August 2013 Chemo Sisters

SewStrong

gavinsgrandmother, I am taking taxotere/cytoxan and I haven't had neuropathy or any tingling of my hands or feet at all. I have had two infusions. Of course, we're all different, so I guess we each just have to see what it does to each of us. My main SE is the pain from the neulasta shot. It was severe this last time and lasted about 7 days. I had to take percocet.

Mankatostate, My head is itchy. I didn't shave it, I just let the hair fall out and cut it about 1" long when I was sure it was going. I didn't want to shave it because I thought it might feel like sleeping on whiskers. I don't have red bumps. That probably is from shaving. Your poor little head isn't used to that sharp razor blade.

mankatostate

Well when I say shaved I had my head, I  buzzed it as far as it will go with the clippers...so I have little hairs left on my head like wiskers. Yes it is very uncomfortable sleeping on it. My husband thinks it's like ingrown hairs, but as far as I know I don't have anymore hair growing so I wouldn't think it was that. It's also going down the left back side of my neck. I just wondered if anyone knew what to do. I have been washing with Aveeno baby shampoo...but maybe I need to put something on it...just not sure what. I will ask on Tuesday when I go in for my next chemo. I can't believe it's almost time for that again. This second round went so much faster than the first time.

ForMyGranddaughter

mankatostate, my head itches on + off.  Which palm is itching?  Doesn't a itchy right hand mean receiving $$$ + an itchy left hand mean a loss of money.  If I'm correct, I sure you have an itchy right hand!!!

Last night I had a great night's sleep.

Today I met a fellow August Chemo Sister at the Look Good...Feel Better Workshop.  We had a wonderful time, received great makeup (Gucci, Dior, Chanel, Merle Norman, Clinique, Revlon, Mary Kay, Avon), had a full make-up class (including cleansing + moisturizing), drawing eyebrows + creating the illusion of lashes.  A great time was had by all.  A few of us exchanged email addresses.

We are planning to go to a FREE bed + breakfast for cancer patients through Saint Barnabas Hospital.  We can take yoga, meditation, an oncology massage + more!  I just requested a weekend stay.  I AM excited!!!

I am also vendoring tomorrow at our Women's Fellowship Ministry Luncheon.

Make it a great weekend.

mankatostate

FMGD- shoot it's my left hand. :-)

Moderators

FMGD, it sounds as though you both had a great experience at the Look Good...Feel Better workshop. More info about their program, and other resources, from this link on the main Breastcancer.org site. Let us know how the B&B for patients goes too - maybe it's another kind of resource that could be added to the main site.

• The Mods

LanaM

Ashley410 - I'm doing 4TDD (after 4AC-DD) today was #2. With #1 I had no issues with the treatment itself.as far as SE's days 3-5 I did have some bone/muscle pain and more fatigue than normal, but it eventually got better (I only missed 1 day of work). At today's trtmt in the first 5-10 min. Of T I had a pretty serious allergic reaction - chest pain and tightness, trouble breathing, red hot face that felt like it was swelling, and back spasms. I was a little scared but my nurse was great - she immediately stopped T and gave me more dex and more Benadryl, called for help & called respiratory/cardiac who gave me an albuteral trtmt & put me on oxygen. Everything settled down & nurse talked to onco who gave ok to keep going at slower drip rate and I had no problems from there. I think my onco had me on a lower than normal of dex due to my type 2 diabetes - he's upping the dex and I'm thinking that will help with my final two trtmts, and if necessary I'm sure they'll slow the drip. I'm Triple negative so I understand the more aggressive trtmt plan (DD) is recommended. Lana

naan1004

Ashly, I did weekly and was so much easier to tolerate, but ended up with pain in feet and legs, good news no nausea! Weekly I'd weaker dose so easier to handle side effects.

LisaSp

Mankatostate: That rash was one to watch out for with Taxotere -- could be hand, foot mouth disease,a viral infection young kids get or possibly an allergic rash from the Taxotere. The bumps on your head could be signs of either one of these or possibly cradle cap, which unfortunately is possible for any of us to get.



If I were you, I'd call my MO tomorrow to ask what you need to do for both.



Julie: Great to see you here again! Sorry you've had such difficulties; I hope things are better from now on.



I am vastly improved now I've had my 5 days of Zithromax. I must definitely had some bacterial infection that was stopped by the antibiotic. I'll have my break week in between before my last round of chemo. Hallelujah!



Hope everyone has a blissful, SE-free weekend.

Ashley410

Lana I'm sorry to hear about your bad experience with your 2nd treatment! I had something like that without the chest pain happen to me during my first A/C treatment and they give me Benadryl every treatment and drip some things much slower as well! I hope all goes well for you for the last 2 treatments!

tonya845

Good luck Ashley410 with taxol...I will also be doing the 4x taxol starting 10/16. I hope you do well with it. Keep us posted.

mankatostate

Lisa-thanks for the suggestions. I decided last night I probably should call.However no one is there on the weekends. Wondering if it's really an ER call. I have had it for a few days already so I am thinking it can wait until Monday...at least that is what I hope.

ForMyGranddaughter

I hope everyone is doing well. 

mankatostate, have you had the Neulasta shot after chemo? 

It could give you pain in your larger bones.  With my first shot, my entire spine hurt (from my neck to my tailbone) and also my hips + down the front of my chest.

Anonymous

Has anyone developed a cold?  What have yor doctors prescribed if anything?

RhodyMMM

Mankatostate, I also shaved my head when the hair started falling out (we had buzzed it short a few days in advance). We shaved it down with the clippers but there were still stubbies so I used the electric razor I bought after my mastectomy and node dissections. That helped because it clipped it right to the scalp.  Not so itchy now.I also bought fine thread pillow cases (couldn't find satin ones nearby but got 600-count Egyptian cotton at WalMart). And a sleep cap. That helps alot at night, although the night sweats make me take the cap off during the night. I use Aveeno Oatmeal body wash. The man who sold me my wig suggested some special scalp shampoo that costs $19.00/bottle...I am going to try to avoid that. I am going to the LGFB class this afternoon and will ask for suggestions then too.

Day 3/4 after second round of A/C. They did give me Neulasta this time since I ended up severely neutropenic and in the hospital after round one. A little bit of low back pain this morning, took the Claritin and will take some Motrin as soon as I eat something. A beautiful day here in western Pennsylvania, but taking it easy today because I was SO tired yesterday, and back to work tomorrow!

Wishing you all well today and this week!

Martha

LisaSp

Mankatostate : Your MOs office doesn't have an on-call doc for off hours? If so call that number, they may tell you to wait tomorrow but there's no harm in asking what to do.



Martha: Very glad you got the Neulasta this time.



Well, I am looking forward to my final T/C on Oct. 7. Hopefully, it won't hit too hard. Being done will be great.



Looks as though most of my hair is going slowly. No underarm, nether regions, less and less on scalp, eyebrows thinning out. Still have my eyelashes though...

TanyaF

It's time for treatment #4 this week. Usually I am almost back to normal at this point, but round 3 has taken its toll. Two things that are different right now is that I am also dealing with itching all over and swelling in my legs/feet. I want to scratch almost EVERYWHERE! I try to resist as much as possible and use lotions to soothe my head/skin. I'm not sure if I can do anything about swelling.

The good news is that my taste is mostly back. Water is still a little nasty so I have bring drinking lo-cal powerade.

FMG-Glad you had a good time at LGFB. I was surprised at all the goodies that you get for free. It's nice to know that there are so many out there who give their time/money to help us all.

Hope everyone has a great Sunday and week!

mankatostate

TaynyaF and Lisa- Good for both of you at almost being done! I must admit I am a little jealous...I so want to be done too! However I know it will be done before I know it. I am coming up on number 3 this Tuesday and it sounds like the third round hit you both hard so I am trying to prepare myself that it maybe harder this time. Praying that is won't be, but trying to mentally prepare that it might be.

Lisa-no I don't believe we have a weekend on call person. They always told me just to call the ER if I have an issue. I live in a small town of about maybe 11,000 people. Ever see the movie New in Town...it was suppose to take place here in New Ulm where I live. However...it was filmed someplace else where they have mountains, you could see them in the movie...we have no mountains in Minnesota. ;-) Today I got some Gold-Bond anti itch lotion and that seems to work. I plan to call right away tomorrow. Unfortunately the doctor is out of town tomorrow so I am not sure if I will be able to find out what's going on or if I will have to wait until Tuesday.

FMG-Yes I did get the shot. The first round I got it 24 hour after chemo and the second round, a week later. By that time I had learned to take claritin and aleve so second round was not too bad.

Rhodymmm-I wondered if I "shaved" my head down if that would help. Most of my hair has fallen out now though and it's still itching. I am thinking it's more of an allergic reaction...Hoping not though as I don't want to increase my steroids.

naan1004

Ok I need to vent! There is this so called friend of mine who lives in Korea and was an exchange student here around the same time I was in college, she is 1 yr older than me and is a 2 time breast cancer survivor. Anyways, she decided it would be a good idea to visit me while I was having rt breast radiation treatment in Sept 2012 to supposedly help me with cooking/housework. She wanted to bring her then 4 yr old son, her motive to send him to pre-school in the states. I knew she didn't know how to cook, but she insisted she even has a cookbook and everything!

Well, as soon as she came with her son, they were on Korea schedule and were up when we were trying to sleep, cooking, talking, eating, ... My girls needed to go to school and mind u I was doing radiation treatment at the time and was very tired! She cooked 1 meal the 3-4 mos she stayed with us. Never did any cleaning, I had to teach her how to clean the damn bathroom mirror, which had so much splatter on it, I'm sure she couldn't even see herself! I also had to teach her how to clean the damn toilet, especially since her son kept leaking on the rug, told her to clean the floor and wash the rug! OMG, she's been married for how long and her son is how old, she doesn't know how to do these basic things. I even had to ask her to at least vacuum my younger daughter's room, where they took over.

I ended up cooking for 2 more people and cleaning for 2 more people, while taking care of my 2 kids and my husband, go figure y I now have stage 4 breast cancer. She had the nerve to tell me after 3 months of intruding in my life that her son has been complaining that my husband and I have not been as nice to him as the beginning. Is she fucking kidding me!

She was planning to go back around Christmas and wanted to return with an additional kid, not her own, but one of the students she was tutoring in English. I warned her having 2 kids is way harder than having 1, especially not her own kid. She didn't heed my warming and I only ok'ed it cause she offered to pay for living expenses. Since I wasn't working I was thankful at first. They ended up using 3x more electricity and water that the amount they paid us wasn't enough, our market bill came out to at least twice too.

This is getting too long. Fast forward, she now lives with her son, the exchange student, and another female adult she asked to come and help her cause without me she can't do anything. She texts me today and has the nerve to ask me where to get Halloween costumes, I flipped out. I gave her a piece of my mind. I told her she doesn't know what I'm going through since she had early stage breast cancers, went through chemo only once, surgery twice and radiation twice. I have stage 4, everything hurts from head to toe, what does she know about how I feel! I'm worried about who will take my girls costume shopping and here she is asking a sick person where to get costumes. She has access to internet, she has a smart phone, she has other friends she can ask, and I'm sure she has ads like all of us do from Party City, ... Y are people so selfish and senseless, I know I'm always giving, but isn't it time I receive and not give for once? So frustrated and hurt!

mankatostate

Naan-I am so sorry you have to deal with that. Go ahead and vent...I hope it helps...sometimes you just gotta do that! I remember years ago when my MIL came to help me with my oldest son (who was 2 1/2 at the time) I was pregnant with my second and hooked up to an IV something like 10 hours a day because I was so sick I couldn't keep food down. I was on the IV for something like 3 weeks. She came for just a few days/maybe a week. I am laying down on the couch (hooked up to an IV) and her sister calls. I hear her on the phone complaining that no one is helping her to put the groceries away...I and my 2 year old were the only ones home??? Did she want me to get up and help? Drag around my IV up and down the stairs... Ummm why did she come? Also, I hadn't asked her to go shopping either that day...we had plenty of food just not want SHE wanted.Even though that happened 16+ years ago I still have a hard time forgetting that! (So this time when she offered help to me thru my husband I said what do you think!) Yes sometimes you just need to vent and wonder at why people even offer to help.

Cougarlicious

Naan and Mankatostate - I'm so sorry to read about your "helpful" friends/relatives!! It's so irritating to have to deal with the added stress when you're supposed to be getting relief.

SewStrong

naan, What a horror story. You were way too nice to that "friend". I believe I would have bought her a plane ticket back to Korea very early on. The stress you had over those months of her "help" couldn't do anything but harm you. I could smell the PEE you described because I had four sons and a husband. It's amazing how some people don't see past their noses. I can just see the caos that caused your household and I know from experience, when anyone is living with you, every bill goes up...water, electricity, food, gas for the car, and just every little thing unimaginable. You will surely be rewarded one day for not kicking her out on her butt. Your putting up with that shows what a kind, loving person you are. I haven't forgotten you. You're always in my prayers. You are sometimes the first name I mention because somehow, I connected with your story when I first read it. You take care of yourself first and foremost and tell everyone that is standing in your way what you need. Don't feel guilty, just do it. You don't deserve to be in that much stress while going through treatment. Your ciber friend, Sharon ( I changed my username because I sew and am making hats.)

naan1004

Thanks ladies I knew I could count on u to understand!

naan1004

Cougarlicious, some inspirational stories for u http://thebreastcancersite.greatergood.com/clickToGive/bcs/story/why-me766?origin=BCS_FACE_BCAWARE_STORY_TEXT_WhyMe_092413_CTG&utm_source=social&utm_medium=bcaware&utm_term=20130924&utm_campaign=why-me766

http://thebreastcancersite.greatergood.com/clickToGive/bcs/story/the-day-i-realized-how-strong-i-really-am240?origin=BCS_FACE_BCAWARE_STORY_TEXT_HowStrongIAm_092113_CTG&utm_source=social&utm_medium=bcaware&utm_term=20130921&utm_campaign=the-day-i-realized-how-strong-i-really-am240

My favorite story http://supportthefightagainstbreastcancer.com/breast-cancer-survivor-wows-x-factor/?utm_source=social&utm_medium=bcaware&utm_campaign=breast-cancer-survivor-wows-x-factor&utm_term=20130918

Hope u get some inspiration from these!

mankatostate

So all you praying ladies I could use prayers for peace tomorrow as I have number 3 and it sounds like a lot of you on TC have had a tough time with number 3. I realize everyone is different but I am working myself up about this. Today I went to go help with something at church met a lady who is dealing with breast cancer same treatment and had to stop last spring after number 3 because she reacted bad...ended up in the ER for days. I do believe having my husband out of town this time is adding to my worries. I have been planning on bring my 16 yr old with for company but this morning I could tell he's starting with a cold so I think I will just be using him for a ride only.

beeve

You are in my thoughts manka - I'm just short of two weeks past infusion #3 of 6.  I'm still having a lot of trouble, mostly the fatigue and just general weakness.  Fortunately, my MO already has me scheduled for labs and an appointment tomorrow.  My worst side effect is this bizarre cramping that he says is from the neulasta but it isn't pain in the bone.  I feel overly bloated and my abdomen is rigid and the muscles of my ribcage are in spasms and charliehorse.  I hadn't taken any Vicodin in days, I took 2 this afternoon and it's barely made a dent.  Thank god I made a big pot of chili yesterday so the husband is fed.

A very good, very old friend (we've known each other for over 35 years) is coming from Dallas at the end of the week, in part ot stock our freezer with something other than the crap my husband brings.  That is not a criticism of him, he is feeding himself and I eat what I can manage, but I feel badly because I've always loved feeding him - oh dear, i'm not one of those wives.  I'm not a Donna Reed, but I love cooking and feeding people and I'm quite good at it.  He's just gone back to his bachelor diet of Stouffers and stuff like that.  I try to avoid processed food, so it's a horror movie in front of me but it's his choice and I'll get back to healthier cooking by christmas I'm hoping, as my last chemo is mid November.

My henna tattoo is faded but still there.  I may have it done again, but I know I bought some inkjet Temporary Tattoo medium and I can't find it anywhere.  That would be fun to play with.  I guess as far as being bald is concerned, I've turned it into an artistic opportunity.  My new 'temporary' motto is "If you don't have it, flaunt it."

Cougarlicious

Naan - thanks for sharing!! I saw that X Factor video earlier, how awesome is she! I've been fortunate to find a support group of other pregnant cancer moms (it sucks there's so many of us!) and it's been great to hear their success stories and share in their knowledge of treatment plans.



Mankato - best of luck tomorrow! Hoping you come out unscathed.

mankatostate

Thanks Cougar I made it thru number 3! Now I just have to get thru a few sleepless steroid nights... and a few days of pain and I will be able to say I am almost done.

Ashley410

So sorry to hear about everyone's bad treatments and horrible friend visits! Sometimes people have no idea how to help that they just make it worse without even realizing it, yet she should have considering how long she stayed there!



So yesterday I had my first Tx4 treatment it went well -it felt very long though! Like I was in that chair all day! But so far so good, I took the A/C treatments really bad so the seems easier but it's only been 1 day! Hopefully it stays tolerable!!



Good luck to everyone with their side effects and treatments!!

lighthouselady

Ashley - I'll be curious to see how you do on Taxol as you're just a bit ahead of me.  I have my last AC next week.  I started reading through some posts on here about DD Taxol and it scared me - a lot of them said it was worse than AC!  Yikes.

Ashley410

Lighthouselady-so far I'm just exhausted, totally exhausted but I'll take that over the A/C treatments anyday! I have a slight headache and stomachache too though but nothing as bad as the prior treatments!