September 2013 Chemo Group

Mamastewart - Thank for letting me know about the brands of crackers without soy. I was beginning to believe I would not find one.

I dont have a headache but have heartburn. Probably the coffee - even though it doesnt taste as good - I am afraid if I dont keep up my normal level I will get caffiene headaches. I plan to try reducing intake slowly to try to prevent them. I feel for you mamastewart and LHL because headaches are the worse especially when they last for days and intensify. I hope that your headaches subside so you get relief real soon. I will keep you both in my thoughts and prayers. Hang in there! 

Pam358 - Thanks for the info on caring bridge! Very helpful to know someone that has used it. What security level did you choose? Also how did you inform people about the site?

 Sminns - Yes my mo told me that there are two different treatment plans to choose from and she recommended the TCH. I agree with Kbee - it appears to be regional. 

Diane49 - Oh girl - I am so sorry to hear that you are feeling so bad. JellyK has very good tips....hope that something works for you very soon....Hang in there! I will keep you in my thoughts and prayers. Keep thinking tomorrow will be a better day!

Good night 

Traci

Hi Traci

Thanks so much. I wanted to ask if we could start a group meditation at a certain time each day? It can be 10 mins and at a time when people can drop in when they can. I did this with my sisters with visualization and it was amazing. I felt so strong knowing that we were connected. A good visualization is seeing ourselves how we would like to be and feel both during and after chemo. Let me know your thoughts and I could work on a time that may suit everyone,

Thank you

K

Traci - I did the highest level because I work at a school with high school students and I didn't want them to be able to access the information but that level does seem a bit cumbersome at first.

You enter in all the email addresses you want to authorize and then those people can register with the website and put in your name and get to your site. They have the option on the website for you to email invitations to people and I did some of those and I also sent out an email from my home account to some people after I put their addresses in. There is an option to have people enter in a password you set up as well but I didn't go that far. There is also an option for the website to email you asking if someone who is not on the list can be added. I didn't want to keep posting things on Facebook. For one, not everyone is on Facebook but also I think everyone has stuff they are dealing with, they don't need to read about my cancer all the time. However, many people do want to know and this way they have a choice about when they read the journal entries. I also put it out to my friends and family - "I've got this Caring Bridge site, let me know if you want access" so they had the option. I've heard nothing but great things from family & friends about having the info without having to bug me. You can also make other people authors on your site so if you don't feel up to posting updates they could do it as well.

I've known two other people who have used it successfully as well.

Traci I use CaringBridge too - I have the highest security without forcing people to put in a password I create.  I have an ex mother-in-law who likes to troll the internet for things I post and then post her own opinions (never positive) on them, so I couldn't afford to have her on there.  There's a place you can see who has registered too, so you'll know who is reading it.  If you can't find it let me know and I'll figure out exactly where that is.

Batcatlady I'm right around the same as you - I haven't noticed any bald patches...ahem, anywhere, but it's itchy and feels weird in the downstairs region, definitely.  I too have long hair (on my head, lol) and haven't been able to get myself to cut it.  My sister is getting married on the 21st, and I have this weird denial that what if I didn't lose my hair by then, I'd be sick and pissed off if I'd cut it too early.  Crazy I know, this next treatment tomorrow should pretty much seal the deal, but I can't cut it yet.

Treatment #2 is tomorrow.  My list of I-don't-wanna's is getting daunting, so I've started focusing on the I-wanna's, lol.  I wanna feel better this round.  I wanna slide gracefully into baldness.  I wanna appreciate this time off of work.  I wanna win the lottery...

My Oc explained ACT as the east coast treatment & TCH as the west coast treatment. ACT has been around longer and dr explained their could be some serious SE long term. Of course since Im in Hawaii my military & cilvian dr both recommended TCH to avoid the long term side effects associated with ACT

Ekaterina I use meditation and visualization let me know the time & I'll participate

JellyK - you make me laugh.  

I'm using cold caps so I'm hoping I don't lose most of my hair, but I did order a wig just in case.  It came yesterday and I'm pretty surprised.  I have shoulder-length, layered, naturaly curly hair that pretty much has its own style.  I had no clue a wig I ordered online could even closely resemble my crazy mop, but it does!  It's a little darker than my hair - more like my natural color than the highlights I have now - but it's close.  I thought I was happy about that, but then I woke up from a horrible dream about wearing my wig.  LOL  So I guess I'm not as prepared as I thought.  Hmph.

Stupid cancer.

I'm going to try what is not true fasting but eating lightly (500 calories) the two days before and one day after. Have you looked at the threads on fasting here on breastcancer.org? Lots of good information. Will let you know.

Lighthouselady: I think mine is a combo of things too. I did quit caffeine cold turkey, as soon as I found out. I just didn't want to put potentially bad things into my body anymore. Now not so much lol, I will eat/drink whatever I can. I still have a headache. I think it is migraine status, but I haven't taken anything much at all for several days other than Ibuprofen, Lortab and Clairitin.  I am thinking I am getting sick too. My two littles are both sick and I am taking one to the doc today because he was up with sore ears last night. My chest kind of hurts and it is different from the rib pain I was having. I don't' know if I should try to get into the doc too or just wait until tomorrow when I already have an appointment. 

Does anyone know the dates that your immunity is lowest? I would like to start getting my kids out and about to playgroups and stuff but want to avoid those days...as well as the grocery store, the doctors office, EVERYWHERE! I can't get sick during this. I just can't. 

mamastewart - we must be kindred spirits.  I have a scratchy throat that I'm choosing to ignore.  I WILL NOT GET SICK!!!!!!!!!!   I've been told that days 7-10 are the lowest as far as our immunity goes.  For me that would be about right, because my ER visit was day 9 and my WBC count was very low.

I just found out this morning that I need to start chemo asap, next week. I was scheduled to have more work done, another surgery on Monday 16th, to clean up margins from my Aug 29th lumpectomy. But the team met this morning, & said chemo can't wait. And I will be having a mastectomy after. Then another round of chemo.

I had 14 lymph nodes removed, two tested positive. The mas (6 oclock) had two extensions, one a lymph node, one unknown but cancerous. Because I have *petite* breasts the mass was in the chest wall & also very close to the skin on top.

So the plan of action has changed. I feel numb.

Hopefully I will get an appointment with the oncologist tomorrow, so I have some clue about what the treatment will be.

Alfranco...same thing happened to me...sugar is just too sweet the only thing tasting normal is milk and water.  I bought some juice and I am going to try and dilute it with water to see if that helps.  Sorry you are not feeling well...I am on day 7.  Blessings back at you!

Hello all.  Newbie here.  I start my chemo Friday, the 13th.  Lovewins..you crack me up!  Of course chin hairs would most likely be the LAST thing every woman loses.  That and leg hair.  Why make it easy?  Have to have a sense of humor about it. 

Anyone able to give me an idea about when you begin to lose your hair on TCH?  I have an appointment on the 20th to get it either cut/shaved and fit for a wig.  Figured, this is one thing I am able to control...do it while it is my idea.    Can't imagine I am a wig person (hate hats) but I work in sales so think it is better than sitting across the table from a client staring at my shiny noggin. 

Any advise anyone is willing to offer is greatly appreciated.  Am hoping to work through this whole ordeal.  So far so good. 

Solnitsa - I polled ppl on the thread for my chemo & found that hair loss tended to happen between day 12-16 after 1st chemo. I think there's a THC thread, so check there, each chemo's a little different & it's really helpful to find the ladies who're on the same one But it does seem like the progression of what falls out first is the same -- pubes, head, everything else, then brows/lashes last, that can even go as late as after the last round of chemo if they go at all.

Julia2 - Yeah, I agree, seems like hair is the least of it all. I'm just on the 1st round & the other stuff has been SO much worse. Hair starting to go is weird & kind of funny, but not as emotionally traumatic for me as not being able to go back to work.

Thank you both for your comments.  I am so glad I am able to work.  I would make myself absolutely crazy if i had to just sit and wait for things to happen.  Work and my kids are helping to keep me sane.  I agree...hair loss is the least of my worries.  I am a little freaked out though about all of the possible side effects of the TCH.  I don't like something being put into my body and then just "wait and see" what happens.  Probably the biggest reason I survived the 70's!