Chemo May 2013

MichelleRN78, I will be starting chemo on Tuesday and my cocktail is the same as yours. How are you holding up? Any advice you can share? I had my chemo teach yesterday so I feel as prepared as I can. I'll be getting the 3 every 21 days and the Herceptin every week. I'm nervous but as with everything I'm just taking it day by day.

I hope you are doing well.

Oy, I just saw you did comment to me before but if you think of anything else, please let me know. Oh, and what is a buff in regards to a hat or head cover?

Thanks!!

Okay... So all positive thoughts and such that I put out there about the hair loss kicked me in the rear tonight......



Our 4 year old granddaughter (OMG... She's so great) is staying the night with us.... So we took her out to dinner at one of our favorite places.



I've been fine sins buzzing my head going to the convenience store or the grocery store I visit almost daily.... But as we were finished with dinner and lots and lots of people were piling in, I started getting anxious... I felt like everyone was looking at my head! THEY WEREN'T... But I felt like they were..... I left my sweetie and granddaughter to pay the bill and felt like a linebacker making my way through the croud to get out if there to the car! I fought back the tears until I tucked Madison in tonight & now I'm angry that I couldn't handle a dinner in public??



I'm sure it will get better, but after all the positive feelings I had about it all, I was surprised at my reaction/behavior! Ugh.... Maybe I'm just having a bad night....



Have a great weekend everyone! I hope you all are feeling your best!



Happy thoughts

Lorrie

Redheddmom. I would call you Dr about the mouthsores. They should be able to give you something. My tongue and part of my throat turned white and I had a slight temp. (93.3-93.5) Nurse told me it was thrush and I got a script for a mouthwash and took Tylenol. When the mouth cleared up and the temp went down yesterday I felt much better. I was hesitant to call because it wasn't "awful" but I am glad I did. And I will know for next round if it happens again.

Good afternoon ladies



Am having a down day! Went out with friends last night and had a great time. Was first time since chemo began. Should be in great mood today but instead just feel depressed. Think eldest dd age 24 is frustrated with me. DH wants to know what he can do for me and I have no answer. I don't know what to do for me!

I learned from a friend who just finished her treatment for BC that there was a movie of the week in 2008 called "Living Proof". It is the story of the doctor in Los Angeles who discovered Herceptin and the struggle he had getting it approved for use. He knew the drug worked for a percentage of BC patients (HER2+)  however all the typical funding sources turned him down. So he reached out to people in the community....Hollywood in this case and finally got funding from Lilly Tarkinoff (producer) and her husband Ron Perlman of Revlon who personally funded and fundraised for the research required for FDA approval. The rest is history as herceptin has saved untold lives of women with aggressive HER2 breast cancer. My onc told me that Herceptin alone has changed the survival rate for most stages of HER2 cancer from dismal to similar to stage 1. Said because of it I would live to a ripe old age. So, of course I'm loving the stuff! I call it my golden elixar and noticed last week during my infusion that it actually seems to have a gold tinge to it...or maybe just my imagination?

The doctor is played by Harry Connick Jr (easy on the eyes!). I have not seen it yet but plan to over the weekend. Netflex doesnt have it but you can download it from Itunes for $10. Youtube has a few of the trailers so you get the gist of the movie. I thought others may be interested in  seeing it as well since we are so directly impacted by this man's story. He's definitley a personal hero of mine!

Annie

I am finally feeling better today. Still in the hospital tho because I started diarrhea again this morning but I think we got it headed off. I'm ready to go home. They said my white count was back up to 2000 so it has more than doubled. All I can say is this first treatment has been rough but hoping next one wont be as bad since I will get the neulasta shot.



Hope you all have a great weekend.

Hey ladies. Im a 45 yo married mother of 6, ages 7 to 23 and grandmother of 3, ages 5 months to 3 yrs. I'm of African American and Hispanic descent. I'm reading all of your posts and see a lil of my journey in lots of your stories. I had a normal check up in May 2012. On 01/01/2013 I was in the shower getting ready to return to work from holiday vacation and felt a lump about the size of a jack ball in my lower left breast. I immediately got out the shower and ,called my gyn. The doc on call advised me to go immediately in the am for a mammogram which of course was abnormal. Long story short I went for the lumpectomy that Friday and by the following Tuesday was told it was cancer. Because I had already been told of all the tests and treatments I would have to undergo I applied for FMLA medical leave from my job the next day, January 9th, 2013. By the time the blood work, scans, tumor margin revision, and sentinel node biopsy were done it was determined that the cancer had not spread to anything but one mammary node under my breast bone (it can't be reached with surgery) my cancer is triple negative, and I carry the BRACHA 1 gene. I started dose dense chemo beginning with 4 rounds of AC February 18 then moved on to 4 rounds of Taxol April 22. With my first round of AC I had nausea for the first two or three days, throat soreness, and terrible mouth and gum pain. My NP Jennifer prescribed Acyclovir for the problems with my mouth. It worked great. The week of chemo I was very tired, but during my off week I could almost get back to normal. The weekly shot of Neupogen did not cause me any issues at all while on the AC. During the next 3 rounds I would have the same nausea for two or three days but my mouth, gums, and throat never hurt like they did with the first round. The fatigue did get worse with each round, by the 4th round I was in bed for a week after chemo. My hair started to shed during the 3rd round of AC but my brows and lashes weren't affected. With the Taxol I have had no nausea but I did lose my brows and lashes. The worse thing with the Taxol is the pain. Starting the day after my Neupogen shot my whole body hurts. If I had eyelashes I believe they would hurt. My chemo day is Monday so the pain is at its worse Wed, Thursday, and Fri and usually easing up by Sunday. Taking Claritin D helps. Also have your vitamin D checked. Mine was 12. Normal range is 30-75. I was put on 50,000 units of vitamin D once a week for 6 weeks to start. I get by with 400 to 600 mg of Motrin and Lortab when the pain is at its worse. I have slight neuropathy in my fingers and toes, but it hasn't lasted more than a week after my Taxol infusion. Honestly even with the pain I'll take the Taxol over the AC anyday. I have one more round of Taxol and then on to a double mastectomy and the start of my reconstruction June 24. Sometime in late July early August they are gonna radiate that lymph node that showed positive on my PET scan. So that's my story so far. It has been interesting to say the least and even though I've had some hard days I have to say that time has flown by. It seems like I just started chemo and here I am almost at the end already. As far as side effects the only thing the docs can do is tell you all the things that can possibly happen to you but what actually happens and to what degree seems like a very individualized thing. The good thing is that most of it, the hair and weight loss, pain, appetite issues, and neuropathy are all temporary. I bought a few wigs but since its getting hot out I've now mastered cute scarf styles and a good penciled in brow. Someone on the site said that they were scared but excited to get started. That's exactly how I felt. I have had great family and friend support and the absolute brightest day I've had since this started is finding out that my oldest biological daughter that just gave birth to my first granddaughter did NOT inherit the BRACHA gene from me. Every time I think of it I smile. I'd go through this a thousand times to spare her. More than anything my belief in God and his unwavering love for me has made this time bearable and I look forward to the end of this year when barring any complications I'll be riding off into the sunset with my new boobs cancer free. God bless everyone and please feel free to ask me anything.

MickMartin...

Sorry you have to join, but thank you for opening up to us...... ! I don't know about previous month's forums.... But this one rocks!



Happy thoughts

Lorrie

Yup! Pat.. Cancer sucks... But we are better than it! Have fun tonight! & tomorrow!



Annie... I'm gonna look up the movie! We have web TV and told my sweetie about it and he was all over it... " tell me when u want and we'll watch it.... At least it's not sic-fi!



Haha!



Happy thoughts

Lorrie

Hi to everyone new in the last few days. I feel like I've missed so much just having been gone for a day or two! 

Got my arm port put in on Friday. Though I was awake for the procedure, we made a good time of it. I trained as an opera singer (though it's not my career path anymore) so I sang a bit for the doctor and his staff before we started (by request). During the actual procedure the Dr. turned on some Crosby Stills and Nash and Simon and Garfunkel. I hummed the whole time for distraction, and everyone was really nice. Provided the port works well for my treatments, I will be a champion for the arm port system. It's small, still a power port, and conveniently placed on the inner part of my non ALND arm between my elbow and shoulder. I am sore, but it hasn't been overwhelmingly painful. I took some tylenol the first day and have been fine dealing with it since. So glad I was assertive and made sure to find a doc that would place it in the arm instead of the chest. I just didn't want to deal with another scar there, or the pain of the chest placement.

After making it past day 6 last Monday, things have been getting better each day. Not looking forward to starting the cycle again to repeat the bad days, but luckily it was only about 48hrs of feeling pretty bad. Dealing with some slight GI issues the past 5 days or so (running to the restroom about 10minutes after every meal, even after my morning water) but I'm still able to go about my normal day-to-day. 

No hair loss yet, though my hubby thinks it's starting to happen. We laughed making pancakes the other morning that I should step back when turning them so they're not full of stubbly hairs! Gotta laugh. 

Taste buds seem to come and go. On the bad days they were such a disappointment, but seems like I've got my sense of taste back, in general. I'm just a bit pickier about what I'm eating. If I am hungry, it better be really delicious! Anyone else find that the taste buds come back each cycle after the bad days, or after a while will they go completely until the end of chemo?

I hope everyone is able to enjoy a bit of the Memorial Day weekend. We've had cold temperatures here but at least the sun is shining right now, and I can enjoy the hummingbirds outside the dining room window.

Pat - if you don't mind me asking, where did you find your pink wig? My ten year old is begging me to get one, and I figure anything that makes it easier for her is worth finding.



I finally got out and went wig shopping yesterday. My hubby went with me, and we laughed our way through trying them on. It helped that the saleswoman kept asking if a particular wig was for regular time or fantasy time, and so we tried on some over the top "fantasy time" wigs just for fun. Let's just say that fantasy time wigs look horrible and ridiculous on me. LOL. I did manage to find one that matched my hair color really well - red with highlighted blonde (or in my real world case: gray), cut in a cut shaggy bob that is fairly close to how my hair looked before the most recent drastic cut.



My hair hasn't even begun to fall out yet, but I wanted to find something I liked well before that so I wouldn't be shopping in a panic. We have to go to a formal business event in a couple weeks and I didn't want to go in a turban or scarf if I could help it. It looks kind of like this:



http://www.tlcdirect.org/Beth-Monofilament-Wig-Hair-Loss-Product-American-Cancer-Society-TLC-Direct?did=94



In the "glazed strawberry" color. That isn't quite the wig, but it is close, and it shakes out nicely into a good style without much fussing, which is good for me because I am horrible at styling hair under the best of circumstances.



Started running a fever after we got home yesterday. Went to bed early and got 12 hours of sleep last night, but the fever is still up today. I am at 99.9 F, so I am not calling yet, but will definitely keep an eye on this. It is tough on the front edge of this, having just had my first infusion last Wednesday, to keep from overreacting. I suppose you get used to the ups and downs at some point...or do you?



Welcome to micki and ljaegar - sorry you have to join us at all, but this is an incredibly helpful and supportive group.

Kate - if you can do citrus at all, a slice of lemon and a slice of lime have worked wonders for me in terms of taste. We picked up some crystal light lemonade and raspberry lemonade single serving packets yesterday, too, which allows me to add flavor as I want it. For some reason, sour works much better for me right now, even with a few sore spots in my mouth. Also, Popsicles have been a godsend - I count them as liquid since they are just ice anyway.

Reddheddmom,



Google pin and white wigs to find some options to look at

https://www.google.com/search?q=white+and+pink+wig&ie=UTF-8&oe=UTF-8&hl=en&client=safari



If this image show like it did on my screen, my wig looks more like the one with the blue,pink and white, but I REALLY like the one that is on the second row, short, somewhat "messy". None of them is "me",but what the heck!



I saw mine sitting in a dummy in a store window as I drove to the hospital. I knew I didn't want all pink,no the two tone was perfect (did I just say that! Lol). I walked I. And explained my situation and asked if I could purchase the wig. As luck would have it, the woman had a few wigs (not the same) and she gave me the one off the mannequin and put a different one on her mannequin. She had stocked these for Halloween....cost $25.



The packaging on mine says : X-Tensions. Manhattan Hair Inc.

The package does not match my wig, as she didn't have the original package...it says: "tlc"style #7907. Color :pink (the other wig from the package). Size: one. Made in India.

I googled the store and do not see a web site.

http://www.yelp.com/biz/manhattan-hair-trading-inc-new-york





You can try ebay, this one has a more muted pink and white...and is longer.

http://www.ebay.com/itm/New-Cos-Wig-Short-Cosplay-Woman-Wig-Free-Shipping-FreeGift-5-Colors-Available-/110890665064?pt=US_CSA_MWA_Wigs_Extensions&var=410114445169&hash=item19d1994468



If not, try a party store....I'm sure they must have something.

Glad your daughter is into it. Maybe you can get matching wigs!



Kate- I went down the water/juice aisle in my grocery store and saw some of those flavored waters (but they do seem carbonated). I picked up lemon-lime and orange something...things I wouldn't normally drink because I was sick of water by day3 or 4. They were definitely a nice switch. My husband just brought home some f

Concentrated flavoring for water. Cherry blackberry smells really good, I tried it and it was good. The brand was "Mio", I saw Dasani makes something too. Keep trying different things, you will find something.



I agree the taste buds are not the same during a week or so. Not a bad thing, just different and my usual favorites did nothing for me. Eat to eat and stay strong, when the taste buds come back (and they do) you can enjoy your food then.



Itswhatitis. I agree, would love to visit the boards 15 years from now to say hi to all and say "remember when"...I keep saying that soon this will be a distant nightmare. I love to see the survivors come back and say high, they are an inspiration.



MickiMartin. Thank you for sharing your story. You have a lot on your plate with your family. God bless you and all the children and grand babies.



Stay strong ladies and continue to fight the good fight.

Pat