm so small and thin on top. For the past 2 summers I just let it stick out. Only when I was on an interview did I hide it. I know some other women that hid it with scarves. See photo below.
0 -
Hi everyone, just checking in. Vomiting stopped! But, I still feel yucky:( I think I am near the end of the nausea. thank you all again for all of the support.
As for the port discussion...I got mine on a fri and started chemo on Monday. It took me awhile to get used to it...but, now I am so glad that I have it.
Lago- I do get a nuestula shot after each chemo treatment. They are rough but worth it. I did not know that I could eat sushi!!! Even though I usually go for the cooked stuff anyway (I am a wimp) but, I was scared that the raw stuff and the cooked were prepared on the same cutting boards so I steered clear of all if them. I am ready for a sushi date night now!
Soyapepper-thank you:)0 -
Thanks Kay. I can't imagine not having you all around. This is my second family. I will make sure to keep up my nutrition and protein. Hard to eat a lot now since my tram. So I have been eating 5-6 small meals a day if I can.
Had a scary moment today. Before going shopping today, I saw my neighbor, so went over to chat for a second and completely forgot I had no sunblock on. A second turned into 10 minutes. Thank goodness no burn on my precaution arm. Lesson learned. Sunblock now each time I leave the house! Still hot here in Florida.
Going to hit the sack. Good night all.0 -
Thanks Kay. I can't imagine not having you all around. This is my second family. I will make sure to keep up my nutrition and protein. Hard to eat a lot now since my tram. So I have been eating 5-6 small meals a day if I can.
Had a scary moment today. Before going shopping today, I saw my neighbor, so went over to chat for a second and completely forgot I had no sunblock on. A second turned into 10 minutes. Thank goodness no burn on my precaution arm. Lesson learned. Sunblock now each time I leave the house! Still hot here in Florida.
Going to hit the sack. Good night all.0 -
Jennifer when I was told about the nuelasta by my NP she said I had no restrictions. I specifically asked "what about sushi" and she said my onc said what ever you want. I would still check with your onc but I did eat it. My white counts were normal during chemo… it was only after chemo, no nuelasta that I got shingles (2 months later) and several colds.0
-
Omg So much going on to cath up one. Congrats Melster u'r officially done with herceptin---good for u, it what everyone waits for then after it's strange cuz u'r not seeing all these people all the time--It's odd I think.
And for u ladies that are getting nauseated, I'm so sorry that is such an awful feeling please try to drink vitamin water as much as possible even u u use a straw and sip all the time it helpsI always had warm gingerle (still do) in te house for some reason that helped me, not everyone but sometimes. And if u have the flu or bug it's really bad and exhausting on u'r body.
And the first time I heard deported on the boards I of course thought they were leaving the country I'm still with my port, but it's used alot so I'm holding on to it.
My cousins wife was in the VA Hospital -being there 5 days a week and was so kind to the paitients and makeing sure the stafff kept up with their needs and she'd make food for them too. I have to say she was bossy and tough sometimes on the staff becuade she really cared aout the patients. Well after a few weeks she got called into some office and they told her there were a lot of compkaints about her and her attitude with the staff and they gave her a write up for her actions. And she told them u can't write me up--I don't even work here.--Her son was there but she was talking for everyone and the staff thought she was their boss. Weel I thought that was comical.
And now that it is getting cooler if u need to cover u'r head there are such pretty scarfs and hats and earring for color and they are so instyle, u'll feel better about it going out in style.
I am so sorry for all that have started this ordeal, but this is a good place to be for support and info. So u're all in good hands.
0 -
MsTori - I second the extra protein. I met with an oncology nutritionist and that was a recommendation. I put the peas in insulatd lunch sacks from Target. And, I had the neulasta shot in my belly next to the belly button. Don't forget the claritin for several days starting the day of the shot.0
-
Jackboo I never had a port either. I was given the choice way back when I was diagnosed in 1997. I knew that if the veins didn't work, I'd have to get a port. I had 9 months of ATC and really no problems. After my bone mets in 2001, I have had herceptin on and off, along with zometa and now perjeta and never had a port. My viens are holding out okay. The trick for me is to drink at least 6 glasses of water in the few hours before and always eat something salty. The nurse then warms my hands and arm prior to injecting me.
0 -
I had my neulasta shot in my arm I hated it but knew it is what I needed and was in the end helping me.
0 -
I always got my nuelasta shot in my belly never bothered me there, but after the first time, I took Claritan.
0 -
Am I the only one who didn't get Neulasta? If not for you girls, I wouldn't even know about it. Except or the basic literature on lowered resistance in my chemo instructions, my mds never made an issue of restricting any particular foods even without neulasta. Good nutrition and hydration and as normal a life a possible were encouraged.
0 -
Ashla I don't know if I got it--I remember getting shot thruout my chemo, but I don't know what it was. or what it was for.
0 -
Ashla, I never got Neulasta either, I remember asking MO about it after I read that so many of the ladies on this board did get it. My MO said I did not need it so that was that. I did do very well with chemo without it.
0 -
Eileen..that's the exact reaction I got when I finally asked near the end of my treatments!
0 -
Some MO wait till you need nuelasta to give it. It's a very expensive shot. Some insurances won't approve it until there is a problem with your white counts. I have a feeling if I didn't get I would have eventually needed it.
BTW I hate this cloud system. Everything is so much slower now on the forum.
0 -
Do you guys have any advice for me about my knees? I never had any trouble with them but since chemopause and tamoxifen they hurt on the inside of the knee. It's better when I exercise daily but they still hurt. Any suggestions??0
-
Omaz, you might want to try a stabilizer, like I used way back when. It helped, bit my knees are just bone on bone now and nothing helps, but the stabilizer did at first. You might just need it for awhile til it feels better. Kind of like tennis elbow! LOL
0 -
Thanks all for the advice.
Lago- thanks for posting picture of port. I wonder if they will offer me a junior one too? I'm rather thin up top, hippy down bottom. Lol! If not, it will look beautiful in my bridesmaid dress next May! Hmph!
Just realized this morning that I'm scheduled to start chemo on the 12th Oct, but they never scheduled me for Pre chemo echo. ??? Have to call Monday morning and find out why.
Also, I can't get the Nuelastra shot in my abdomen, because my tram surgery. I have to have it in my arm. Is it very painful? Also, I take Zyrtec, and have been on it since 2000. Only thing that works for my allergies. So since Zyrtec is in same class as Claritin, I can't take both. What does Claritin do by taking it after the shot?0 -
Thanks Kay! But what is it that you take the Claritin for in the case of Nuelastra? I have so much to learn.....lol!
Yes! This cloud thing is irritating.0 -
Okay.....what cloud thing?
0
