Starting Chemo January 2015

Hi all,

Feeling much better, coughing very little now. See the MO today to get the good to go for my first of 12 taxols on Friday. I hope it will finally get started!

Sweethope--so sorry to hear about your reaction! If this is the end of taxol for you, is it the end of chemo too? what is next?

For those who were asking--I will have a double Mx with DIEP Reconstruction in October after I finish Chemo and Rads (with short recovery time for each built in). I hope it will be the last step in this long long journey.

Jenn

Teri, My jaw dropped when I read you hit the floor! They certainly called code blue if the crash cart was there. The nurses are wonderful, and quick. (I was already stretched out in the reclining chemo chair snuggled under a blanket, so even though I was on the verge of going unconscious, I wasn't going anywhere. And my nurses were all there hard at work on me within seconds...very impressive...very professional.)

Sorry about the picc line fiasco. I like my port and if chemo is over for me, I hate the thought of it being removed. Cancer really does screw with my priorities!

Please post some pictures of your catch soon. Do you have walleye or whitefish up there? Yum!

Teri – that was a crazy eventful picc removal experience!Wow! Glad you were ok to drive home later!I too have started tamoxifen (last Friday).So far all I have noticed is a very dry mouth.I have had hot flashes but had them before so I'm not sure if they are associated with the tamoxifen anyway... I hope taking that one pill will be it also!

Noor46 – What a beautiful picture!I am also getting genetic testing done in May. My dad's sister and her daughter had breast cancer. I'm not sure if they will find a genetic link but I was glad to have the opportunity to get tested. I've got my fingers crossed for you too for negative nodes on your US!!

Sweethope – what a scary experience you had with the allergic reaction! I would have PTSD from it also!Hopefully your MO will have another option for you which may include being done with chemo! I don't have LE right now but it will always be a threat for sure. I'm a bit nervous as I heard that the radiation can trigger it too. I do seem to have some fluid retention in the armpit area of my mastectomy side which I was told radiation can make it worse! The problem with all this stuff is there is nothing you can do to guarantee problems won't happen.Sucks!!Loved your toga pic – it is so hard to believe how far we have come from our pre-dx days!

Tennisfan – regardless of first aid or first responder, I am still in awe of your energy!Continued good luck with NO SE's!Awesome!!The puppy breed is a called a labradoodle but it is essentially the same as a goldendoodle!I will post more pics once we get Bailey home here!

Dstar – I hear you on the ready for healing too! I am essentially 4 weeks now post chemo and I can't believe how tired I am still.I may actually be more tired than I was during chemo.The good thing though is I am starting to get my taste buds back.I just wanted to say also that I wish for NED scan results following your chemo!

Loriekg – I too have some swelling and fluid retention from Taxotere. I believe it can go on for some time post chemo which really sucks.Chemo keeps on giving it seems...

Jenn – happy to hear you are doing better.Good luck with your MO visit today and hope your Taxol gets started this week as scheduled.

Just came in from my radiation information session and now have all my 25 appointment times. They strongly recommend not using anything on your skin and to wash with unscented soap. I'm going to follow their suggestion at least to start. The good thing is that you see them every day so any changes can be hopefully be managed before they get out of control.I also found out that they are taking out my port on April 30^th. Not sure how the skin heals while being radiated but I guess I will find out. I'm going to be glad it is gone as it has been a little painful the whole time.

Wishing everyone a great day!

Wendy

Wendy, so glad you are on the mend even if it takes a while! I cannot wait for port removal as well. I went to a preventative session regarding LE with a physical therapist. It was helpful. A big part of it is weight loss, for those, like me, who are in the overweight BMI range. The less mass you have=less work for your lymph system. The PT showed me that you can help to empty the edema in your arm pit by first taking some very slow, deep breaths. This moves the lymph fluid along the outside of your chest down to your groin area where you have many lymph nodes and leaves the channels along your ribs open. Then you take your hand with all four fingers flat and firmly but gently (too much pressure will just flatten your lymph nodes together) and moving from the inside of your arm close to your arm pit, massage under your pit to about the middle of your rib, and repeat a couple of times, then breath deeply a few times again to move the fluid farther down. I don't know if that makes sense but it is how I got rid of the fluid that built up there after surgery.

Knowing that my "early breast cancer onset" BRCA2 gene mutation gives me some more decisions to make, like maybe a MX on my right side too and removal of my ovaries. Though the worst thing, getting breast cancer, has already happened. I will not do anything for at least a year. It is also the link to my mother's pancreatic cancer, raising my risk for that kind of cancer. I believe she got the mutation from her father as her mother, grandmother, 2 aunts, cousins and sister never had any cancer and all lived into their 80s and 90s. It makes me feel strange to have this information. A relief in many ways, but strange.

Cherylfg - Sorry to hear that cough is hanging on! Hope it clears up soon! I struggle too sometimes with accepting the way my husband or the kids do things. I am winning more of those struggles these days and it helps sometimes just not to notice what they are doing! Doodles are supposed to be a well rounded breed and good with younger children. I will let you know what ups and downs we encounter!

Dana - thank you very very much for the information about managing the edema! I have printed it off and will start doing that! I also have to lose a great deal of weight. I found out today though that I need to keep where I am for now as the radiation measurements were based on that. Weight loss and exercise will be my number 1 focus once treatment is done though. I think just getting more active will help tremendously with that!

Hi everyone... It's been a while since I checked in. I've been pretty down lately. I have a FB stalker. Go me! It's someone who also lives near me. I'm not sure why he's fixated on me but he's very angry and hates women with a passion. I used to have a fake name on FB until he reported that so now he has my legal name and can find me if he wants. I now have a secret account but I'm pretty much cut off from my main support system, at least until I figure something out. As if I don't have enough crap to deal with already. I've been hot flashing like crazy the past few days since I hot flash with any amount of stress. I actually thought they were going away but now they are back with a vengeance.

I think it's about a month since I did chemo but I still have constipation pretty bad. Anyone else going through that still? I wonder how long it's supposed to last. I've been eating tons of raw fruits and veggies and it doesn't seem to be helping.

I'm supposed to go to a funeral for a 2 year old today and wear blue for leukodystrophy. I don't really own much that's blue. Do you think the circles under my eyes would count?

Yes I blocked him but you know how when you block someone who has PM'd you, their name disappears? I had to unblock him in order to report him for harassment so his name would show up and then it would not let me block him again for 48 hours. On top of that, in order to change your name on FB, you have to wait 60 days from the last time you changed it. I am so dumb that I put my legal name in rather than just coming up with a more believable fake name. Also FB has no customer service person to talk to. I called them and that's what it said. It just takes me back to the help area which states you have to use your real name. Period. He hasn't yet done anything that the police could respond to.

Oh yeah... I forgot about that whole exercise thing! Thanks! :-)

SweetHope, I know everyone is different but I hope it helps if I tell you that the more time goes on, the better I feel about not doing chemo anymore. At first I was wishy washy and unsure but I feel like it was my different doctors doing what they were legally bound to do and that is to try to force (scare) you into completing it. I remember hearing something on NPR where they said the vast majority of doctors polled would never do chemo, radiation or dialysis. That says something!

SweetHope, stopping chemo seems like the best decision you can make right now. And Brandi, I am glad you are feeling better. Hope you are healing from your surgery and sorry about the internet creep. FB (and Twitter) sucks in terms of protecting privacy and stopping harassment, much of that directed at women. They don't want to lose any of their data mining and ad revenue opportunities.

I am on a break for 2 weeks to see if the neuropathy get any better. Had the same edema problem last week. I was 6 pounds heavier than usual last Thursday. Back down to my normal weight this week. I though I would try to do three more treatments, but I am thinking not. Rash is on my hands and arm now. Feel like I am walking on heavy grit sand paper. After speaking to the genetic counselor, I have decided to have my ovaries removed and an MX of my right breast when my current treatment is done and I have had some time to recover. It's a gift from my younger self to my 70 year old self and will reduce the possibility of cancer at that age from 45% in my right breast to about 4%. I might stay flat and have pale pink and white cherry blossoms tatooed over my chest.

Wendy, did I explain that when you are draining the fluid from under your arm, you put the palm of your hand flat under your arm fingers facing back and your thumb hooked on the front of your arm, guiding the movement from the top of your arm, under your arm pit, then down toward the middle of your ribs with your arm at least half raised?

Got to go to work! Have a great day everyone!

SweetHope, there is no one I would rather have come and hold my hand during my tattoo sessions then you. I mean it. Tequila would be the icing on the cake, I like silver. How about you? How did your appt with the PT go? Was your MO okay with the "no more chemo" thresh hold you have crossed or that crossed you? I bet you could kick her a** if you wanted to. I mean that metaphorically, of course. hahaha.

The statistics came straight out of my genetic counselor's mouth when she looked up my specific mutation in a data base. She sent me about 10 pages to read in the mail so I read it, got kind of nauseous, and called her to make sense of it for me. I think she said the risk of another primary cancer growing in my remaining breast the first 5 to ten years is 9% but then the risk grows year after year so after 20 years it is 45% but the MX would reduce the risk of getting BC at age 70 by 90%. And I do intend to stick around for a long while yet. The other option for a "high-risk" gal is a mammogram alternating with an MRI every six months. NO thanks to that. She said most women get sick of all the testing after about two years and get the prof. MX. Plus, with this mutation, some research indicates all of the extra radiation can cause cancer. "Test your way to more breast cancer" should be the bumper sticker for that option!

Time for a movie and some sleep.

Good night brave women.

Dstar, Yes, my MO was in full agreement that I could quit. She did tell me of a man who reacted to Taxol and they loaded him with more SE meds and continued his treatments. But I guess when she noticed I had tears in my eyes she realized how traumatic the thought of another Taxol was to me. I really like your genetics counselor. It is great that she wants to share so much knowledge with you.

Brandi, Thanks for the picture. My peach fuzz fell out after first DD T. I'm a shiny head now. You look beautiful, but your sad eyes give you away. I wish I had a magic potion for your hot flashes. Just don't carry a gun...too tempting! I'm ready with the tequila bottle for you, too.

I know this is TMI, but I peed out five pounds of fluid last night (every hour, on the hour) after taking a diuretic. It is not advisable if you have LE because it removes the fluid but leaves harmful protein. But I asked my therapist yesterday and she said as long as it is not just to reduce LE swelling. This is the second time my body swelled up that way...other time was after AC#3. Thanks, cancer!

JStacy- sorry you are having so many problems sleeping. I am having similar problems with insomnia/ hot and cold flashes. My ND recommended Calmes Forte. It's over the counter and is 8.99 for 100. It really works. It is natural and I got it at Super Supplements or any Health Food/ vitamin Store. You can take 1 to 4 an hour before bed. I took 2 and slept straight 6 hours. I have been able to nap too. The Ambien and Restoril wasn't working for me either. Get some rest.. We need it.

SweetHope. I am sorry you are having so many issues with edema. Hopefully this will stop now that your done with chemo. Not easy for you to sleep either getting up to pee every hour. Every week on Monday I celebrate I am done with chemo. This Monday will be 6 weeks. I go for my Herceptin infusion though. Not sure if some of the symptoms I had last herceptin only infusion were from left over chemo or from Herceptin. Achy all over. I was only able to complete 4 of my 6 chemo cycles but I chose to listen to my body and say no more. I know you are worrying about this too. Your body was telling you know more Taxol!

Brandi. Thank you for the picture. You have beautiful blue eyes!! My hair is exactly like yours!! Same color and length. I am about sick of Facebook too. Rarely use it anymore. I think we are both emotional and tearful about our surgeries. Mine is coming fast. A week from Monday. I planned meals and went to store to stock up. I am on a special diet too so this will be a challenge after surgery. Hang in there we will get through this. We have to!!

DStar. I am sorry about your neuropathy and edema. I still have some also. It's better but my fingers and left heel have a little. As you get farther from chemo it will decrease . I have been thinking about pro MX to left when I recover from right for the reasons you mentioned. All that testing and anxiety. I don't need it. I just don't want to do it all at once. Hope I am not sorry.

Good night my sisters. Love to you all.

Brandi wish we could be together for each other's surgeries. Does anyone have a magical broom or small Cessna ?? Xoxo.

PMR53

Hi all,

I got my first taxol infusion yesterday with no issues, at least with the infusion. Unfortunately, the day started with the pharmacy calling to ask if I had bloodwork done because as usual my results hadn't been entered in the computer (I get my blood work done at the military clinic and the two computers don't talk, so it is always faxed direct to the nurses), then I got a call from my Oncologist's assistant saying the counts were too low and that I had to go immediately to the hospital to get the blood work redone to see if I would get treatment that day or be delayed. Talk about added stress!! In the end the counts were ok both days and the nurses couldn't figure out why I was sent for a second test. *sigh* I would love to get at least one treatment without blood work complications! At least the first one is down with no allergic reaction. Feeling ok, a little nauseous last night and defintely spent all today with a flushed red face and energy I am sure is from the steroids. Waiting to see what tomorrow, Monday and Tuesday bring--waiting for the muscle aches and tingling fingers and toes. Cold seems to be finally on it's way out!

For those struggling with sleep--I was on zopiclone occasionally before I got sick, but now with chemo I need to take it every night. It works well for me, and if I do happen to wake up I can take another 1/2 tab. Helps a whole bunch with the fatigue. I will probably have to be weaned back when chemo is over to reset my sleep cycle, but I have had to do this before and it is not too bad.

I hope all is well with all,

Jenn

hello, Noor,

It's been awhile since I've posted, but I had breast reduction surgery on my natural breast recently, and found out I need raloxifene due to Atypical ductal hyperplasia in that breast.

Don't be scared about chemo. It's a very good thing, side effects and all. Much better than that big, bad side effect that goes with no treatment.

I was dx in '06, IDC, ER/pr-, her2+. I was busy getting well for a year, but got right back into the stream before all my treatment was done. Lumpectomy, chemo (adriamyacin and taxol) radiation and herceptin for a year. And I'm still here!

Just hold your nose and do it; it will be in your rear view mirror sooner than you know. Count all those treatments down!

EileenG