Calling all TNs
Comments
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Arlene, you look gorgeous! I love the colour, mine was similar when it started to grow in but has sadly turned an ash colour.
Sylvia thank you, I am off the steroids, it was the ones I got for chemo. I'm trying really hard to loose the weight and am tracking everything that I eat and keeping carbs down.
I'm starting to feel much better and am not so exhausted. I get my blood work done next week so I'll see how my levels are.
Terrified, your at a very difficult stage right now, once you get your mothers treatment plan in place you and your mother will feel empowered and not so vulnerable. We all go through this and it truly is the hardest. This is a great place to come for support and information or to just vent- we truly unde
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Arlene I love your hair. It's coming in beautifully!!!
Shari I know you'll get those stubborn steroid pounds off. You are very motivated & a fighter. Looking forward to that praise report.
Terrified I'm so sorry to hear about your mothers diagnosis. It seems like when we first hear the word triple negative that fear grips us & the world seems to be spinning out of control. But once we get into the plan, find our peace and start marching on shaking the dust off and getting up again it doesn't seem to be such a doom and gloom cloud. I will be praying for your mother and for you. Please let us know how to support you.
Stupid boob you are in my thoughts and prayers.
Cocker spring time in New Zealand how lovely. 😊
Have a blessed week ladies.
G
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TDaughter, sending love and prayers to your family! We'll all be here to help you both through this.
Arlene, you look gorgeous!! I love the hair so so much! I'm hoping I can ditch the wig in a month or so, it's just getting hot and annoying.
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Arlene, of course it feels good because you look amazing! Mine was similar but wavy and now curly. You look great! And you know...you can really see your nice blue eyes now. I'm sure you are getting compliments from strangers even. Very edgy. I kept the white color as you can see in my avatar. Now it's a little darker though in the back and top. This is from my first trim at 6 mo PFC. Btw-the car is a great place to take pictures for some reason, lol!
Daughter, glad we can support you and your mom. Stick with this group. They will help and guide you.
Cocker, as always thank you for your words of wisdom. I can sometimes just imagine the Aussie accent coming from your words.
Aggie, hope you are doing well. Claritin helped me somewhat but still got the achy painful back and legs but it's justtemporary
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Lisa your hair looks amazing as well. I love the curls. 😊
Question for everyone: I know a lot of us experienced leg pain from the Taxol's. Does anyone get upper thigh pain still? My last Taxol was November and every few days my upper legs just ache & ache. 😕
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Arlene, you are GORGEOUS!! Your eyes are stunning, and I hope my hair grows back in as beautifully as yours. Wow!!
TerrifiedDaughter--Oh, man, do I wish you didn't need to be here. I'm so sorry for the horrible news. But you found exactly the place you need to be, I assure you. You will find the information as well as the support and encouragement you need here. And I have to say... your mom really knocked it out of the park as far as raising a young woman.
Now, you need to hear something very important: there is every reason to be hopeful! Everyone is right in that triple negative is very responsive to chemotherapy. And Cocker is the perfect example of someone in your mom's stage who is doing beautifully. Please don't despair. You are both doing everything right and soon there will be a plan. Having just gone through that part myself, I can totally agree with the other ladies who say that the part between the diagnosis and the "all right, we have a battle plan" is absolutely the worst. It won't always feel this horrific. And we will be with you every step.
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Lisa, I'm loving those curls!!
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aggiemegs, I had my second shot of Neulasta about 9 days ago. I had the usual "kicked by a horse" upper body experience that I did first time around by about day 5... and then a week after the shot I had such severe hip, upper leg, and lower back pain that my husband nearly had to carry me back to bed. OW. I'm sorry you're in pain. My MO's nurse had me on Benadryl for this, but I went out and got Claritin like everyone else to see if it helps. My next shot is on Friday, so I'll let you know if there's a difference.
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Awww, thanks, my friends!
It's funny how our hair comes back and changes everything. And in all different styles and colors. (Ok, so maybe I've been gray for a long time! Lol) Mine is wavy in the back--Lisa- Love the curls! and your avatar pic is Great! I don't mind the white, just hope my eyebrows stay brown. I am finally done drawing them on. Woohoo.
Steflove, I hear you! This NY summer has been never-ending and my head just couldn't take the wig anymore. I started with a baseball cap for a few weeks, to get my nerve up ;
Shari, so glad you're feeling better. I, too am still battling an extra 12 lbs. We'll get it off!
Carolina and aggie, I took regular Claritin for 4 days, starting night before Neulasta, and motrin 600mg, when my hips and legs began with the achey pain. By my last infusion, no aches from Neulasta, and no probs at all with wbcs.
SA8, I have some neuropathy in my feet and restless legs, and thigh achiness, most nights, since finishing TC at the end of May. It has definitely been lessening with time and rolling a frozen water bottle under my feet helps. Could you try ice or heat? Is it bone or muscle? Not fair when the SEs linger so long!
Hugs, everyone!
Arlene
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Arlene, you and Lisa look gorgeous
Steflove, I dont know if it will help, but I did buzz off the first fuzzies that came in so uneven and patchy....then everything looked thicker and fuller and even as it grew back in. I sacrificed the "length" of those first wispies and I was glad I did. But most people here know I did love being bald....and I loved it at the stage of Arlene's right now...just look how adorable she is! I would never had the nerve to get a pixie that short pre-BC, but loved it. Hope you do too!
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Well, I'm having my own wee pity party because my hair doesn't look fabulous like Arlene's. It's not fair you know. I always said I didn't want to be salt and pepper and what am I, salt and pepper. Seriously you look absolutely fabulous and well on your way to being another Jamie Lee Curtis and with all that exercise you will be as svelt as ever. I must try exercising some time.
LIsa another lady looking so good and curly. My own hair was auburn and wavy in so much as I could do anything with it, now its straight as and I really hate it. As for the Aussie dialect, I had to laugh the Aussie's don't sound anything like the Kiwi's Lisa. We have a totally different voice sound to them. There's always been a bit of a bone of contention between the Aussie's and the Kiwi's because they think they are better than us. If ever somebody cracks a joke about them someone will always go "yep typical Aussie". Having said that I love their country and have been several times. I just don't like their natives, like snakes, tarantulars, animal ticks that can kill your animal if you are unaware of them having them, cockroaches, alligators and venomous red back spiders that nest underneath toilet seats!!!! . So I could never live there.
Shari so glad you are getting some of your energy back. Just take it one day at a time and sit in that lovely garden of yours. The old feller and me have been out weeding today. I'm waiting for my cherry trees to blossom, which will be any day now.
TerrifiedDaughter hang in there girl. There certainly is light at the end of the tunnel and your mum will make it. (((Hugs))).
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CarolinaAmy,
Wow! Thank you for such wonderful words. Yes we both have come to realize this is the toughest part of the journey, but we know how difficult it will be. My mom was reading some stuff about chemo therapy and I really think she got scared from that. She is on this website now and doing some research but I told her not to overwhelm herself with information. It is all useful but every case is different. Ladies I love all your hair! It is natural beauty and I love how you ladies own it.
Thank you all for the support! It sounds like many of you ladies are recovering from a long journey and I am so glad God helped you through all of it! I keep reminding my mom that she has a long road ahead but we are here every step of the way, no matter how long it takes.
PET scan in the moring so off to bed. I will be back with update.
God bless and hugs to all!
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Hey Arlene its bone. A real deep pain that rubbing ice, heat etc doesn't help. They kept lowering my Taxol 20% each time because the neuropathy was so bad. I did wear the gloves and booties during treatment too. It seems to be cyclical. I have also lossed my eye lashes 3 times. I'm thankful for the results of killing the tumor though.
Thanks for your input.
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I just found this thread. I am 27, TN. I've been prescribed ac:t. Glad to hear from everyone here.
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27heart--so glad you have found us! I'm sorry that you had to, but you are in good hands.
TerrifiedDaughter, please keep us posted with your mom's PET scan today. I'm praying for her this morning that all will be clear.
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Weird poll question: for those of you who went through AC, what did your MO tell you to take for pain? Mine gives 400mg ibuprofen, but I've seen others in my chemo cadre who are saying that they are specifically NOT to take ibuprofen with AC. It's so confusing and now I'm curious what everyone else does.
My mom flew in last night as a surprise to spend some time with me. I'm glad that she came shortly before AC #3, since I'm feeling fairly good. But I'm also glad she'll see the cycle of the treatment, aftereffects, and recovery, since this will help her in getting my sister through it after next week. I'm putting together a care package for my sister of all the stuff I've learned (from here!) that is helpful in getting through chemo, and hopefully it'll save her time and energy in figuring it out and getting it for herself. And after what I've learned about radiation to the colon area for women, I'm going to shut up about my issues over potential radiation on the breast. Oh, dear God!!
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CarolinaAmy, my MO told me not to take anything. He didn't want me to "mask" any kind of fever. So, I snuck it... because, we have to do what we have to do... he did prescribe oxy... but that stuff knocks me out... I just needed the occasional ibuprofen to take the edge off... and I was always certain to check my temperature to make sure it wasn't going to "mask" a temperature...
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Hey, I'll take oxy! LOL I'm rather entertaining on that kind of thing, from what I understand.
But that makes quite a bit of sense regarding the possibility of masking a fever. Hmm.
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My doc said I could take Aleve, just not too often for pain and headaches. And at my infusion yesterday, I complained about a headache, I think I was hungry, and the nurses gave me Tylenol. Everyone seems to get different info from our docs.
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Hey CarolinaAmy! Other than getting NED eventually, not being alone for emotional support is the next best thing that can happen to me now.
I'm on taxol now, managed to get past 4 AC cycles. I was hurting from the drugs and the Booster jabs following the infusion. The pain was almost excruciating. But just remember that it'll go away.
I requested for a med called Arcoxia. I used to take it for my menstrual cramps. Just pop one a day and it works WONDERS to me. For those unfamiliar with this med I would suggest googling it and talking with your onch as I do understand that this is pretty strong stuff so it might not be too good for us? I don't want to give the wrong advices! My doc said it was fine though, so I've taken them and breezed past the ACs.
I hope those having AC now aren't having too much discomfort from constipation too. It was what crippled me the most, besides the nausea.
Take a hot Epsom bath and put on some aromatherapy if you can. Praying for everyone here.
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Good morning Ladies
I was supposed to get my first treatment today but yesterday when I went to the oncologists office for all my info, the Dr looked at my port and said I should wait till it heals more. It said it should be in 5 days before chemo.??? But the thing that really has me upset is that he said to me Did you decide which treatment you want to do Gezmar or Taxol??? He said they are both the same?? The nurse said if it were her she would take the Gezmar because it has less side effects. I AM SO CONFUSED! Who is the Dr here??
Anybody here taking Gezmar? Any info would be great. Thanks Rosieo
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Carolina, all I was told to take was plain old extra strength tylenol. It helped me enough!
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Good morning all! Mom is currently in the PET scan. She was given an adavan (or how you spell it) so she was pretty relaxed before she left my stepdad and I. I went to get a coffee and now am just catching up on all the posts!
Rosieo I see you just had a port put in. My mom will be doing that soon as well. That stinks that you have to wait. I know my mom wants to get going but we haven't even reached the first step.
For all you ladies, do you have any tips or advice for your chemo trips or how to prepare. As I had mentioned before my mom was reading some stuff and I think it really freaked her out. Plus today I read her Mayo paperwork and all the questions regarding "if I am unable to speak, etc" we're upsetting. But I need to remember that is worse case scenario.
Each day will bring new struggles but we will make it through. I'm patiently waiting by her phone for the call from Mayo. I will be back with more updates when I see her! Just any tips or heads up about what to expect or how to prepare for these next few steps would be greatly appreciated!
God bless you all
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TDaughter, happy thoughts for your mom today!
As for chemo, I know a ton of ladies will chime in but here's what I brought/did... from what I can remember. If I think of anything else I'll post again. All the paperwork is worst case scenario, please make sure your mom knows this! Before chemo I thought I was going to bed ridden in a wheel chair for 4 months and none of that happened luckily! I always brought a beach bag type bag filled with stuff to keep me busy/comfortable. (I just unpacked that bag for the last time and it was a great feeling!)
First, for her port. The first few days after surgery, I felt like the port was pulling/hurting whenever I moved my neck or arm a certain way. It started to worry me but everyone on the forums reassured me it will go away. Sure enough, almost a week later, I didn't feel a thing, and still don't whenever I move around. I now sleep on my stomach/port side and can't even tell it's there. For chemo days, the MO gave me a prescription for lidocaine cream to numb the area an hour before treatment. GOOP the stuff on like a LOT. Be very generous with it. Don't even rub it in, just plop it on and put a square piece of saran wrap or press 'n' seal wrap over it, and secure it with paper or medical tape (press n seal doesnt need the tape). It helped so much with the pain when they accessed the port, barely even a needle prick I felt. The one time I didn't put enough on or didnt wait long enough after applying the cream, woah I felt it! You can put it on up to 2 hours before port access the nurses told me but they say give it at least 40 mins to really work.
For stuff to bring during chemo, I definitely brought too much but I'd rather have it and not need it, ya know? Definitely bring things to occupy her/your time. Books, iPads, coloring books, etc. Also any snacks that she/you might want to much on. I will say though I don't recommend bringing her favorite snacks b/c I did that the first two treatments and now I have a horrible aversion to them, which makes me sad. I don't even want to look at Cheez-Its or banana chips ever again! haha! Warm socks if she wears flip flops or sandals to treatment so she can switch if she gets cold. I also brought one of those travel neck pillows that wraps around the back of your neck. My treatment center provided as many pillows as you like but that was just more comfortable for me. I also brought my own blanket but that might have been overkill bc I was definitely the ONLY one I saw with my own blanket!
It was the running joke with the nurses every time I would pull it out. I also brought a notebook so I can put all of my blood work results in there when they printed them out for me. I used the notebook the entire time during treatment, writing down everything from when I took meds and which meds I took (you'd be surprised how easily it is to forget if you took a certain vitamin/nausea pill or not!) and all side effects I had to remember to tell the docs. Also a big water bottle filled with non caffeinated liquid. I started out with water but again, got SO TIRED of drinking SO MUCH water so I switched to watered down juices, seltzer, etc. The treatment center also has drinks available but it was nice to bring my own too and mix it up with what they had. Her MO is going to recommend she drink a LOT of water, like 100oz or so. It's daunting but I definitely think it helped! Oh, and I also brought 'good luck charms' that my friends gave me and had them sitting out on the table during every treatment. Made me smile.
Hmm... I think that's about it. I know I'm forgetting something so I'll be back to add more!
When you know which chemo drugs she's getting I'll chime in with my info about them too but not everyone gets AC and Taxol and Carboplatin so I'll save that for anohter day. 0 -
Steflove...well done! I think you covered everything!
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Hi everybody here
I'm rather new to this thread. I have mainly posted on the other thread but I think I can find so nice friends here as well as the other thread.
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Arlene...your hair and the color are absolutely gorgeous!!! You are beautiful.
Shari...glad you are starting to feel much better. It took me about 2 years before I started to feel better, and that was just about a month ago. IDK, I guess after the revision I had that is when I started to perk up mentally.
Cocker...yup, WARRIORS and we are fierce
Meadow...Hi!!!
Stupid bood...still thinking about you and hope everything will go smooth for you.
Tdaughter...sending good thoughts and hugs to you and your mom.
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Hey ladies!
Mom made it through her PET scan fine! It was in a truck outside the hospital! I was gonna knock on the side but I figured that would be frowned up
We won't have any news about her results until Thursday. Her nurse called Mayo to see where they are at and she is still in the review process. So we are hoping to hear from them this upcoming week if not by this weekend.
My mom also cut off a lot of her hair so it's not such a shock when she loses it! I told her it is just hair, but I've been told that is one of the toughest parts.
Just thought Id keep everyone updated! Thanks for all the support and I wish you all a wonderful and blessed day/night/morning!
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hello,
While on Adriamycin (the A in AC chemo), you should not take many types of painkillers and other meds that affect your heart. This includes ibuprofen, aleve, flax oil, etc. I believe this is because Adriamycin is already so hard on your heart.
Take two Tylenol for pain. Never take more than the prescribed amount or mix with alcohol because it is very hard on your liver.
Try taking the Claritin an hour before your Neulasta shot. If you are still in pain after, you can continue the Claritin or switch to Tylenol.
All of this info came from both my MO and the nurses at the treatment center
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Welcome to all our newbies...27heart, Rosieo, Han Tagh, if I missed someone Iam sorry and welcome!
(((shorfi))) (((SA8)))
Cocker we learn so much about New Zealand by having you as our sister. I am afraid to say we did not hit that section of geography hard enough here in the midwest USA. If I ever make it there we are going to have a ball together.
I was told to take Tylenol for pain
Steflove thanks for sharing the info!
Hello to all you lovelies.
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We sure will meadow. We'll stay up all night, you can drink until your hearts content, we will belly laugh ourselves silly, swear if we want to about cancer, shop till we drop, sightsee until we drop and a whole lot of other things as well. Can you think of anything I have missed.
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