CHEMO: peripheral or portacath?

gaulkari · Aug 12, 2004

Sorry, forgot to put in website address...http://www.cancer.org/docroot/ESN/content/ESN_3_1x_Reach_to_Recovery_5.asp

leslie :-D · Aug 12, 2004

i just called them and they sound WONDERFUL.

but i need lisa's permission which i know she'll be fine with this.

thank you gaulk.....what an invaluable referral you just gave me and my sister, and for her husband too....they provide spousal support.

i find this an opportune time to share with everyone who is reading this thread.

even though it is therapeutic for me to be able to share my peaks and valleys with you, my intent is to bring you with me on lisa's journey.

i want to share what goes on inside a patient's head, her psyche, soul, spirit....it is vital to their healing process.

i also want to share lisa's legacy for she has always been my hero.

and my intent is to 'journalize' this publicly from beginning to end.

and if anything can be learned from my sister's experience, this in turn will only benefit us as nurses and therefore, our patients.

bless you all, most sincerely.

leslie xo

jnette, ASN, EMT-I · Aug 12, 2004

i am going over saturday to give her the quilt. i hope it doesn't send her over the edge, because if it does, we'll be going over together.

...and there shall be untold numbers of invisible outstretched arms to tenderly break the fall, lift you up, and carry the both of you... for ever how long is needed.

leslie :-D · Aug 12, 2004

...and there shall be untold numbers of invisible outstretched arms to tenderly break the fall, lift you up, and carry the both of you... for ever how long is needed.

:crying2: thank you jnette. your sensitivity just burst me into tears.

bad moment.

sometimes one wonders if there is a benefit of not being able to feel, to be heartless. i know it's not desirable, but sounds so painless.

thank you again, and again, and again.

xo

jnette, ASN, EMT-I · Aug 12, 2004

thank you jnette. your sensitivity just burst me into tears.
bad moment.
sometimes one wonders if there is a benefit of not being able to feel, to be heartless. i know it's not desirable, but sounds so painless.
thank you again, and again, and again.
xo

(((((((((((((((((((((((((((((((((((HUGS)))))))))))))))))))))))))))))))))

leslie :-D · Aug 14, 2004

i just got back from lisa's house.

and yes, she was totally overwhelmed with the quilt as she just hugged it and cried.

then we made light of it. and she was telling me that even though she doesn't have much of an appetite for a couple of days after chemo, when she is hungry, she has this newfound and consistent craving for pancakes.

she's had pancakes 3x/this week. and she's not on any steroids.

her oncologists also told her to expect an avg. wt. gain of 7-10 lbs.

this is such news to me. anyone hear of this increased appetite and its' associated cravings????

bless you all.

with love, leslie xo

BernieO · Aug 16, 2004

Leslie

I too gained about 15 lbs with chemo. I craved canned fruit. I once sent my sister to the store to buy 5 cans of assorted canned fruit!! I ate them all in a couple of days.

I never ate canned fruit before chemo and haven't since. Food cravings are strange thing.

The discussion group for ovarian cancer which I belong covered this topic and found that food cravings is very common during chemo.

May your sister continue to do well.

Cindy

leslie :-D · Aug 19, 2004

thank you cindy. your input was very helpful.

i just got off the phone with her....she had her 2nd treatment today. and she also started losing her hair this morning in the shower.

she got an epogen injection today and will go for the neupogen one tomorrow.

she sounded like crap tonight.

i think a lot of it is losing her hair.

but lisa is determined to go to work tomorrow and friday, then will be on vacation for 2 weeks.

they warned her that she'll wake up tonight around 2-3am and feel like hell.

it sounds like these nurses have this whole regimen down to an art.

i personally find it extremely helpful.

but then again, i'm not going through it.

i personally don't like surprises; lisa loves surprises.

cancer is never a pleasant surprise.

it's kind of taken the joy out of her love for the unexpected.

we'll get her back soon enough.

they say it's God's will.

hmmph.

skislalom · Aug 19, 2004

Gosh where do I start...I went thru cancer with my mom, she had both breast and ovarian cancer...she fought and won the ovarian...bc wasn't so lucky (lost her 9/3/03 @ age 56)...I do have a bit of experience since I cared for her.

Porta cath-keep it as long as she can - mom had hers removed and later ended up with a PICC for FIFTEEN MONTHS! (clots in her lungs had her on coumadin or lovenox-no chance to place a port) She had some veins really damaged with Navelbiene before they got her PICC in. Even when they weaned her down to Herceptin and Navelbiene every 2 or 3 weeks...we still had to do sterile dressing changes weekly - that was okay - an hour drive each way, but we LOVED her chemo nurses so it was worth it.

She may be getting decadron with her premeds (zofran etc)-my mom always asked ... what's in the cup and why are you giving it to me! LOL :rotfl: many chemo patients bloom :) mom had alot of hard candies available (creamsavers and soft center ones were her fave) for the metallic taste she always had. Her cravings...maple bars and my homemade strawberry jam (1 pint a week!) Another thing that helped her after her first round of chemo (Adriamycin, Taxol and Cytoxin) she drank aloe juice (not gel) to help heal her gut...we've always had IBS-D and it really did a number on her bowels.

I don't remember how old you said your sister is...but my mom was 53 when diagnosed...I bought her some "skull caps" like bikers wear...she LOVED em. One was a wolf print the other a red bandana print and they had terrycloth bands inside that were very soft...tied in the back. I found them at the state fair. She was never a hat wearer but they were more her style than a scarf or crochet beanie.

They believe my mom carried the BRCA-2 gene and I went in for my first mammo...it wasn't normal so, now I get to go back for my 6mos follow up diagnostic for a spot and some microcalcifications, please...go get your mammogram if you haven't yet.

Many hugs...It's not an easy journey-I will keep your sister and your family in my prayers.

~Toni

edited to add these websites for your sis (and you)...I don't know how internet savvy she is, but maybe you can take a look at these.

http://www.chemoangels.com/

http://forums.delphiforums.com/madeit/start (this is a group of cancer patients and survivors...LOTS of support here-for YOU too-they are great)

http://www.facingourrisk.org/aboutForce.php (about breast cancer risk)

http://www.acscsn.org/ (another great site to chat with patients, survivors and caregivers)

leslie :-D · Aug 19, 2004

oh toni.....

thank you so much.

yes lisa (will be 43 on 8/29) also takes the decadron as a premed.

and she is also on the adriamycin, taxol and cytoxan then will have aggressive rad tx after.

i definitely will look into these sites and will try whatever you state that works.

i've already told her to keep the portacath in as long as possible.

she immediately responded with she wants to get it pulled as soon as possible.

whatever she wants. it's certainly not worth the argument.

and i am so very sorry to hear about your mother.

truly, i really am.

pm me anytime, if you wish. you sound like you have it together.

peace,

leslie :kiss

skislalom · Aug 19, 2004

oh toni.....
thank you so much.
yes lisa (will be 43 on 8/29) also takes the decadron as a premed.
and she is also on the adriamycin, taxol and cytoxan then will have aggressive rad tx after.
i definitely will look into these sites and will try whatever you state that works.
i've already told her to keep the portacath in as long as possible.
she immediately responded with she wants to get it pulled as soon as possible.
whatever she wants. it's certainly not worth the argument.
and i am so very sorry to hear about your mother.
truly, i really am.
pm me anytime, if you wish. you sound like you have it together.
peace,
leslie :kiss

Love to help any way I can, I wish I'd had alot of the info when we were in the midst of her cancer. I'll do anything I can to help! It was a very tough journey but we both learned alot and became extremely close. I miss her like h#ll but I'm making sure I am keeping all the promises I made to her...so when the going gets tough and I don't feel like doing it for me, I do it for HER.

If I remember correctly...the dose of dex is a pretty significant one...enough to spark her appetite (and temper) my mom used to get so chatty on dex-she'd talk your ear off. My mom (Janie) would be okey doke for about a day and a half after treatment and then she said she felt like she had a bad case of the flu for the rest of the week. Pain, hotness and numbness in the hands, feet and sometimes bone pain too was a common complaint with the Taxol..I imagine she has very wonderful nurses that explain what to expect to her. I ended up shaving my mom's head with the clippers - got the hair loss over quickly rather than clumpily. We laughed, we cried...but I felt quite honored that she asked me to do it. She too had some pretty intense rads...cold aloe gel in the fridge is soothing and cooling and aquaphor to help heal (when they allow it). She ended up with so much radiation (she had WBRT and Radiosurgery too) that we'd joke that she should glow in the dark..hehehe

The portacath she had was placed poorly and was always uncomfortable...it was on (or near) her sternum as opposed to a softer area where it wouldn't have been so uncomfortable. She had that taken out at her earliest convenience..I still don't advise doing it right away. It's her lifeline.

Anywhoo, holler if you need an ear or a shoulder!

~Toni

memesusan · Aug 20, 2004

Leslie,

I'm an NP in a gyn/breast onc practice, & we give lots of the dose-dense a/t/c regimen that Lisa is getting. It sounds like you have gotten good info about it.

Regarding the dexamethasone, lorazepam helps the jitters/sleeplessness. Her scalp will feel normal after her hair falls out, unless she shaves which we don't advise (too easy to get folliculitis).

We tell our pts that this chemo is like a fulltime job with overtime--and is an investment in their future health..it seems to be a useful perspective on the fatigue & overwhelm that people go thru. Also, if she can get out for some exercise as many days as possible, that helps keep fatigue less (research says so too).

Right now I'm sure Lisa wants to get back to normal--"normal" looks like an oasis to her right now. Later she will come to see that she'll never be exactly the same normal (she may be healthier & wiser but she'll have the experience of this behind her.)

I can tell she is lucky to have you for a sister.

All the best to you both.

Susan