August 2013 Chemo Sisters

mankatostate

Martha-Yay for you...there is no place like home especially when you are sick!

Lighthouse-I have been meaning to say I was sorry to hear about your hair. I know it must be hard for you. I had to deal with grieving the loss of hair earlier when I first found I had to get chemo. I went thru all this in the summer thinking only radiation and then met with the Oncologist and he said chemo...yes I had to grieve then. So when the time came and my hair started to fall out I knew it would happen. You on the other hand I am sure kept holding out hope for the cold caps to work...so its ok to let yourself feel down and grieve your hair loss for a while. And as (I think it was Lisa) who said you may still have lost a lot less hair than the rest of us, or your hair may grow back more quickly.

lighthouselady

Saltyjack - Yep - let's be cranky together!  :-)

I sent a text to my friend (she's going through ovarian cancer) about my hair and said "Stupid cancer"

Her response?  "Damn cancer.  Horrible stupid terrible worst-thing-ever bad rotten putrid wicked dreadful awful horrendous atrocious damn cancer."

LOL  I hate that anyone else has to walk this road, but it sure makes me feel better knowing other people feel like I do (and can make me laugh in the process).  That's why I love this board.  Hubby thinks I obsess by always reading and posting, but it makes me feel better to talk with women who are going through what I am.

mankatostate

LOL lighthouse about your husband. Mine thinks the same thing. I need to remind him he is always on some "sports" forum...Isn't this so much better than that?!

RhodyMMM

Hey Michelle, I too just lost my hair. We had buzzed it down a week ago (had a Hair of the Dog party followed by Whine and Cheese!). I cried when we started, laughed when we finished, but still cried again when the shorties started falling out. My scalp was bothering me so much that I helped it along by pulling out the loose ones, but there were still some scraggly stragglers so last night we shaved the rest. That left a lot of prickly nubbies, and so I got my electric razor out and shaved it again. That helped. Hubby says he much prefers the Kojak look to the mangey dog look. It does feel better. Slept with a knit cap last night, wearing my favorite ball cap today. Feels weird but I will get used to it. Certainly saves a lot of prep time! I was never one who was all about my hair, but it was MY hair. Everyone says, don't worry it will grow back and it may even be curly! They don't understand. My hair was part of me, just like my breasts were too. They are both such a part of femininity....I don't feel like a woman anymore. So today I went through my jewelry box, and look at some old jewelry that came from my mother-in-law's, and decided it's time to start having fun with accessories. So that is my plan to feel good about myself. And I am signed up for a "Look Good, Feel Better" class on Sunday afternoon. If you are not familiar with it, it is a free program by the American Cancer Society for people undergoing cancer treatment. Every one that I have talked to who went to it says it is a great program!  http://lookgoodfeelbetter.org/programs/programs-for-women

Hope you are feeling better today!

Martha

lighthouselady

Thanks Martha.  I looked into the Look Good Feel Good classes, but there are none near me.  Boooo!  I do still have quite a bit of hair, but it is so scraggly and gross and matted that even if I were to keep it, it would be a struggle to make it look halfway decent.  I think that would be more depressing than just biting the bullet & breaking out the headcoverings.  I'm wearing one of my new buffs over my hair to day to kind of get used to how I look, since I'm home alone.  

I'm wondering what may hair will grow back like, since it is already super curly and thick!  LOL  

TanyaF

hvv-Yes. I smell things all around my house. I can barely go into the garage because my BF has been working on his Jeep for the past month and the oil smell is so strong. Another thing that surprised me was the smell of bananas. I can't eat them because the smell makes me want to vomit. I use unscented lotion as well.

This is the first time my mouth has been so bad that even water tastes nasty. It wasn't like this until 2 days ago. I still have limited taste buds. I think it lasts longer each treatment. I am almost 2 weeks post tx and usually am back to 99% by now, but not this time. 

My biggest frustration right now is paperwork. I have been trying to get my job to fill out my disability paperwork for the past 2 months. I have gone in, mailed, and yesterday I called after no response and still nothing. I thought my HMO was bad for taking a month, but two months?? Frustrating.

LisaSp

Michelle: I agree with your friend damn stupid cancer! Thanks for sharing, that was so funny. Miserable nasty smelly dirty rotten idiotic cancer! So there!



Welcome home Martha! Michelle and Martha, so sorry about your hair. It's so miserable that our treatment seems to take so much away! But in the end, it will be so worth it.



Thanks Mankatostate for your kind thoughts. In some ways I do feel fortunate when I think that it could be worse.



I was glad to go out to get my antibiotic today, just getting away on my own was great. I'm still a bit ill but improving, I just hope the antibiotic prevents the ear infection from going crazy.

tonya845

HVV I also have a very heightened sense of smell, everythink seems to make me nauseous. I'm not sure what to do about it.

Starting to feel better today, but then hubby came home sick with stomach bug, ugh!!! I totally Lysoled everything!

Hope everyone is feeling good! God Bless!!!

mankatostate

Hvv-No fun! Praying you stay healthy! Anyone else bummed that we have to go thru chemo during flu season?

ForMyGranddaughter

RhodyMMM, In 12 oz of water add:

1/8 c flax seeds (cook for 30 minutes on low) then add

1/8 c chia seeds

1/8 c wheat germ

1/2 c oatmeal (NOT instant)

Mix and match with other cereals or grains that you like.  Just remember the harder grains will take much longer to cook. (I also add 2 green tea leaf bags, nutritional yeast + shiitake mushroom powder).

continue to cook on low heat until done.  You may need to add more or less water.  eat as a hot cereal with milk, butter + sugar or make a smoothie by adding frozen fruit, more brewed green tea + agave syrup.

LisaSp, believe it or not it never crossed my mind to take my temperature.  I was just cold and didn't have my head covered.  Once I put on a scarf + closed all the windows, I was fine.  I just took my temperature (too late, I know) it was 98.4.

lighthouselady, I'm sorry you lost your hair + that the cold caps didn't work as you expected them to.

Sweet dreams to everyone!  Tonight, our bodies will be restored as we rest.

Ashley410

Is anyone doing Tx4? If so how is it doing? They wanted me to change to weekly but that added a month onto my treatment so I'm hesitant!

lighthouselady

Ashley - I still have 2 AC treatments to go and then I will start Taxol.  Originally my MO said Tx4, but then he changed to weekly.  I don't want to do that because like you said, it's another month of chemo, plus it's 12 treatments versus only 4.  It's my understanding that the weekly is a lower dose so the toxicity and neuropathy side effects are supposed to be lower.  However, you have less time in between to "recover", so there is a higher risk of low blood counts, infections, etc.  I'm going to do my best to convince him to let me try the biweekly, but we'll see.

naan1004

Hello my sisters, long time no post. If u have FB, PM me cause I post updates there more often. Been so busy with family, treatments, and surgeries. Finally finished my brain radiation last Tues, also got CT on same day to do radiation on spine and appendix, cause they have been most painful. A few hrs after I got home, I get a frantic call from my radiation onc telling me, I don't have a tumor in my appendix, but rather have appendicitis. He told me to go to the nearest ER before it bursts! I went to my local ER, where they confirmed it was indeed appendicitis, so I had an appendectomy using endoscopy, so less scarring and faster recovery.

I was scheduled for port insertion on same week Thurs, but it was too close to appendectomy, so they rescheduled for this week Mon. Tues was scheduled for another CT for lung radiation, cause cough not going away and having shortness of breath after walking only a few steps. So unfair that I have lung cancer when I never smoked, but did inhale lots of second hand smoke. Tried to get a walker with a chair, but don't have Medi-care, so might have to pay cash. Hope I qualify for Medi-care. Been working on applying for disability back to Oct 2011 to now.

Will try to read your posts later. Been really tired lately, but hanging in there.

gavinsgrandma

Naan,my thoughts and prayers are with you, you really have a lot on your plate to deal with, as if cancer is not bad enough!!!!!!!! Sounds like we are all having similar issues with taste and smells, even water tastes bad. I am 6 day's post 3rd A/C and it is really kicking my butt, low WBC and RBC'S every time so I have had to take antibiotics with each treatment. I think the fatigue an the emotional part are the worst. I am not a cryer but it feels like I have been crying for 2 months, well one more A/C and then 12 Taxotere so I guess I am almost 1/2 way through with chemo. May I say that this shit sucks!!!!!!!! I know my family loves me and I have a great support system but this is the hardest thing I have ever been through and sometimes I just feel like the people around us just don't get how hard it is. There I am done ranting. I wish a peaceful day for all of us and may God bless us and keep us in our hours of need.



Shary🍁

lighthouselady

{{hugs}} Shary.  This does suck.  Even on my good days, it's not really a good day, you know?  And I can't really complain because so far (knock on wood) I've had it pretty easy I think.  I can't even drink water anymore.  I practically gag when I take a few sips with my medicine!  Yuck.  Sprite is my go-to drink these days.  

Julie - Good grief girl... as if you didn't have enough going on?  Emergency appendectomy?  Not cool!  However, that's better than cancer in your appendix?  Maybe?  LOL  Or not.  {hugs} to you too!

mankatostate

Oh Dear Naan...I don't have time to post now I am going out the door, but wanted to say I am sorry to hear about the appendicitis! Prayers are with you!

Anonymous

Tx12 weekly is more effective than Tx4. Says my onc and my own research. Please review for yourself

V

Togetherness

Naan so sorry you are having such a difficult time. So glad they got the appendix out of there before it burst.



Lighthouse I know what you mean as far as good days. Not sure what that is anymore.



Gavinsgrandma I agree I really don't think the family and friends get it. I have a great support system as well but I try to be brave and put on a good face even during my sickest times. This is absolutely the hardest thing I have ever been through.



With that said yesterday a rash on my arm where they put my chemo IV in and the fact that taxatore has fried my veins became swollen and red. Slept 15 hours yesterday and then this am when I woke up I called my MO. Went in and I have an infection in the arm and running a temp of 100. They gave me antibiotic through IV and meds for temp. They wanted to admit me to hospital but I promised I would call tomorrow if I am still fatigued and running a temp. gave me a script as well. I think what they did today will help. Hope so!! So that woke up any of my caregivers and friends what a difficult time this is and how hard this chemo is on my body. I wasn't smiling today!!



Wishing everyone well and happy thoughts!!

gildedcage

Naan - So glad you posted. I was just thinking of you the other day. Glad you are hanging in, even if it's been a rough road. 

FMGD - Thank you for your oatmeal/smoothie recipe. I'll give it a try. 

It's been a little over a week since the last chemo and I'm finally starting to get some taste back. *skies part and angels sing* I'm finally feeling somewhat back to normal here. Thinking of everyone and I want to extend my well wishes to those just starting a next round of treatment. I hope you guys have an easy time of it. 

SewStrong

naan, I did miss you but didn't stop praying for you and your girls. I'm glad to hear that they did the appendectomy. That was scary, I'm sure. You have been through so much, but just know, even if I don't post often, I am still praying for you. Sharon. I changed my username to SewStrong since I am a seamstress and am making hats.

lighthouselady, you deserve a pity party. Wallow in it for a while, then get back up and move on. If you could see my hair, you would laugh hysterically and think yours looks beautiful. I truly look like a coconut, with that hair sticking up all over. Not all of mine fell out. I have probably 10% of it left. I can't even pull out the remaining hair. I won't shave it for fear of feeling like I'm sleeping on whiskers. I just wear a hat around the house and the wig when I go out. I styled the wig like my own hair, so no one has really noticed. I ask friends and they say they didn't know. I even fooled the nurse when I went in for the CBC. It'll be better one day and you can laugh about it all. Go out in the woods and scream. Scare a few deer or something. That always helps me.

SaltyJack

HVV, my MO has me scheduled for 12 T/H after I finish A/C - I thought she said it was as effective and MUCH less side effects. I'm lazy - I'll take your word for it that you've found research saying it's more effective - yay!

Yes, Naan gets the can-you-top-the-fun-of-chemo-alone award for this week. Hope you're feeling better soon. Cuddle that kitten - it's gotta help.

I have kind of typical male-pattern-baldness hair at this point - a little batch on the crown and all around the sides. I'm really tired of having hair constantly drifting down around me....but just can't bring myself to cut it all off yet. I want to hang onto the cap/hat look as long as possible - but it won't be much longer.

Praying for sweet dreams and no side effects for us all!

ForMyGranddaughter

Naan, so happy to hear from you + to know that you're OK even though you may be having a challenging time.  My prayers are with you.  BE well!

I have allergies and the change of seasons always triggers nasal congestion, sneezing, coughing + flu like symptoms . . . although they're allergy related.  I believe being bald in a draft house makes me really cold. 

Temp is 98.2.  No chills . . . I guess that's a good sign.

I'm going to cover my head to go to bed . . . hey, that rhymes!

Great night, everyone.  Praying that you all have a peacefilled + restful night's sleep!

Martie1228

ASHLEY!!!!! So glad to see you! How are you doing? As for Taxol, I'm choosing 12x weekly based on articles, Strong Case for Weekly Taxol" (06/03/13) andWeekly Low-Dose Taxol Offers Same Benefits as Higher Dose every Two-Weeks with Different Side Effects" (06/12/13). The paragraph that sold me was, "This is actually going to change my practice," said Dr. Silverman, who has "generally" used the dose-dense biweekly schedule in the past. This commitment to change is perhaps all the more impressive because the dose-dense paclitaxel approach was pioneered at Memorial Sloan- Kettering.



GGM/LisaSp: Grandboys tattooed my head with Teenage Mutant NinjaTurtles. . Sweetest comment : After church, my 2-tear-old pointed at my wig and said, "Mimi, hair - you feel better?" Then he told me he still has his "big hair"! 👱



Sorry about all the blood count issues! My WBC was 13,000 today (up from 8,000 the past two treatment). RBC continues to drop (9.8, 28). As if the fatigue isn't bad enough with the chemo , right?!



Today was last A/C. Yay! Feeling pretty tired now due to anti nausea meds and Ativan. Will check back in soon. Miss everybody!

lighthouselady

Martie - wow your counts are great!  I had labs done yesterday and my WBC was only 3300.  I guess my ANC (total blood count) was fine, so they told me I was good to go for #3 today.

I'd be interested in the research on weekly vs dose dense Taxol.  Everything I've read (and I research things to death) said that weekly is better as far as side effects, but in overall outcome (recurrance & survival rates) the two were equal.

FMG - My son has horrible allergies and wakes up sniffling and sneezing every morning despite medicine and weekly shots!  It's miserable.  

gavinsgrandma

Feeling human again today, what a difference a couple of days on antibiotics makes😄😄😄😄

Martie, congrats on last A/C 🌟🌟🌟🌟

Traveling to Carson City today for my 1 week f/u with MO, and then 1 more A/C to go.

My thoughts and prayers are with all of you ladies today for minimal SE'S, and for those having or had Tx this week God Bless and take care.



Shary🍁🍂❤️

Ashley410

Yes I did hear the side effects would be easier with Tx12 but I just don't want to add on the other month. In comparison to effectiveness I believe the 2 versions are the same! I just wanted to find someone doing Tx4 to see how they were doing! Everyone I've meet has switched over to weekly. Well Tuesday will be my dose dense treatment and I'll let everyone know how it goes! Thanks Martie for your concern, I appreciate it!

Good luck all with your treatments!!

RhodyMMM

Wow, once again lots of posts!

FMGD, thanks for the cereal recipe. I will have to try it. Sounds really healthy.

Lighthouse Lady, too bad there are not Look Good Feel Better classes near you .....did you check the LGFB site?

Martie, congrats on your last A/C treatment today! I had my second one today, so I am officially half-way through the first leg. Then I will also be doing the weekly Taxol x 12. Thanks for everyone's comments about the weekly versus dose-dense bi-weekly regimen. I had a port placed this morning before my chemo, so I imagine I will be sore a bit later. Not so bad right now. And hopefully the chemo pre-meds will work as well as they did the last time. My main issue (until the profound neutropenia) was fatigue.

Hope everyone has a peaceful, restful night!

ForMyGranddaughter

Martie1228,  Iron 65mg should help with both fatigue + your RBC.  Happy that your WBC numbers have increased!

RhodyMMM, I just bought a new blender.  I lightly cooked fresh kale + spinach to add to my cereal mix. 

gavinsgrandma, glad to hear that you're feeling human again!!!

mankatostate

Just wondering. Is anyone else dealing with an itchy head? I also have some red spots. I don't know if it's from my head being shaved or if it's from the chemo. Also my palms are itchy. Any of you dealing with something like that?

gavinsgrandma

Mankatostat, I have not had too much trouble with my scalp, being a retired hairstylist I just keep shampooing my scalp with a good shampoo and even put a little conditioner on every time I shower, we live in a dry climate so I figure every thing could use moisturizing. I have had a few red bumps but the go away pretty fast, but all of my skin feels dry and itchy😛I will be doing Taxotere after my next A/C and they told me the main SE with that is numbness and tingling ( neuropathy) in hand and feet, I wonder if the itchy hands are part of the SE'S to?