Starting chemo November 2012

Keetmom~I'm so sorry you're going through this again. I can't even imagine how difficult it has to be! I'm surprised the steroids don't help. I pray you get real relief today.



Monstermum~I've never heard of the chemo leaking out. Wow! That's way scary!

I'm sorry you've had to go through all that. I'm so glad I have a power-port.

I can tell you, many of us have had the gum tenderness. I asked that exact question last week. I realized too, that I hadn't been as faithful as before in rinsing my mouth with the salt/baking soda mixture.



When my Jesse (age24) was little, we used to play a game where I'd chase him in slow speed, hunched over, making faces, and in a very funny but scary voice say MONSTERMAMA. To this day, he still from time to time, calls me monstermama.



Blessings

Paula

I've been off the boards a while so much to catch up on! 

Keetmom - hope you're feeling better.

Luvbugs - glad to see you're doing better.

Loafer - would love to be in your shoes and starting rads.

Michelle - how did the appointment go?

Me- I have but one word - FATIGUE!!!! Can't hardly do anything without feeling like I need to take a deep breath to get in more oxygen.  Nurse said it's the Taxotere but I might be getting anemic, too.  Also told me to get ready because it will get worse on Friday after round 4.  I was tired some after round two but nothing like this.  Might be going on disability because even working from home is exhausting me. 

I'm a happy camper tonite!! Finished my last chemo today, round #4 (guess the SE's will last longer) nonetheless, the infusion team made my day special, when I was finished they all came in singing, dancing and shaking maraca's, then they presented me with a certificate of chemo completion - what a great way to end the treatment.

Monstermum glad you got the port, it's no fun but it sure makes things easier - you know you can get your blood draws from it, saves a lot of wear and tear on those poor veins...I have to leave my port in until after I finish radiation = anyone else?

Junebug I think you should have been on disablity already - snap to it girl, you earned the right!!!! Hope you feel better soon, I'm not looking forward to the SE's but we will all get through it - we always do..

Everyone else, I can't scroll back to far so hope everyone is doing well, chat soon, sweet dreams girls.  Love you

5luvbugs - congrats!! while we all know you have weeks to go before the fatigue and yucks wear off, this is a mile-stone!! And I LOVE the fact the nurses celebrated. I had my last one today in Singapore, and they were cheerful, but there was no dancing or singing. And they put a woman beside me who was being treated for a recurrence five years out from TC. So a slight damper. I know it happens, it could be me, and she will be fine, but it was a damper. 

Monstermom - welcome, and that leak sounded awful. I had read about that before starting chemo and so am curious. How bad did the burning get? Was it mild? Could you tell it was leaking? I had some burning today - shortlived and mild and figured it was nothing. Now you have me worried - I fly out of the country tomorrow and have enough paranoia in me I can see this worrying me... But you said it was rare, so I am just letting my imagination run wild after your description and the comment about yelling if there is burning:)

Anyone interested in reading the results of a UK study on the effectiveness of a short (3 wk) radation therapy can find it on this link: www.medconnect.com.sg/tabid/92...   The study basically confirms that for up to 10 years, the survival and recurrence rates are the same for 3 weeks as for 5 weeks (no boosters included in the study, so if you get them, you are getting 3 plus 1.5 OR 5 plus 1.5). I was told today by my ONC in Singapore, it isn't 15 over 3 weeks here, but rather 18 over 3.5, so I am looking at 18 plus 8, or 25 plus 8. A one week difference. Still very confused as to what to choose. 

Loafer - how's that research going?? 

The burning was pretty mild but I could feel it kind of branching out....not just in the vein. It also left a slight reddenned area very quickly which is what sprung my nurse into action. I had slight burning at my first injection but the put a warm cloth on it and it went away. She knew by my description of the pain that this was different. Glad she was on the ball. It's way scarier after I looked it up! The antidote drug page says "Prepare for the worst, hope for the best"....Yikes! leave it to me to get one of the rarest side effects. Hope that means I've been pre-didastered as I've still got over a year of injections ahead! (herceptin plus clinical trial drug)

Omg monster! I hope u r better! What a nightmare....



LeeA thx for that - and we r on the same schedule.



Keet- not again! Sleepytime.

Politico, glad im not alone with the kid anxiety but sorry about yours. Hate to think that helped cause this....



Tricia - How did it go yesterday? Maybe to a Do Not Disturb sign?



Does anyone know if the taste bud loss is related to the whitening tongue?



Help! My editor just sent my novel back for final edits before it goes to press and it's so hard to resist -- but i dont trust myself to do it yet, need to wait until chemo fog lifts....so it will be rushed, last minute but i dont want to sound weak or do it poorly when ive worked on this book for so many years.... Pls slap my hand and assure me that fog will lift in time....

Milkyway - I'm often lightheaded after Day 4... sometimes it takes me close to 5 minutes to gradually work my way up from a seated or laying position to standing.  I have low blood pressure to begin with and sometimes experience orthostatic dizziness so I just assumed that the more pronounced lightheadedness was related to the loss in blood volume that coincides with chemo. My explanation seems to fit with when blood volume would be lowest.  

monstermum - wowsers.  That's what everyone warns us about.  Must have been scary, but I'm glad to hear that you seem to be doing okay now.  

Marian - Almost there!  

Well, I'm supposed to have AC #4 on Friday, but when I reviewed my SEs with my oncologist she suggested that I'm on the more severe end of what people experience and that I likely have gotten as much good out of the 3 full doses that I need (not that 4 isn't good, but considering my pathology she thinks 3 will suffice).  I will admit that 2 days ago I had seriously considered not continuing with the AC because I was still incredibly nauseated and feeling the most intense head pain (not so much a headache, but rather, it feels as though there's a fire inside my head and my brain is melting away).  I thought there was no way I could live like this forever and thought that if it was still like this come Friday that I would cancel (I feared permanent damage).  But, of course, today the head pain has subsided so I didn't ask for the AC to be cancelled. It was just when we reviewed all my SEs that she spoke up and suggested that we back off... if I want, of course.  I have a day to decide, but it's still a difficult choice.  I'm torn over what is best for my overall health.  I'm not looking for advice (my onc presented me with the stats from research)... I just wanted to vent over having to make this decision.  So many freakin' unknowns with cancer treatment that it makes decision sometimes so painful to make.  

Sneaky, crazy S/E and glad that Karen has given you all the info. It seems that A/C has not been kind to you. I have found the Taxol way easier and have my old energy back and counts good which not doubt helps with the energy. On to healing for surgery and I did like Dr. Lennox!

My gut tells me to drop the last round of AC.  Not because the SEs are hard (even though it sucks, I know I can get through it if it's temporary), but because I feel like I'm doing more harm than good.  And even the timing of having 1 less round works out better with plans I had made with my daughter so I almost feel like that's a sign (flakey, I know).  But there's just that little voice over my shoulder that says, "what if it comes back?"  stupid voice. 

Marian - It actually was a locum, Dr. Lohrish (sp?).  That's part of why I'm not immediately deciding on dropping on the AC.  I'd really like to talk to Gelmon because I know she's so well versed in the literature.  I know for sure that's she'll have all the latest numbers available for me to help with my decision.  I'm sending her an email tonight but don't expect to hear back.  

Anamerty - If I went through what you did I wouldn't have a doubt about dropping the last round. Screw the stats... it's already known that the risks are too great for you!

monster, sneaky, anamerty - you ladies have been thru so much! Sending hugs!!

milkyway I feel the same way. I sometimes wish they wouldn't tell us BRAC positive women the percentages so we wouldn't have to worry so much.



I'm still suffering from fatigue. Had CT scan today as I sometimes get winded just sitting. Nurse said it's the taxotere and it will get worse with round four. Not expecting to be able to get off the couch at this rate.

Also found out my sister is BRAC positive too.

Oh sneaky and anamerty and milky and --- my tears are not from taxotere tonight. I cannot imagine having to make such decisions and bearing such pain. You are so strong and deserving of an easier load.

When my onc suggested lowering one of my drugs for round 5 &6 i thought wtf - why isn't this an exact science, why is it like gambling?

Life is so random. I agree with tx & milky - a little knowledge can be a scary thing.

I can barely stand tonight, food tastes like dirt and im back to Hallmark movies -- but imagining 5 luvbugs' maraca celebration.



Anyone could be hit by a car tomorrow yet we are fighting to live and live well.

Oh let us celebrate every moment -with maracas!

Congratulations 5luvbugs!  Oh how wonderful it would be to wiggle the nose I Dream of Jeannie style and say those words!

Radiation. I live in the Netherlands. The protocol four years ago said 6,5 weeks. This time around I had lumpectomy and then 4.5 weeks of radiation. They didn't ask me, they didn't suggest it, they just did it. The first week was boost. But I have to say that this time, no itching, the skin survived quite well, mild burning.

All of you who are afraid of the radiation, trust me, after chemo, the rads is a walk in the park.

Girls with the white tongue and bad taste, don't forget to use the 2 tbsp bakings soda /1 liter water rinse- keep it in the fridge, it helps. 

Sick of Pink, here I am giving you that assurance you need to edit that book (after all I ordered it and can't wait to read it)  can you give it a few days until the fog lifts.  Can anyone help you, I know it's sooo hard to concentrate, especially if I'm standing beside you shaking maracca's and singing and dancing the happy dance but you can do it girl, I know you can.

Paula this is my favorite thread also - we belong here!!!