September 2013 Chemo Group

Simplelife- I don't lOVE my MO either and called to get in with a new one - they will review my records and call to 'let me know' next week if I can see them!  wow...I was too tired to change during chemo as well.

hockeymom- must be nice to be so busy with kids - does it help you forget about you and all?

Babyruth- what a great experience of kindness from others!  Must've made your day!  You are amazing to get through this HELL 4 times!  You are UNREAL!!! You CAN do anything!

LHL- I'm sorry we are getting ports out....maybe you should ask why and get yours out too!! They are annoying...mine has been on a nerve since it went in and VERY annoying!  How long til counts normal out? Did they say??

KJ- The drains are AWFUL I don't blame you..!!! They will come out...don't worry...patience...ha!  Easier said than done! Tantrum away!

Kbee-  I hope your hair zooms in quickly with the nioxin! Mine is weird, about 1/2 inch on top and 1/4 on sides but still bald through....I have read that might fall out and new come in?  It sure isn't full at all...Maybe I will buy nioxin too...I do miss hair.

I still have beet red hot painful feet and cannot wait til that goes away!  Haven't worn shoes in 2 weeks, did wear ugg boots but they hurt them too and they are the loosest....

Question for you that are done!  How long do you continue the Prilosec or stomach meds?  How do you know the stomach is better or ready?  I am scared of going off and waking up with severe stomach pain that started the meds need in first place....

I'm 2 weeks post today...

AND I LOVE hot sauces, jalepenos,etc...and haven't had ANY this whole time, have you had those yet or when can you try???

Betterday- so happy to hear you are doing better. I think about everyone  on here daily and hope you are better every day. AC was horrible to me also. It made me feel as I was giving up. Now I am doing rads and feel so much better. It's even easy to laugh. Hugs.

Simplelife,
I didn't feel a thing with the tattoos, even though she used a needle.  I was very shocked at that.  The whole procedure to mark me up, do the CT, and do the tattoos was uncomfortable (fully exposed on a skinny table, being asked to lay very still), but doable.

FYI, Surgery is a cakewalk compared to chemo.  You got this!

Betterday,
I had a bmx and my surgeon didn't run into problems with my port.  That seems kinda strange unless your cancer is located near your port.  Usually when they place a port they are strategic to locate it on the side furthest from cancer.  My surgeon prefers to put them on the left side (don't know why. but that is what someone told me), but since that was my cancer side, she put it on the right).

Glad you are feeling better and better.  I didn't realize how much chemo had affected me until it was done and I was detoxing from it.  Grateful for the work chemo did, but so grateful to be done now.

Audra,
I felt better after the "tantrum", thanks.  :-) 
As for the Prilosec, I stopped taking it about 10 days after my last chemo.  Feels good to burp again.  ;-)

I also am eating spicier foods now.  It tastes so good!  Go for it!!  Wake up those post-chemo taste buds!!

KBee,
The earliest I will get the two right drains out, now, is on Monday.  Uggh!!

Anyone have suggestions for the best radiation burn prevention cream? 

Alfranco,
Thanks.  The RO's office suggested miaderm and emu oil.  They also said Aloe Vera and Aquafur.  Have you heard of something that is sulfer based?

YAY, Warrior70!!!

wow so many posts! 

Betterday, my thoughts are with you and  i concur with alfranco that last AC did a number on me also physically and mentally. I'm glad your attitude is back to fight. Like i say. "Bring it on cancer you messed with the wrong bitch". Never surrender.......

Wishing everyone the best thru rough times and good. 

Warrior congrats thought about you all day!  If i had more energy i would do a happy dance for you. Ahhhh maybe tommorrow.  

Congrats warrior!

The AC made me down too - I read some stuff I wrote in my journal last week and don't even remember feeling so bad!

LHL - do you think your port staying in has to do with being BRCA+?  I think part of my anxiety about getting mine out is that I still don't have the test result.  My insurance has denied it twice (once for lack of genetic counseling, which I did) and then for medical necessity.  Last week I sent in another appeal with letters from all 3 docs (RO, MO, SO) stating their opinions on medical necessity.  I feel a little better that one of my great aunts with BC (and 2 daughters with BC) tested negative in Dec.  They actually tested her for 15 different cancer markers and she was negative for all.  Her mother died from BC and her son died from brain cancer.  But I still want my freaking test done!  Ok, that's my tantrum of the day.

I feel like I'm on a ticking clock with surgery Monday - again like when pregnant.  Chemo was like daily not knowing what to expect like pregnancy, and now this is like your due date is looming and even though you know it's gonna suck, you want it to hurry up and get here!

Congratulations Warrior70! It's such a great feeling!

Hello everyone, I have been away on leave for more than a month. I have been thinking of you all. Just wanted to report that I had my last TCH on 11/26/13, left on a whirlwind trip on 12/26 and returned on 1/28/14. This involved six countries, 13 flights, 4 of them long haul, the longest being 14.5 hours. And I SURVIVED!!!

I had herceptin a week before I left and have just had my 6 of 17 today. Yes I was tired and exhausted, with 54 other fellow travellers, all getting the flu, being in the same space for 30 over days, worrying about lymphodema and I SURVIVED!!!

I returned to my teaching job the day after the 14.5 hour flight, decided to go to school with no hat or wig-topless- and I SURVIVED!!!

Whatever happens after this in the future, I know to stop worrying and to live life NOW. There is life after all this shit. I have ticked off many things on my bucket list. I have even done the rides at Disney and Universal and my heart has gone on ticking...I love LIFE!!!

Take care all my fellow sisters and hang in there. Huge hugs....

Viji!  Love the pictures!  What an adventure!  Your hair looks great!  Congratulations on SURVIVING it all!

I actually had enough energy to stay pretty active almost all day yesterday, 16 days pfc. I really think my blood cell counts must be getting back to normal. I was able to do the elliptical at a reasonable pace without my heart rate sky rocketing in the first 3 minutes. I did lots of easy cleaning around the house just to keep moving and even went to the grocery store and Lowes with my husband. None of that would have been even remotely possible 3 or 4 days ago.

I have an unusual situation with my upcoming surgery that has caused me to have a lot of questions about what I want to do. I have subpectoral implants from a surgery thirty years ago that I think will cause problems with the radiation I need. I had messaged the radiation oncologist my questions and she called me yesterday. I haven't met her yet, but she seems really nice and helpful. I'm going to go in and see her next week. The old implants are coming out for sure (they are ruptured) , I just can't decide if I want to fool with having new ones put back in. That's currently the plan, but I think I'm just going to get the old ones taken out and not replaced. I don't want to have to deal with potential future surgeries over the next few years. (Radiation can cause painful contracture of the implant capsule.) I also want to make sure the radiologist is able to create the radiation field I need. It will be interesting to see what the radiation oncologist says when I see her next week.

Lighthouse, speaking of being jealous, I'm a little jealous of all the people that have targeted therapies that are available to them.  With triple negative BC, I'd give my eye teeth to have something like that available for me.  

Kbee, I've heard of other people having dark hair with white tips when it starts growing out.  You could just pretend you are going for a punk look!  Actually, it will be easy for a hairdress to just cut the white tips off when you are ready.   When the hair is two different colors like that, it's easy to cut  right to the change in color line.

Audra, I asked the question about Prilosec to my MO when I had my last infusion (which was AC).  She said to take it for two weeks pfc and then try to stop taking it and see how I do.  If I had a problem, just go back on it and try again later.  I stopped it a couple days ago, right at 2 weeks pfc and haven't had any problems.  I'm sorry you are  having such big problems with your feet.  Hopefully, the neuropathy with decrease soon.  That sounds really painful.

Betterday, I'm so glad they are taking out your port since it's giving you problems.  I'm surprised how quickly I'm bouncing back from AC too.  Doesn't it feel good  not feel horrible any more?   The steroid crashes from Taxol took me to horribly dark places each and every week so I know what you mean about all that. Those crashes were really a nightmare for me mentally.  After about 8 episodes of crashing,  I posted  about it here, I realized from others that I wasn't alone.  I  asked my MO for something to help me through them.  She prescribed ativan.  I called the ativan my "crybaby pills" and my husband would give me one whenever he found me  on the floor sobbing my eyes out.  He would help me into bed and rub my back (which helped as much as the pills) and I would fall asleep.  With AC it wasn't quite as bad for me.  I told my husband it was because the AC made me feel so low to start out with that there was no place lower to go when the steroids wore off.  Even so, I needed a few crybaby pills to get through AC as well.  I'm so glad you are back to feeling positive and optimistic.  You strike me as a person that is quite a fighter and I think it will serve you well you move forward with your treatments.  I really like that you are getting both gemzar and cisplatin.  Both are used a lot with TNBC and I think the combination is an awesome choice to kick any cancer cells in the rest of your body to the curb.  There are some good studies about the combination of gemzar and platinum chemo passing the blood-brain barrier.  Any cancer cells in your body after surgery don't stand a chance!

Clickchick, I'm wishing you the best with your surgery on the 21st.  I hope you get good results with your lymph node pathology. My MO told me I had to get radiation all my nodal areas because I was clinically node positive at the time of my diagnosis.  I'm not happy about it, but I want to do whatever it takes to give myself the best chance possible.  Taxol gave me a really itchy rash too...mostly on the chest.  It seemed to "eat" my freckles and sunspots all over so my skin was a mess.  The cool thing is that some of my sunspots seems to be completely gone now. 

KJ, thanks for the info on the tattoos.  Good to know it doesn't hurt. I get cold just thinking about having to lie on the table without being covered. brrrr!  My port was on my right because my cancer was on the left too. 

Warrior,  Whoo HOO!!!!! Doesn't it feel good to be done with chemo?  Congratulations!!!

SpecialK, thanks for the skin info.  I cut and pasted it into a document to keep to talk with the RO about.  I really appreciate that.

Knightzoo, we're all in your pocket on Monday.  I'm wishing you the best. Yesterday,  I was thinking about how knowing so far in advance that a surgery I don't particuarly want is coming is odd.  Almost every other surgery I've had has been emergency surgery that I didn't have much time to think about and I was in so much pain I really wanted it.  This one is different.  I've known it was coming for almost six months.  You are right, it is kind of like being pregnant and knowing labor is coming. 

Viji, thanks for the pics and the upbeat report.  Good reminder there is a life to be lived out there when each of us is feeling up to it. 

Stay warm!

Viji- That was super inspiring and hopeful....cannot wait!!!

Knightzoo-  You will do great with surgery!  it is MUCH easier than chemo!!!! I'm sure they will give you what you need....and lots of pillows at home - it helps to sleep upright the first few days with pillows under your arms...they also gave me lanyard type thing to go around neck to hook drains to when you shower...have your husband get instructions and exercises as you will have residual drugs and may not remember what they say...

Warrior  HORRRRRRAY!!!!  So happy you are done!  YES!!!!!

simplelife- I quit my Prilosec last night and then had pepperoni pizza....woke up in night with stomach issues....maybe the two combined wasn't good??  I am staying off of it though and will see what today brings...

Happy with just taking Ativan to sleep and down to just one med....YES!!  VERY happy with sleeping at all, this is great!

Lots of positive vibes coming from this board.  So awesome. Congrats, Warrior!  Viji, phenomenal post and trip.  And thanks for sharing the pictures.  LHL, thanks so much for the hospital packing tips.  Anyone else have anything to add?  Knightzoo, good luck Monday.  We all will be thinking about you.  Simplelife, happy to hear you're continuing to bounce back.  KJ, hang in there with those drains. They will be out soon! 

So, saw the "tube" referenced in LHL's post.  I gather that means a breathing tube.  Not sure why it never dawned on me that there would be one during surgery.  I've never had surgery before where I was totally under. I assume you are not awake when they put it in and take it out? 

Betterday - I was not awake when they did the tube (either in or out).  In fact, I don't even remember them wheeling me out of the prep room, so they must've given me the good stuff early.  LOL   When I had my port surgery I can remember being wheeled into the operating room.  Not this time.  One minute I was talking to my hubby and the next I was waking up in recovery 9 hours later.    And I didn't really have a sore throat from the tube... my voice was just scratchy for a day or two.

Oh, and YES to the warm socks.  They give you some with the little sticky things on the bottom so you don't slip, but I loved my fuzzy ones from home!

Warrior, hope you feel better and better each day!!! 

Viji, Awesome pictures!!!!

As for the breathing tube, you are asleep when they intubate you.  When they found out I was a paramedic, the anesthesiologist offered to numb my throat and let me intubate myself, but I politely declined and told him he could do the honors.       

I hope everyone has a great weekend.  Tomorrow is an all day swim meet, and then we head straight to Omaha for a gymnastics meet........busy, busy, busy.  Post op appointment went well.  He is pleased with healing.