April 2015 Chemo Crew... Starting in April? Please join us!

KBeee

Stephmoen, How are things?

Lynn, Down towards the bottom of the discussion groups there is a type of freecycle where people offer wigs and headwraps. Our hospital also has bins of donated ones. Ask about that. My daughter gave me an Under Armour hat for running for Christmas last year, well before knowledge of my recurrence. It is soft and has elastic inside which makes it fit closer to my head and not blow off. This is important since I have a tiny head. That is what I wear for my daily walks and sometimes to work when not on calls. I love it.

Alibeths, I am going for fluids tomorrow since my BP dropped so low last time. MO told me any other time I feel I want fluids to call him in the morning and he will schedule me for them the same day. He highly recommends going in for them a couple times and said it helps a lot.

thisizit, Sorry about the Taxotere reaction. Take advantage of that steroid high while you can before the crash hits!

Ferrovera, Welcome!!!!! So glad you've found us, but sorry you have to be here. In my Sept group, we had a gal from Australia, and 3 from Canada. I love hearing about the different treatments different places. I think side effects are similar no matter where you are. You've found a fabulous group of women to share this crazy journey with.

Raise me up, I hope you are feeling good. Good luck with the shave. If you can shave it silly first or have friends over, sometimes that helps make a dreary occasion more fun.

KSusan, I think things do get more challenging with time, but not always. I think the keys for me are walking every day...especially now that it is warmer out, and trying to keep as normal a routine as energy will allow. When I am just laying around on the couch, I can get depressed. I always feel better after a walk, even if I do not feel I have the energy for it. And if I have to lie down for a while, on these nice days, I try to pick a shady spot outside and do a crossword puzzle or something. Anything that distracts my mind from cancer. I worked for 6 hours this morning and the first time I thought of cancer was when my phone alarm went off for my Neulasta shot. That being said, we all have ups and downs and we are here for each other through it all. Some people just have a rougher time with side effects due to nothing they did or did not do. This is the place to vent. We get it. It helps venting here because once I've vented here, I typically feel much better and it keeps it from my family. Cancer takes away your control of so many things. I know my attitude is the one thing I can control, and staying as positive as I can really, really helps me through this crazy time. Though it seems time stands still, it is temporary. A May group has started. It seems like our April group just started. In that short amount of time, a June group will start and the first April gals (those doing 4 cycles) will be finishing, and we will cheer for each and every one as we finish this crazy phase.

Allicat, I will definitely try to watch ESPN tonight.

I had my 3rd AC yesterday. My chemo buddy (a friend I gave tons of advice to when diagnosed, and now in turn gave me lots of advice when I had a recurrence and started on her regimen...we scheduled our chemos at the same time) finished her 12th and final Taxol yesterday. It was such a happy day! I am feeling great so far and hoping it continues. I hope the IV fluids tomorrow prevent the BP plummeting I had last time. Wishign everyone a Wonderful Wednesday!!!!!

KBeee

LHF2080, Welcome to you!!!!! (I forgot in my last longwinded post, so I'll be more long winded) I'm sorry to hear AC has been harder than your previous regimen, but on the other hand, a lot of us are starting with AC, and you are bringing us hope that the Taxol portion will be easier. Keep us posted on how you are doing. What will be next for you after chemo? Do you have to do rads?

littleblueflowers

Anyone up for a hike next summer when we are all feeling strong again? This is Shangri La basin in Glacier National Park, where I work. It's a bit of a goat hike, but we'll worth it! I would love to take our whole group up there! We can do this....there is an end point. And if my tongue looks like my insides, chemo is doing a fabulous job of hunting and killing fast dividing cells! Does anyone know why they dose us multiple times at 2 or 3 week intervals? Does it have anything to do with cell division times? Hope everyone is hanging in there!

Stephmoen

my week in the hospital continues although I'm thinking and hopeful tonight is my last night..my blood and urine cultures came back neg my temp is down and my blood counts are up to 3.3 yay but I have had some diarrhea so one of the drs decided I need a c diff test done which takes a day to come back uggggh the nurse said she's 99.9% sure I don't have c diff but better safe than sorry I guess so everyone keep your fingers crossed I will be getting out of here tomorrow!!

Stephmoen

lovlilyn I believe my next infusion is still on track for next Thursday I get treatments every 3 weeks hopefully my wbc will be high enough then I get to start this fun cycle all over again 😞 hoping neulesta will keep me out of the hospital

My scalp has been hurting me all day and part of yesterday is this meaning my hair is gonna be gone soon how much time would I have? My wig is still being perfected for me

KBeee

littleblue, I would definitely be up for a hike there!

Stephmoen, So sorry you are there another night. I am glad all cultures were negative. When I was in for the same thing, my cultures were negative too. They told me that when your counts are so low, some people will get a fever just because of the normal bacteria in the gut and elsewhere!

StacyMc329

right before mine started falling out mine hurt too stephmoen. Day 17 for me. Then I clippered it. And that hurt too so shaved it completey the next day. Good luck:)

ksusan

My scalp still hurts and I still have a fair amount of tightly anchored hair. That said, it is falling, I just don't know if it will all fall, and I clipped it for tidiness. With a baseball cap on, I don't think my neighbors have notice either my short hair or that I no longer have breasts.

pegsurri

Hello Ladies,  I started chemo on April 8th and just finished my 2nd treatment of AC last week.  I'm also on the AC and Taxol treatment plan and will be having a double mastectomy four weeks after chemo is complete. 

Stephmoen, I have or had a lot of hair and my scalp started hurting but it didn't start coming out until day 15 or 16 after first treatment.  It started with a few hairs and then there were more and more so I had my girlfriend (who also had breast cancer 13 years ago) shave my head.  I couldn't stand seeing the hair everywhere and I knew it was going to get worse so I bit the bullet and did it.  When the hair started coming out, my scalp was a lot more tender than the week before and now I have relief from that pain because of the weight that was pulling on the hair follicles.  It's an adjustment but I feel that it means I'm just that much closer to the finish line and my family and friends have been wonderful. 

Kbee, your posts have helped my so much with every step of this journey.  I was so scared to start all of this and with all of the tests, things get mental.  I know what I'm dealing with now and will keep looking at this board for tips to help with these awful side effects. 

Thanks again to all of you and we ALL can get through this together!!  

This is a comparison picture that my 17 year old son did with me the day I shaved my head.  It's a hat with hair around the rim and I love it.  The regular wig, however, is going to take a little more adjustment time!

cherish333

Hi everyone..

I just started chemo AC today. I have 3 more cycles to go every 3 weeks. After that I will have Taxol CHEMO for 12 weeks and radiation for 6 weeks. I was suppose to have 8 cycles but my schedule changed due to me not being able to take the Nuelasta shot to bring up my white blood cells because I have the sickle cell trait.. I just got home and I feel regular. No pain, or nausea. Just going to relax.

SueH58

Hi guys. I had my first of 6 CMF treatments today. Waiting to see if/when the SEs will set in, and how severe they will be. I'm hopeful they will be minimal.

Sue

Alibeths

Does anyone else get FLUIDS? My BP was 87/71...: (

Steph--I HOPE YOU GO HOME SOON!! XO

Rpayton

Day 13 of my 1st chemo. Noticing the hairs dropping. Anybody know if there are symptoms to be worried about that would indicate your blood counts are down? Today I felt so fatigued, diarrhea after eating, little light headed, possibly nausea. Managed to put in 6 hours at work and I'm sure going to sleep well tonight.

Sending up a prayer for low side effects for everyone.

Renee

SueH58

Oh, forgot to post a pic from today.

slv58

Sue, I love your T shirt! I bet you got a lot of positive comments with that!

ThePrincess

I know it's really really really really really dumb but i'm still upset about my hair

littleblueflowers

I LOVE your t shirt, Sue!

Rpayton

Sue, love that shirt! I have a black bracelet given by my coworkers with F**** Cancer that I wear with my pink bracelet.

Rpayton

littleblue: what a beautiful pic! I'm jealous the view spectacular. I'm in flat Illinois staring at an empty cornfield right now. Thanks for sharing this photo!

littleblueflowers

It's not dumb at all, Princess! Our hair is such a big deal, culturally. I'm right there with you...plus, the shedding is so Damn prickly!

Kbee....OK let's do this hike! Come on everyone, join us! Next summer....

ksusan, people are so oblivious lol...sometimes I pretend I'm a spy and international woman of mystery when I go out in my wig and makeup..

Steph...how ya feelin , lady? I'm trying to come up with more hot nurse stories to cheer you up..but most of my other nurses are lovely ladies Lol...but there was the uncomfortably attractive radiologist who saved my life when he biopsied my breast...I was so high on ativan that I just watched them try to stab my tumor on the monitor and could only giggle and cheer him on like he was playing a video game...which made him Crack up....never Crack up a man who is stabbing you. Just a bad idea lol...

alibeths, what do you get fluids for? I am all about asking for something to help feel better!

Everyone else...giant hugs! I'm still feeling the burn as my insides slough off...anyone got a good non constipating home remedy for that? I got the meds, but I'm looking for a miricale.. (aren't we all)

Alibeths

They give you fluids when u r dehydrated...: ( My BP was so low from dehydration...

I AM COMING ON THAT HIKE...I am dying to fo to Montana...My hub said its amaze. Post more..

I am in South Flrida....We have palm trees, but that view is CRAZY!

littleblueflowers

sweet, alibeths! You will love it! After this treatment, hiking off trail will be a cake walk! I guess they won't give me any fluids..not dehydrated. Was hoping it would help with nausea!

Thanks, rpayton! I didn't take the photo, but I have climbed up there. The cool thing is the mountain goats hang out up there and their wool is stuck in all the trees. I illegally collected some for tying flies....

Positive_spirit

I have a crazy, funny, but good idea. My buddy wants to go bald with me. He is 30, I am 44 and we have known each other for 16 years. Our kids are the same age. So we were thinking that why go bald without a blast. We are going to video tape it, with our kids cutting our hair. And we are going to raise funds for a variety of charities, a low income woman that I know is struggling with cancer, and my daughter's classmate who lost her father to suicide. Two of my bald male friends will join us for some humor and have the kids paint the Breast cancer ribbon on their shiny spots. DH wants to go bald too, but we thought it might be too much for the kids.

And if we pull it off, we may raise some good amount of funds for charities that do great work in the world - Calcutta Kids, Inc works with pregnant women in the slums of India, Energia Fitness will help raise funds to provide cancer survivors and patients with personal training, CMAA a small non-profit in Lowell, MA works with the Cambodian refugee population.

I am so excited about the idea. We're scheduled for this Sunday. I can pull clumps out of my head, so I am hoping there is hair left to shave by Sunday.

Thinking of those of you who aren't having such a good week.

Positive_spirit

Littleblueflowers - that pic is gorgeous and I am really looking forward to such a hike. Will some of the rest of you join us. What a way to celebrate our achievements and THANK YOU for such an offer. I am all emotional over that! xxooxx

ThePrincess

PositiveSpirit - we just had a couple of people do a fundraiser for childhood cancer where their students got to shave their heads, it was a blast for everyone, good spirited fun and raised a bunch of money! GOOD FOR YOU GUYS!!

lovlilynne

Ohmygosh, all the new women - Cherish333, pegsurri, SueH58 - welcome, sorry you have to be here. We are a GREAT group of women who are getting through this together. We are numbering 59 now, of which we have at least 15-20 active members. I have a cheat sheet to which I've added your screen names, you can add more info if you want to share: https://docs.google.com/spreadsheets/d/1Goesf6x_13...

I am so thankful that I found this DB - I learned so much, and I was so well prepared for my first chemo experience, and now to the 2nd phase. I was just wondering if I'll make it to 5/5 with hair - I have big meeting at work. It sounds like it will be close, that will be day 15.

KB - thanks for the tip. I don't see a link, but I'll look around the site and see if I can find it.

Lynne

lovlilynne

Tina, my WBC was 2.6, and it had a "flag" of LL - the reference range was 3.8 - 10.8, so I'm more than 1 point under the lowest level of what they want it to be. She said the Neulasta probably hadn't hit it's peak yet, but I have to be careful, use common sense, and call them if I get any sickness symptoms. She said my neutrophil count was right at 1000, but I don't see that on the lab results, so I'm not sure where she was seeing that, but that is just at the lowest acceptable level too.

Lynne

lovlilynne

Lorraine, that fundraiser idea sounds awesome - what a way to put a positive spin on this.

Lynne

ThePrincess

What is the WBC people usually see when they do the next cycle of AC? How far back up does it usually come?

Rpayton

Ok not as spectacular as the mountains but we do have some beautiful rainbows in these IL cornfields.