Starting Chemo in April 2014

Hello chemo sisters. Just checking in to see how everyone is doing. Are the PFC ladies regaining their strength? Any stories of new hair growth to share? I'm 5 days PFC and the worst of the aches and pains is done. Now I'm just dealing with the typical tummy/digestive issues and the fatigue fatigue fatigue. The last infusion was an emotional roller coaster. Seriously, I felt like I was bipolar - one minute scared to death and anxious about having to do this again, the next minute so happy that this was the last one. I've stabilized emotionally for the most part. I just need to make it through the next few days and then I'm off to California to visit my family and my cabin for a glorious 2 weeks. 

You ladies have been my strength and sanity through all of this. This has been my safe place, my venting place, and my I can't be strong anymore place. We are getting through this, even on those days when it doesn't feel like it. Hugs to you all.

Swiss.  Let me know how it goes.  I just know it works for me.  If I have spaghetti, garlic bread and dessert I might as well kiss a comfortable night good-bye.

Got to go away this weekend to an agility trial 5 hours away AND got to see my younger son whom I haven't seen since Easter.  Hubby drove the RV so I got to sleep almost the whole drive there.  I was SO tired on Thursday due to steroid crash from treatment on Tuesday.  Each day got better and better in terms of my head clearing and general energy level.  I went back to the RV mid day each day and slept as there is still a lot of fatigue. I am trial secretary for agility trials, so needed to be there but didn't run my dog.  That is going to have to wait for several more months :-). 

Even though I did talk about cancer as there were so many people that hadn't seen me for months and most didn't "know", it also felt good to talk dogs and agility again and be somewhere other than in bed, on the couch or in a medical facility :-). Just like a "normal" person :-)

While I was getting my Herceptin last week, several of us were commenting that we had the same "hair style". One of the gals must have had a reoccurrence as this was her second time having to go through chemo :-(   She said that last time it took about 3 months before she had enough hair to go out without something on her head".  

Feels so good to know that as the SE from last week's treatment subside, that it is the last time I have to deal with them! :-)

Ladies! I hope you are all well. I wanted to check in and see how everyone is doing. As always, my thoughts and prayers are with those in the chair and visiting that awful Dark Place.

I am a little over 3 weeks PFC, and I'm happy to report that the Chemo Brain is nearly gone. Hooray! I also have some very fine, very WHITE stubbles all over my head. It's very little, but it's there! It's also all over my legs, which means I'll have to start shaving again. Dang. Also my taste buds are back to normal - so coffee and I are BFFs again. So Awesome!

UNFORTUNATELY, I am still dealing with the deep muscle pain. Every single morning I wake up feeling like I've competed in an Iron Man the day before. It got really bad after Round 4 and hasn't let up, so basically I've been in pain for 9 weeks and counting. My MO tells me this is normal and to give it time. Apparently it could last for another couple of months. Yowch! To make things worse, I've gained a total of 17lbs throughout chemo. I was told that half of it is likely water weight, and again, it will "just take time." But some of it is the result of carb overload and no activity. And I can't exercise because of the muscle pain. I've been taking tortoise-paced walks, but that's all I can manage. SOOO frustrating. Some lingering tummy issues too. GAH. Why did I think that the end of chemo meant a magical transformation to feeling fabulous?

Can you see how impatient I am? I KNOW it takes the body time to heal after pumping it full of poison for months. But I WANT IT NOW. Like Veruca Salt: "I want an Oopma Loompa Daddy! I want it NOW!"

ANYWAY, I had my first Only Herceptin treatment this past Friday and everything went well. I can honestly say there were no side effects. I was a little more sleepy that night than usual, but other than that...nothing. What an amazing feeling to walk into and out of the Chemo Lounge knowing that the Dark Place wasn't waiting for me! 

A friend shared this with me on FB, and I thought I'd pass it on to you. We are SO much STRONGER than we think. 

Run like a Girl, Swing like a Girl, FIGHT like a Girl. Damn straight! 

Take care Ladies! 

Timbuktu...I'm so sorry about this situation.  I wish I could say something that would help make sense of it.  ((Hugs)). I am glad you went against doctors orders and endured the two extra infusions...if you hadn't, and these "meaningless" tumor markers made their appearance you'd have regrets.  Your instincts are good, but I do wish your MO made you feel more confident in her decisions.  Maybe ask her to have a colleague take a look at your file, or see another MO before you see her in three months.  

Timbuktu,  So so sorry that you are having to endure all this uncertainty.  After all, we are NOT the experts.  The MOs should give us a plan with confidence that it's the best possible plan for us.  I agree with Swissmiss that you might consider getting a second opinion outside of the practice you are in.  Or, ask your MO to have another doc in the practice look at your records and offer his/her opinion.  If your MO is the only one in the practice that specializes in bc, then I would go elsewhere.  A good doctor should never be offended by another getting a second opinion.

Will be keeping you in my prayers.  Hang in there.

The thing that bothers me the most is that your oncologist didn't want to explain it to you.

1) How can you make good decisions if you don't have good information?

2)it's your body and you make the decision

3) you are paying him/her so they are your "employee" 

She told me I had until today to decide.  My husband was really angry too, that she didn't want to explain.

I really can't process this so quickly.  I thought I was going against her orders in having more infusions and that I was compromising by cutting it short by one.  And now she's saying I should have all 6?  And the sixth is most likely to create the life threatening reaction.  IT's just all too much!  It helps that you guys understand, truly because it's crazy making.  I'd been psyching myself up to do the "right thing" and not have the sixth and now she's turned the tables on me.

BTW, initially I did get 3 opinions.  Sloan said no chemo.  Anderson said no chemo.  She was the only one who said "chemo".  Then I went back to sloan and the onco there changed her opinion and said "chemo, all 6".  So I went back to my local onco and here I am. 

I'm really at a loss and you are so right, I am in a dark place and I don't trust myself to decide.  Of course I want to feel better, physically.  But I want to do the right thing for the long run.  Something she has been pressuring me NOT to do.  

Thanks for the support.

The sixth should have been yesterday.  The nurse just called and told me my tumor markers are way down.

She said that was good but of course I'm wondering if it's because the chemo is working on something.

My husband, without telling me, had called and asked for the name of the disease she mentioned.  That was sweet of him.  

The nurse said that I'd made a reasonable decision.  That I've been through a lot.

She's a sweet young girl but of course no one really knows.

The dr really did not handle this well....  

Cold had a bad reaction to the sixth carboplatan.  I asked my onco nurse about it and she said yes, it can be life threatening.  As I had been advised not to have chemo as well as to have chemo I thought I should probably skip the sixth infusion, especially since I'm struggling so with side effects.  But now I'm not so sure.

Does anyone else have tumor markers going down with chemo?

hi brigadoon, I remember that you were an outlander fan. How did you like the new book?  I loved it. A friend went to see Dianna Galbaldon speak and , feeling bad I could not go, she got me a signed copy addressed to me.  Did you see the new shoe on starz? What did you think?  Has anyone else watched the show?

Timbuktu, I'm sorry you are facing this decision. I would say yes to doing it, then get the second opinion. You can always cancel #6 if you need to. 

I'm on the chair having taxol #4. 

Be well everybody!

Timbuktu is that you Ca125 number ??

Number 10 is in the books!  Did I mention that I NEED hair, sooner rather than later. 

Blueberry -loved the book.  Can't wait for the next one.  My favorite place for them to be is the mountain (if they can't be at Lallybroch).   

I watched the first episode on the computer and wasn't sure of I liked the actor playing Claire but when it was s on Sat.  I enjoyed the whole thing.  This production and story are so much a part of the scenery that a bigger screen is important.  (IMHO).  

What was your opinion?

I am a new Outlander fan, and I started reading the series because of the discussion on this board I'm currently reading Drums of Autumn.  It is truly the most engaging series I've read in years...I'm in love with everything about it!  Of course, I watched the first episode of the tv series, and I must say it was very good!  It looks authentic, and although some of the actors were not quite what I imagined, they will do just fine for this new fan I just want to say thank you to those who introduced me to Outlander; it is one of the few positive things I feel I'm taking away from my BC journey.  Where would I be without you all? 

Pre chemo appt today, bloodwork is good but my MO is not happy that the neuropathy in my feet has remained constant despite the dose decrease.  Down to 75% of the dose for Taxol tomorrow and then a week off.  If no improvement then chemo is OVER.  I feel weird.  I won't know if tomorrow is my last chemo until a few weeks after.  And of course I worry about not finishing but also that my feet will be half numb forever.  What a mix of emotions, I just feel like having a big cry about it (and I love that I don't have to explain that to any of you)  And as great as my timing seems to go, my best girlfriend moves 14 hours away Friday and tonight is the last time we see each other.  I should bring a whole box of kleenex.  

Comic relief:  Today as I was laying on the exam table and the nurse practitioner was doing the liver check thing, she was like "um, do you know you have panties in your pants?"  and I'm thinking "of course I am wearing panties!"  Then she shows me the pair of panties....  Early this morning I had grabbed my still sleeping daughter and tucked her in the car in her pjs.  She wears a pull up at night and I had grabbed a pair of underwear for her to put on at grandmas when she really woke up.  I didn't have pockets and my arms were full with her so I tucked them into my pants elastic at my hip and was planning on putting them in the diaper bag when I got to the car.  And that's where I totally forgot about them.  Until the nurse practitioner discovered them.  LOL  chemo brain!  SO glad she found them before my MO.  I would have turned a million shades of red.  He is according to my husband "hot"  and I would have been mortified.  hehe.    Couldn't stop giggling enough for her to actually check my liver for a few minutes.