Starting Chemo in April 2014

Lily I will be thinking of you tomorrow! I hope your SE's surprise you with how mild they are!!!! 

lilyrose53 I thought you probably knew about the risks, but just wanted to be sure Don't worry about the bone pain, I did and it never came.  I am glad your daughter can help you.  My daughter lives out of state and she came home for spring break.  No joke, within an hour of her getting here I started feeling better! Nausea went away! Woohoo! They are good medicine for us moms  

Hi all, hope everyone is coping well. Thanks @Kazzy115 for starting this forum.  I start chemo this Monday and lm just so nervous!! I was told l did not need chemo after surgery and my onco type test came back really low...l was in remission for 2 and had just finished the 2 day Avon walk when l had recurrence in my cervical neck bones. Radiation took care of the pain but unfortunately the cancer seems to want to stick around even after the Radiation and hormonal therapy. 

I love this site for information and support, l look forward to getting tips on how to cope while on Chemo. Best of luck and prayers for hope and healing to you all!

Susan

Ann/mmtagirl - thanks for the report.  Hoping the effects of the steroid have worn off so you can get some rest. Glad you were feeling ok otherwise.

Nana - hoping things go well for you today with your first treatment.

Longislandl8y - glad your daughter made it safely and is a comfort to you.  I imagine it also means a lot to her to be able to be with you as well.

Susan - sorry you are having to deal with chemo, but there is a very nice group of folks here to provide support.

Lilyrose - Good luck with your port and hope you feel better soon.

Kazzy -thanks for the links.

Welcome Misszed & Mompv.  You will find great support here as well as answers to questions the doctors/nurses failed to address.  Sorry you are here, but it will all be good because you're taking care of business - we all are - so that life will be good for a long time once we're done. 

LilyRose - sorry you had such a crappy day.  That headache might be from the chemo.  When I went for my 1st infusion they said some people get a bad headache and that if so you should tell them to slow down the infusion the next time because it definitely helps avoid that headache. 

SharonDe - thanks for your kind words about daughter. And yes, I think it was important to be here even more so for her, than for me.  Honestly, I worry more about the kids than myself through this...

Today I am reveling in the fact that I feel so well 9 days after my first infusion.  I plan on getting lots of exercise and spring chores done before the next infusion on the 29th.  I was able to complete 90 minutes of cardio, strength, yoga at the gym yesterday for the first time since before my diagnosis.  Felt like a million $.  It was exhausting and my left shoulder wasn't up to the task completely, but overall with some modifications I did pretty darn well

Hope everyone has a great day today!

Hi Everforward - I have been trying to get that answer for awhile and what I have currently been told by my cancer treatment center is that I will pay my specialist copay amount each visit.   I still waiting on the final answer reference the cost of the chemo drugs but can't seem to get anyone to give me a straight answer yet.  I have an appointment with my MO tomorrow and will meet with the financial person there to see if she has clarification yet.  

Everforward, I had Aetna at the time of my treatment (through cobra, but that's another story) and only had to pay out of pocket a $40 specialist co-pay at each infusion.  I saw my oncologist before each treatment.  You're right, those chemo drugs are ridicously  expensive, as is the neulasta shot, and 30% of that would be a hefty bill.  Isn't there a max out of pocket amount with your policy?

Before chemo started, I received a phone call from the hospital billing department telling me that I would owe approximately $10,000 out of pocket for chemotherapy- and did I want to speak to a social worker for help with finding financial assistance?  I was shocked.  Turned out, they were completely wrong- so check and double check directly with your insurance company.

Call oncologist for pain meds. I had horrible bone pain in my legs first round of TC. Finally called on a Saturday night and got OK to use my unused Oxycodone from surgery. It saved me. Do not suffer with extreme side effects.

Hi April start friends. I had my first TC treatment today. The infusion itself went well….I felt a little off toward the end of it, not bad - but off - my head seemed like it had pressure not really pain. I actually then went to a staff meeting but an hour after I had left the infusion center I started with a terrible headache. I took advil and it helped slightly so that I could get a walk in (per my MO's instructions - exercise every day.)  The headache has really not stopped. No nausea at all - I ate a small dinner and no problem at all! The happy thing is 1 down and 3 to go. I think it is easier to have started than to be still waiting to start.   I hope I don't get a headache like this every time. The only other issue is metals taste but that is not bothering me. 

I hope you all are doing well. 

Ladies, I feel like I've missed a TON of stuff here, but I literally have been SLEEPING for the past couple of days. I have never been so tired in all my life - I actually fell asleep in the middle of EATING A SNACK. True story.

I wanted to comment on the whole hair thing. Three weeks ago, I walked into the salon and told my stylist about my cancer. And I told her to do the pixie cut thing. And I gotta say, if you're thinking of getting a pixie cut before chemo takes your hair, JUST DO IT. Seriously. Don't get me wrong, it is HARD. I cried. I had finally, after YEARS of fighting with it, made peace with my unruly wavy hair. I had finally figured out how to manage it. I was attached to it. But in the end, I found that I really really REALLY liked the pixie cut. It is so EASY, you know? And, personally, at the risk of sounding completely and utterly vain, I think it's adorable. I can sleek it back, or spike it up, or do a combination of the two. I may just decide to keep it this length afterwards too. Here's an "After" photo:

Today, two weeks less a day from Round 1, I woke up to a scalp that was HURTING. And it didn't take long before my hair started falling out in handfuls. SUPER GROSS. Like GAG gross. And I am SO HAPPY that it is SHORT hairs falling out, and not long curly locks. Because that would be even MORE super gross than it already is. The Big Shave is happening this weekend. It's kinda scary. Because YOU JUST NEVER KNOW what's going to be under the hair. Like, what if there's some freaky birthmark? Or a weird tattoo your mom never told you about? If I find anything really cool, I'll definitely post photos.

In conclusion, don't be afraid to go short BEFORE the chemo takes your hair. Choosing to cut it all off myself made me feel like I was in control. It wasn't easy - I found it harder to say goodbye to my hair than I did my breast (because my breast was TRYING TO KILL ME), but I can honestly say that The Big Shave feels less traumatic now. 

Nana: I have a headache EVERY. SINGLE. DAY. It's managed with Tylenol and a disgusting amount of water, but it's always hovering. I'm thinking for me it has to do with sinus issues. The chemo does attack the protective lining of the sinuses, which can aggravate allergies. I'm just guessing though. I hope your headaches improves. 

LongIslandl8y: You are my hero. 90 minutes of exercise! Woo hoo! I, alas, can barely make it up the stairs to bed some days. I was so active before chemo, so I really thought I'd be able to at least go for a 30 minute walk every day. But, NO, that tires me out even more. Add that to the need to keep my stomach full at all times in order to manage the nausea, and I think I'm going to have pounds to drop when this is all over. Eeep. :O

P.S. They never did find the source of infection. Apparently, they rarely do. Whatever. I'm still on some crazy big-dose antibiotics that make me nauseous and a bit loopy. Good news: while I was in the hospital, my fantastic husband hired a housecleaning service for the remainder of the chemo. Yay me!

Cold in canada... I totally agree re: the haircut!!!  You look marvelous, darling!!!   I cut about 12" off just prior to my 1st surgery!!!   Once I mustered up the courage, I was so glad I did. I had to go back to the hospital when I got Staph.  By having it short...I could totally wash it in the sink in my bathroom.  I would not have been able to do that with the long hair!

Hi ladies!

My internet was out so I wasn't able to access the boards.    My first chemo was Wednesday morning.  DD went with me.  Saw the MO first then onto the infusion room.  My nurse, who was truly an angel, started with flushing my port.  That went fine, except when she tried to draw a little blood out-nothing.  She did everything possible, and still nothing.  Two other nurses came over and tried-nothing.  So she went to talk to my MO.  He said he didn't want to delay the start of my treatment, so we would have to do an IV.  ugh.  Nurse got one started in my arm and began administering the first anti-nausea drug.  It went ok, but my arm started to ache.  When she started the second drug, it soon became an all out burning pain.  She checked her 'stick' several times, and the IV was in correctly.  She decided to remove that IV and began a new one in my big easy-to-access vein in the crook of my arm.  Then in went the red devil, which she had to push.  She did a good job, talking to my daughter and I through the whole thing.  It helped take my mind off what was going on.  After she finished she hung the bag for the Cytoxan.  That went well.  I was surprised that when I needed to use the rest room about ten minutes later, that I was already peeing red!

There was a volunteer there from the ACS.  She was so nice.  She had me come into her office as soon as I was finished with my infusion.  She showed me several nice wigs.  I chose one and then she pulled out a huge bag of scarves and told me to take as many as I wanted.  Also got to go through a bin full of nice, soft crocheted hats.  I was also given a cute heart-shaped SOFT pillow, which fits nicely around the back of my head when I sit in my lazy-boy chair at home.  All of this was free!  Everything except for the wig, was handmade and donated by church groups.  I do crochet, so I think I'm going to make some lap quilts to donate back.

My daughter and  I even stopped at the grocery store on the way home.  I was feeling pretty good.  As the afternoon wore on, I started a terrible headache.  It just would not let up.  Finally, sometime after midnight, it started to get a little better.  I went for my Neulasta injection this morning, that was easy.  I am taking the Claritin and Advil as directed, so hopefully, won't get the bone pain.  But I still have a slight headache that I can't shake.  I am eating ok, just sticking to small, frequent meals.  I really don't have an appetite because my taste buds are off.  I am drinking tons of water to flush my system. 

Longisland - Thanks for the tip about the speed of infusion.  I will ask about that next time.  Having our daughters with us is the best medicine I can think of! 

SharonDe - Thanks for your support!  I was supposed to have a dye test and x-ray on my port today.  However, the hospital messed up, so it won't be done until Monday. 

Nana - Sorry you got a headache too.  But I think for me, I'd rather deal with a headache than nausea.  I sure hope you are feeling better!  I was thinking of you all day.

Cold - I was beginning to worry when we didn't hear from you!  Glad you are ok.  I love your haircut!  You look adorable!

Hope my April Chemo sisters are doing well!!  My chemo now starts on april 29th due to my healing issue - which is ALOT better.  Told my MO that I was getting a 2nd opinion next week on the chemo regime and he was VERY HAPPY and I was so nervous to have that conversation with him.  He said he was torn between two plans and have Moffitt Cancer Centers recommendation was great.  I really like him 

Yes, to the whole being strong thing.  Sometimes I do feel strong, but mostly one day at a time.  I think the more support you can get from family and friends can help greatly.  I am blessed with a husband who is with me all the way, and he likes to cook!

Also, even though I don't feel like it I have found exercise helps both mentally and physically.  I go to a local YMCA for easy water aerobics and take a seated yoga class at the senior center (I am 70).  Other days I walk around the block.

One thing I did do that helped make me and others laugh was buy funny cancer tee shirts to wear to treatment.  I have 'Cancer Sucks', Chemo Ninja Cancer Assassins', a 'Winnie the Pooh', and one I made with a sparkly BC cancer ribbon.

My sister says "you may not like it, but you have to do it".

Dee

Dee-  Yes - I am thrilled with his attitude - he absolutely wants to hear what Moffitt says and gave me a note to give to my MO at Moffit with his contact info on it.  

Lakegirl - He earned my total trust today as I see he is someone that I can say anything to now about my treatment and he will hear me.  That was great to find out early on.