Starting Chemo September 2015; join us!
Comments
-
I'm posting that on FB every day this month! I'm 43 and I'm going to live dammit!
0 -
Good morning!
AC Infusion #2 complete. Feeling a little fuzzy this morning (probably the lack of caffeine). Getting about a dozen strands of hair coming out whenever I run my fingers through it. I'm sad to hear about all these people getting nauseated hours after chemo. Do they not hang a bag of anti-nausea medicine before the chemo drugs? That's how they fill the time waiting for the medications to mix at my location. I take an Ativan to help me sleep off the steroid high and not wake up nauseated. Dexamethasone for the next 3 days seems to do the trick.
Grey - how'd you manage 12 weeks? I got my port put in on 1 September (2 weeks after surgery) because I was due for another procedure a week later (and that's when I could get a ride). As soon as my oncology team heard it was in "early" they wanted to get me started right away - they begrudgingly let me hold off until 4 weeks post surgery.
0 -
Mom2boo: Excellent news!
Arista: Happy birthday! Next year will be far more celebratory, and I'm glad you're on the mend.
Grey: Being "outed" at church might be a very good thing indeed. I didn't want anyone to know, either, but had to go public because it wasn't fair to my husband and teenagers to make them keep the secret. Life got so much easier logistically after people knew. I hate, HATE asking people for help. Once people knew, they offered. That's a lot easier for me.
I started chemo five and a half weeks after surgery. It was going to be about four weeks, but I rescheduled an MO visit so I could go backpacking for three days. I would also have had no problem starting a week later so holidays would hit when I was feeling OK. I know there's an optimal window of 4-12 weeks after surgery, but I don't know why the cutoff is 12 weeks. I wonder how steeply the benefit of chemo declines after that?
My hair shows no signs of jumping ship on Day 10. I did notice this morning that I didn't need to shave my legs for the first time in 35 years, so something's up.
0 -
ladies, I have the cool comfort wig liners from www.tlcdirect.org. I had them all the time but never used them. Then I started getting really sweaty and itchy with my halos and baseball caps. So I put them on and boy what a difference
0 -
CarolinaAmy oh no with the big D. Hope it's not c-diff. Feel better.
The video is beautiful. I think that there should be screenings offered at age 40 regardless and at age 30 with family history. My mom was diagnosed at 69 dcis stage 0 non-invasive lumpectomy with rads 11 years ago. I went for my first mamo in 2004 at 33 that found something. I had 2 stereotactic biopsies done on my left breast for a benign tumor and calcifications back then. I fought my insurance co every year to get yearly screenings until I turned 40. And 11 years later triple neg in the same breast. My tumor was on my chest wall and could not be felt. It wouldn't have been found if not for a mamo.Back then not a push for genetic testing even though my grand mom also had a mastectomy at 69. And I tested neg for brca 1&2 back in May of this year. All my docs said I am the wrong age for cancer when diagnosed at 44. Any age to be diagnosed is wrong. I want to make sure I beat this crap and it doesn't come back.
0 -
I totally need to order some of those AG3... I just have no idea what my head size will be after the massive tresses are removed. I used to by 7 1/2 or 7 3/4" hats when I was in the army. Does that equate to large? Does the stretchy nylon mean I should go down a size? How do yours fit?
Unrelated: Big D - every time I hear that a country song starts going through my head. "Goin' through the Big D" by Mark Chesnutt.
0 -
I haven't posted for awhile just trying to accept that this is a long journey and I have to take it day by day. I am trying no to think about my treatments everyday but it seems like that's how it goes.
I am going to ask my oncologist about B vitamins. I did want to post that I had some neuropathy after my first Chemo. I started taking Glutamine in a drink and I haven't had any numbness in my feet or hands since. I am having a hard time taking it everyday I have to mix it in lemonade as that cuts the taste. I am supposed to take 30mg a day especially around when I have Chemo.
Also because of my Chemo delay I had one chemo in July and then started again right before September. I will finish up around thanksgiving and then make a plan to finish reconstruction.
CarolinaAmy: I loved the video I am so grateful women are speaking out and that families and friends are lobbying congress. It is hard to face this at any age.
I am forever grateful I went for my first mammogram at 42. Diagnosed with Double breast cancer and the PABL2 gene. I loved your part.
AnnieB43 I have a port and even though I had some complications getting it I am really grateful to have it. It makes my infusions much easier. I recomend that you wear a V neck shirt that you really like and tell the doctor to draw a line and make sure your port is to the side of that line so you can wear shirts you really like. My doctor was a moron with that. I should have done that. now my port shows when I wear my favorite shirts and ticks me off.
AG3 I need to look at wig liners how do you keep them from showing or riding off your wig? Right now my wig is great but it itches like crazy on my bare head. I only wear it when I am in crowds.
Is anyone else hotflashing at night? That is the little gift I have been given and so I am running my bedroom as cold as possible.
Also for those of you that are having nausea complain complain complain. My husband told the oncologist we weren't leaving until he had a better plan for my nausea. I get like to bags of something before they start the Chemo stuff in my IV and then after that I have two pills I alternate every 4 hours. I don't wait to be nauseous.Pain I can take Nausea I can't It turns me vicious. I think I am zofram and compazine. Before BC I didn't even take tylenol if I had a headache
also one nurse want to push the stuff right in my port line and I told her no way it was going in with the saline. Maybe that is how they do it at other places but I wasn't comfortable with that. My first nurse always put it in my saline line.
Also I have had so much anxiety,stress and insomnia from the delays in my Chemo that my doctor gave me a low dose of Ativan. I am truly grateful for it as I can sleep at night now.
Going for number 4 this next week.
How is everyones appetite? I really struggle to eat food I used to love and I know I am just not getting good nutrition just doing the best I can.
0 -
I lived in Southern Oregon when I was 40 (3 years ago). The group medical I was in had adopted the mammogram starts at age 50 thing. I'm not sure what would be happening to me now if I had stayed. I felt the lump myself and went in to have it checked. Right up until the day they called me and told me it was cancer every Healthcare person I came in contact with said it would be nothing and not to worry. Too young, no family history, no reason at all to have cancer.
0 -
tessu, tfoxy, &Ava feel better gals.
Lindy I agree about the underarms. Nice not to have shave bumps. They are so smooth shame it won't last.
0 -
CarolinaAmy, loved the video. Wish there had been more women in their 30s who participated. I signed. I shared on FB.
That pissed me off to no end. I see so many women on this forum who are exactly 35. I'm guessing that first mammogram was the worst experience of their life. And here I am thinking: Age 35 isn't soon enough for people like me (33) and Tshire (31). How the hell can they make everybody wait till 50? P.S. They did the same thing with the pap smear. Every other year now, so I hope nobody gets cervical cancer on top of all this.
And yeah, all along the way, people kept telling me it's probably nothing. I feel like the only way anybody took me seriously is when I told them half my family was dead from breast cancer and that my Dad had the gene. They still dragged their feet with scheduling the follow-up biopsy and sending the results back. "Oh it's just a cyst!" "Oh it's probably fibroidadinoma." or some such nonsense. By the time my great team of doctors was able to act - my lump was 4.5 cm (pick up an avocado pit, it's pretty close) and I was SO lucky - I mean act of God lucky - that there was no lymph node involvement. My cousin lost his entire testicle at age 25 because at his initial exam almost 8 months earlier when it was just a small lump, they said it was nothing. Darn thing was the size of a Lemon by the time he crawled into another office. If we pretend it doesn't exists and doesn't kill people, will that make it go away?
/endrant
0 -
My aunt and cousin (her daughter) had breast cancer so my OB/Gyn made me have my first mammogram at 35. I'm really grateful for that. I am 43 now and my cancer was found during a routine mammogram, since I was having them annually due to my family history. That said, I have an occult breast cancer...meaning they can't find any primary site, it was found in a single lymph node. All other tests were clear( 2 MRIs and a PET scan) except for that one lymph node. I'm very grateful that the mammogram also looks at your nodes because there was nothing else to find.
Also - my doctor told me that if you have dense breasts like me a mammogram won't see ANYTHING. Only an MRI. I told all my friends that if they have dense breasts they have to insist on an MRI. I can't believe that people aren't given them until after something bigger is found!
I wish more doctors were as aggressive as mine is. It just doesn't make any sense.
0 -
Oh edwsmom, I switched providers because I was so mad at how slow everything was moving with general practitioners. When I went to Seattle Cancer Care Alliance, they had me scheduled to come in July 31st for my initial visit. They moved me up to July 24th when they had an extra opening (plus mom calling every day). They had me in for an MRI, Mammogram, and Ultrasound on July 30th. They spontaneously scheduled an ultrasound biopsy over lunch. They had results 4 days later, then scheduled me for an MRI guided biopsy that same week (5 August) to clear up how extensive the tumor was. My pre-op appointment was on 12 August and I was under the knife on 13 August. 3 WEEK TURNAROUND. Meanwhile, from the time I called my Primary Care provider (28 May) until I received the Cancer diagnosis (13 July) it took almost 8 weeks; add 1 week for the surgeon referral (who wanted to do the bilateral mastectomy right then and there) and 3 weeks for the genetics test. I stopped answering their calls after my 2nd visit with SCCA.
0 -
P.S. Octogirl - would you mind shrinking your original post a bit?
Sad and glad at the same time - that list is getting long.- Maybe use the unordered list function?
- Or backspace & use shift + enter to eliminate the double spacing between names
- I wonder if there's a way to make the list 2 or 3 columns....
Thank you!
@Exercise_guru - My clinic (#5 in the country) ALWAYS pushes saline with everything. Even the anti-nausea medication. It's just standard to have extra fluids going in with them. I actually had to use the bathroom mid drip on my 2nd round. As for food, I'm really liking Mexican food. It's soft, it's salty, it comes with sour cream. It feels great on the throat and has a mild flavor that can be spiced up as needed. I'm trying to eat healthy, but things like salmon are starting to smell funny to me. My last nurse even recommended increasing exercise rather than going on a diet so that my immune, vascular, etc systems had plenty of building material to keep my levels above neutropenia. So far, still eating like I'm on steroids. Oh wait! *snuggles with her beloved Dexamethasone*
0 -
I need to be added to this list. Started 9/29/15
0 -
Hello all,
Up until this evening things have been OK Just some mild nausea but now I am into the flu like symptoms which are really bad. Just want to crawl into bed and stay there until they go away. How long does that take?
0 -
tessu that is interesting that your doctor told to thr bad headaches were from Taxol when mine said it was from Aloxi. Excedrin is cutting the edge off for a few hours at least now.
My MO wants to look at my arm after labs tomorrow. It is sore and a little pink along the vein. I might have them put in a PICC as much as I don't want that. If I could easily fly back and forth to the Cancer center I had surgery at I would do it in a heart beat.
Dh is going out of town around the 14 day mark. I am afraid I will be losing my hair when he is gone and need the support. I wanted to see what it did on its own before buzzing it. I have to hurry and get a wig ordered. I am afraid it won't get here in time.
0 -
I went out to the grocery store without my husband who has been my shield. I did it by myself in my wig and I didn't even cry. I'm so proud of myself. I feel like I've grown a little. I know it's stupid but I've not been able to go anywhere without Jimmy since I was diagnosed. It's like some form of agoraphobia. But I broke through and I'm going to be ok. It's so scary not to feel like you're going to be ok or to be afraid to be alone out in public.
0 -
wig liner questions...
Lisa, the liner fits my petite head. It did say petite/large...you may want to call tlc to check..
Exercise guru - I've only worn the wig liner with my halo . Haven't tried it with the wig. Like you I only wear the wig in crowds and as soon as get in the car and am on my way home, I switch out to a cap because my hair is just hot and sweaty.
0 -
annie, i really like your wig!I have been going out to alternating my halo and cap with attached hair and it feels good to look normal. I wish I was more comfortable with my wig though..
0 -
I've been wearing it a little more each day. It's so hard to get used to. I have the liners too but I haven't tried them.
I look at the cysterwigs.com video reviews and I just want to get to a place like that woman cuz she just rocks her wig and it's everyday normal. You gotta figure bald or nearly bald is going to be here for the next year or better. I just want to find more confidence.
0 -
annie, oops I deleted my post by mistake haha
That's great, breaking it in slowly
I'm not used to my wig yet... So I use my halo from tlc. I can wear with a cap and kerchief...helps to feel "normal"..0 -
I got that halo but I really hate it. Maybe I need better hats.
0 -
yes annie. I got hot from the caps and switched to a kerchief! I can't wait for beanies in the winter. You just need to keep playing with your hair:)
0 -
I feel so shallow being so consumed by hair, but it's just so horrible! Lol. I think of all the times I went out with a greasy bun and I'm just ashamed!!!
0 -
AnnieB you rock! I still have not done the buzz , just got a shorter haricut and am shedding a lot because my 14yo is still having a really hard time with this and I want to ease her into the changes. She has homecoming this weekend and I will wait until after that to buzz it off. OTOH 12yo DS wants to help give me a buzz cut
I still have not found a wig I like. I have been wearing my scarves and such with my wispy bangs peaking out just to get used to wearing them. The problem is that it's still 104 degrees here is AZ and it would be too hot to wear a wig anyway!
0 -
Geez I think you'd stroke out in a wig in those temps! My kids are little and autistic so it was a little different. My 4 yo sees me and pulls up his hair and says "my hair" like he wants his to come off like my wig. They both rub the fuzz and giggle.
0 -
Welcome to Hazel and Grammy 4! We are the coolest group of warriors around!
carolinaamy the video is awesome! We ALL need to fight for keeping mammos at age 40 at the very latest!
AG3 - I just ordered my cool caps too. now that all my hair is gone and the hang-ons shaved offf my head feels so much better.
Grey - So very glad you are going to continue to hang with us. We will support your decisions and be there for you no matter what.
Day 7 after 2nd chemo and my mouth is raging! Calling MO in am for the Magic Mouthwash. Salt and baking soda water just not cuttin it this time.
Here I am, bald as a cue ball! I had my son buzz of the stuff that was still hanging on. My head feels great.
Hang in there my dears. We can make it through this crap together and stronger in the end
0 -
One of my fav hats scored at Cracker Barrel paired with a wide navy headband
0 -
Welcome Grammy4 and I added you to the list. We are glad you found us.
And yes, I was able to edit to reduce the space of the list. Thanks for the tip on how to do it and I hope it helps. Two columns may beyond me right now, both in terms of technical knowledge and my current (low) energy level :-(
Hugs to all
Octogirl
0 -
Lila -claire you are my hero!! You are so confident and gorgeous! I need to get better earrings, I tend to like small ones but I need to be rocking some dangles for the next year or so.
Grey - you are loved and we are always here for you. No one should be treated that way {hugs}
0
