April 2013 Chemo Group

Jen987 · May 2013

Kerri, you'll do great. The first infusion is usually uneventful. I think everyone gets nervous of the unknown. I brought my husband the first time but have gone by myself since. He was so bored and fell asleep anyways. Haha. Days 3-4 might be when you feel your worst. Chemo isn't fun but doable. You can do it. We are all sister warriors. Check back in here so we can see how you're doing.

CarolA5587 · May 2013

Well, hmmmmm. Today's adventure brings the hives. Yup. Rash on my arms and legs. But most uncomfortable are my hands. Red, swollen, itchy. Taking benadryl, using cold compresses. Called the oncologist nurse. Told me it couldn't be the chemo since I'm almost 3 weeks from last infusion. Her solution was for me to call my pcp and see if they could get me in to do allergy testing. Really? Aaarrgh.

indenial · May 2013

Kerri, you can do this! You're extra-ready by now!! We're pulling for you!

Heather, so sorry things haven't worked out the way you wanted. On the plus side, at least you will get through the chemo & be DONE, not have it hanging over your head still... And it does seem that those on Taxol/Herceptin have an easier time of it, both from what I've read here & from those I've talked to on the infusion floor.

Pamela! LOL!!! I loved this episode! I woke up in the middle of the night in an anxiety-ridden state and reading your post made me laugh & calmed me. I'm glad you finally got to have chemo.

Carol, when I had hives, it was about 11 days out from round 2... My MO thought it probably wasn't the chemo itself but couldn't rule it out, he said sometimes people do react with a rash a week or two later. Not sure about 3 weeks out though. He also said I should ask my chemo nurse to watch me/start slow with the next round to make sure I didn't react. For me it seems like a reaction to another med I was taking for heavy bleeding. Did you start any new meds within the last week or so, or eat any new foods or change laundry soap or anything? Oh and I should have gone on steroids because my hives/swelling were so bad, but I didn't... I did find the combination of Claritin plus round-the-clock Benadryl plus Pepcid (which is an H2 antagonist - blocks histamine receptors on your skin or something like that) gave me the most relief, but it was still almost a week of agony. Hope it eases up for you sooner!

I'm finally feeling mostly functional now (day 9 post round 3). Most annoying lingering SE seems to be some neuropathy. Also finding my right arm (chemo arm) to be uncomfortable, kind of feels heavy and achy and occasionally mildly swollen. Not sure what that's about but it's driving me nuts.

DeliriumPie · May 2013

Just a thought on the rash.. The day before my fourth treatment I had red itchy bumps on my hands and up my arms. I also have severe rosacea so I never know if symptoms are SEs or just my crazy skin. But my MO looked at it and said that it could be pre-cancerous skin cells (whatever that is) that were being irritated from the chemo. I don't know if that makes me feel better or worse. I started using Isomers wrinkle defense body wash with tea tree oil that day and the bumps were almost gone the next day and my hands look so much better now. May or may not be from the wash. It could be unrelated entirely. Best wishes to all tonight.

Rosina0015 · May 2013

Kerri,

You got this! Wishing you the best.

MinusTwo · May 2013

Anyone on iron supplements? I just finished tx#3, but pre-blood showed red blood cells, hemoglobin & hematocrit all low. White blood cells are hanging in there, probably because I get a neulasta shot every time. Since I'm one of those blessed by the "big D", I seem to spend most of my time of the BRAT diet so red meat is out. Seems like some pro-active course would be good. The infusion nurses suggested Slow-Fe. I'd appreciate any iron stories, comments, cautions, etc.

Deb3kids · May 2013

I have had some skin issues during the AC part if my treatment. Itchy bumps that turn into scabs...because I scratch them and can't leave them alone! They are on my back, chest and arms. Basically wherever I have freckles and have been exposed to the sun. Even some of my freckles are raised now and feel dry and a little larger. (I was born and raised in Florida. I keep my dermatologist in business!) I showed my onco my skin and he said it was the chemo fighting off the bad pre-skin cancer areas. If I had bumps/scabs everywhere and not just in the sun exposed area he would have thought it was an allergic reaction

to the meds. So, I hope my skin looks better after all my treatments. Could be the one good side effect of chemo for me!

daffyc · May 2013

Minustwo, I have not had issues with needing iron during chemo, but I have taken it in the past due to heavy periods (finally had a uterine ablation last fall and that helped). I took an iron supplement for a few years and had no problems. The only thing (slight TMI) was my stool was darker than normal colored. I've heard the Slow-fe is better and gentler. Oh and when I first started taking it, I eased into the needed dosage, didn't take it all on day 1 (depending what dosage they tell you to take...or even take it every other day for a few times).

One thing is that iron supplements can sometimes cause constipation so maybe it will help balance you out?

6cats · May 2013

Wow! the things you learn! I am so glad I'm on this board! Skin issues have started showing up after AC#3. It never dawned on me that the chemo could be attacking "bad skin cells"! But I've got a spot on my nose, one on my cheek, two on my arm, one on my thigh and another on my hand. Four of them were places where I had "age spots" -- Who'd of thought!

OK, I get it!! Wear sunscreen!!

Pattysmiles · May 2013

I had read on here where someone said their age spots cleared up while on chemo,but they come back.

As for the chemo attacking precancerous skin cells....I don't know. I had gone to a dermatologist to check out "some stuff" on my face before chemo, I made a point to mention I would be getting chemo. He didn't even ask which drugs, he said its not the same. He gave me a chemo cream to apply to my face for two weeks, to kill the precancerous cells on my face. Maybe this is one of those areas where none of us gets a straight answer, or there are so many variables in the types of skin cancer to be treated?

Pat

PamelaKay · May 2013

Here's the really funny thing about having a Chemogate episode this week. I was sure nothing eventful would happen for a while. Routine chemo. Routine fill. What could happen that would be interesting? Honestly, it's never a dull ride on the Chemocoaster!

Kerri, best wishes for a nice, easy ride for your chemo.

kobrien · May 2013

All done with chemo # 1..

Found out I will need nulasta tomorrow. What kind of Claritin should I get and when to start?

Thanks

Kerri

Jen987 · May 2013

Kerri, Claritin 24 hour. Take it the day of your shot (tomorrow) and 5-7 days after. I even started it the day before just to have it my system. Then got a prescription for Ibuprofen 800 mg to help with the bone pain too. Good luck and I hope you have a great weekend without many side effects.

shipsgirl · May 2013

Interesting about skin effects. I'm on AC and all of my psoriasis patches have cleared up. I was really worried about my scalp, which is worse than the other places, because I'm cold capping and it would be hard not to scratch. But I've never had that problem. Now that is something I WISH would be permanent!!

kobrien · May 2013

Jen thanks! I got it.they gave me a dose at chemo because I started to get a sinus headache from the Cytoxan.. So I'll start it tomorrow

Glad # 1 is behind me!

Hope you all have a great weekend

6cats · May 2013

Speaking of skin effects.... I've been curious if chemo will kill nail fungus? Now that I know psoriasis cleared up, maybe my toenail has a little hope! But I guess if it falls off later, that would also cure it!!

Pattysmiles · May 2013

6cats, did I mention I also saw a podiatrist for ingrown toenail and possible nail fungus prior to chemo! Lol

Anyhow, ingrown toe nail was fixed. My other toenail was determined to not be a fungus. He did mention he sees A LOT of chemo patients who lose their nails,,,,I guess he is expecting me back?

I am wondering if our skin conditions are getting better because we are hydrating so much? It could in theory, have a part in it all.

I do notice that my skin seems softer...especially the face, but it could be from the "chemo peel" I had done prior to chemo?

Pat

rockermom66 · June 2013

This is interesting about the skin conditions, I will definitely be on the lookout! I have tx #3 on Tuesday.

I have no blood in my nose at all for the first time since I started chemo April 24th. I think it might be because of the super killer antibiotics I've been on since the Febrile Neutropenia. I am feeling GREAT. Just about normal and so it goes...

Picked up my Dexamethasone today, joy! Here comes the weird in 3 days.

CarolA5587 · June 2013

Thanks for all the comments on skin. Interesting. I'm day 3 of the hives. I have not started any new meds. The only thing that I think it could be is some hand lotion I put on Wednesday morning. I have used it many times before but it has a good deal of perfume in it and it just didn't feel right when I put it on. I washed it off a few minutes after I put it on but maybe the damage was already done. Maybe my body just can't handle that mix right now. My hands are still very swollen. But I worked a graduation tonight and it was Texas summer weather....close to a 100 degrees with 20 mph winds. I'm sure that didn't do much to help. At least I was so worried about my hands that it never occurred to me to worry about my wig and whether it was going to go flying down the football field! LOL.

So glad for this forum. I learn so much from you ladies.

AllieM · June 2013

Carol, I've had hives after the second and third TC. With my first treatment I had an itchy red rash on my chest and neck that started about a week out. Second time hives that migrated that started about a week out and this last time I had hives everywhere and both my hands and forearms swelled up so much that I couldn't see my knuckles (I have skinny old lady hands). It started about two weeks out. Each time lasts about a week. My Mo kept saying it wasn't the chemo, but then this last time the nurse said she thought it was the taxotere. Google hives/chemo/taxotere and you will find lots of references from other cancer discussion boards with similar experiences. Of course it's possible you have an allergy, but in my case I've never been allergic to anything in my life and hadn't changed anything. I find it boggling that the docs don't want to say its the chemo when it appears to be a fairly common SE. Anyway, I tried everything I could think of and I feel pretty sure it would've just lasted a week whether I had taken any meds or not. Ice seemed to be the only thing that really helped.

kobrien · June 2013

Came home from chemo and CRASHED! Slept on & off all night.. And up at 630 this morning. Feeling a bit of a headache and very off balance. My cup of coffee tastes like CRAP... 😂 My favorite part of the morning.

My face and neck are red as if I have sunburn- and I've stayed out of the sun. My nurse told me its prob from the dexamethasone.

I heard that Cytoxan can cause sinus headaches and I am already prone to those. They gave me a Claritin when it started during the Cytoxan infusion and it helped.

I go in at 3 for that nulasta shot- apparently because my Lyme disease test was "positive"- I had Lyme last Year in April and my do tested positive this spring- so I requested another test just in case even thought I wasn't symptomatic like last time. They re drew they blood work at the cancer center but the MO wants me to have the shot just in case.. I'm NOT happy about it because my pre chemo WBCs were 20.4 due to the steroids..

So I will start my Claritin this morning..

I was so scared and honestly- the process wasn't bad.

They saw how scared I was and gave me IV Ativan.. Nurse sat down and answered all of my questions. Now-- it's just wait and see what side effects I get..

Hope everyone has a great day & thanks for listening

Kerri

BeHereNow · June 2013

Sounds like you're hanging in there Kerri. I hope your day is going well. I'll be thinking of you.

Katie

CarolA5587 · June 2013

Oh, Allie, thanks! That is so helpful. I'm pretty sure you've posted about some of that before. Funny how we don't hear stuff until it pertains to us. My hives are better today-not gone but better. I start steroids today in prep for round 3 tomorrow. Hoping that will put an end to this.

So here's my question for the day: I am interviewing for a job. Do you tell them that you are in the middle of chemo? If yes, should you do that early in the interview, or wait until the end?

Kerri, hope you're feeling okay today. This is definitely an up and down process. Hope you have more ups than downs!

Pattysmiles · June 2013

Carol,

I would say to not say anything.

My husband was called by someone, he knows them, looking to hire him. (As in called hi, he did not apply for a job!). I told him, under NO CIRCUMSTANCES should he mention my "condition". First words out of his mouth were, "my wife has cancer and needs to go for chemo, so I will need time off". I wish I had a recording of him, he would realize how it sounded..."hire me, but I won't be there on a regular basis". Needless to say he hasn't heard a word back.

Anyhow, the hiring process can take time, you might be done with treatment by then.

If you aren't, and manage to get your foot in the door, they have the opportunity to see a good employee and can possibly work with you....you might not even miss that much, if any,work!

That's just my two cents.

Pat

kobrien · June 2013

Thanks Carol- I am feeling a bit better today.. Ate an omlet with ham & cheese- smothered with Mrs Dash & catsup.. Went down pretty good..

Have to go get my Nulesta shot in a little while.. NOT looking forward to that.. No nausea so far this morning.. Fluids going down well.. I'm sure ill be ready for a nap this afternoon.. Been sitting on my back deck in the shade all morning and its felt good!

Hopefully this will be my one and only time for the Nulesta-- it's only because my Lyme disease test came up positive again and they can't figure out if its the old infection or a new one since my dog has Lyme right now!! I got retested in chemo on Friday- but the MO doesn't want to wait for the results...

Wish me luck!!

Hope everyone's feeling well today!

Kerri

BeHereNow · June 2013

Carol, I agree that disclosing about your cancer treatment is premature. You only need to disclose sickness if you miss a day of work. Even then, I don't think you're obligated to disclose your diagnosis.

At the same time, some employers will hire a qualified candidate even with BC. The treatment is a finite time period and they understand that.

I know it's a tough call. Do you have any friends in HR who could help you sort through the pros and cons?

Kerri-here's hoping your neulasta shot has minimal SEs. I've been fine with mine. Only mild SEs-- very manageable. I take Claritin daily and will til treatment is done.

indenial · June 2013

Kerri, congrats on making it through the first infusion! Hope you aren't feeling too awful today.

Carol, glad the hives are improving! I would probably not tall them you are in the middle of chemo until you are further along in the hiring process. Depending on your treatment plan (number of rounds of chemo, whether you'll go on to rads) you might not have to tell them at all, but if you think you will need lots of time off then you might want to mention it on a second/third interview. If you do decide to bring it up at any point, make sure you present yourself in a way that gives them confidence that it won't negatively affect your job performance, that you have a plan to make up for missed time, etc.

Two questions for you all:

1. How do you know when to call your doctor about issues/side effects? This is something I've been struggling with since the beginning, and I tend to err on the side of not calling, mostly because weird things seem to always happen on the weekends when I'd have to call the on-call doc. I guess mostly I only call if it seems ER-worthy. But then I have this sheet that lists things to call about and I'm just never sure. Like one is "unexplained bleeding" and I've had very very mild bleeding issues (like a bloody nose) and if I wasn't in the middle of chemo I wouldn't even think twice about these minor things but I always wonder if it's something I'm supposed to contact them about! Then I get all panicky that I'm going to wind up with some severe infection or something all because I never called when I was supposed to.

2. How do you thank all the people who are helping you through this? Do you write thank you notes? What if you have nowhere to send them, like when a big anonymous group is helping you out (i.e. someone from my church has been sending me gift cards she has collected from the congregation). I appreciate it so, so much but can't figure out to express that! Also I have a close friend who has gone above & beyond and been there for me emotionally & practically in every way, day in & day out. I really want to come up with a nice way to show my gratitude!

rockermom66 · June 2013

Indenial, I have the bloody nose thing too. I wouldn't worry about that although it is annoying!
If you have sinus issues or a lot of snot/blood (gross, I know) get a neti pot and use it, it has SAVED me!

I had Febrile Neutropenia this last round and I'm sure I had at least Neutropenia the 1st round. The nurse on call told me if my temp gets to 101 to go to the ER. I almost got up there the 1st round but not quite. I would go if you get above 100 for any reason because the Neutropenia can be really serious. My nurse didn't stress how important it was. I'm the type to lie near death in bed and not go to the ER, wish I had the first time around. I went the 2nd time around, good thing!
My nurse was blaming the Herceptin which I think is totally wrong. I'm having a talk with my onc Tuesday about that.

I have a new SE. With my job I do repetitive movements with my hands and have built up callouses. The places where I hold my instruments have started to peel and shed. I'm not sure if it's the chemo or the fact that I haven't been working that much or both.
I had cut myself on the fingertip with a razor blade and that's taking a few weeks to heal. The skin around the cut has done this same peeling thing. Not the worst SE but thought I'd post just in case someone else is dealing with that in some way.

anne11595 · June 2013

Talk about rollercoasters . I have been on one from hell this passed 10 days. First was that stubit mac truck that hit me for 5 days, than good news had a great vist with my daughter and 5 year old grandson. Short only about 24 hours but was not felling great. Then the headache from hell startef Thursday nite. By Friday could barely more it hurt so bad. Then I realized I was freezing and its 95 out side. So yes running a temp. Got to 101 dh had to make the call and of course ended in er. Blood work,chest xray,head scan ,plus a spinal tap to check for meningitis. 8 hours later got to go home. Diagnoses non specific headache-viral syndrome. Oh did I forget to tell you I went to see my regular doctor that morning. I have this small open area in my lady part the size of a pea. He gave me antibiotic plus ointment to us. What I dont get that at the er they were looking for a infection I tell them about the sore and they did not care!!! Im sorry but it is a infection that will take forever to heal no matter what. So today my head is some what better.I can walk with my eyes wide open now . Still running a low temp but I'm not going to the er. I was there for 8 hrs. Bull crap. See og tomorrow let them do what they want. Sorry about going on about this but you guys are greatfor this. But I am ok just cranky. Hope every is doing better then me. Thanks for the bending of your ears!!!!

Jen987 · June 2013

Anne- So sorry to hear about your rollercoaster. I had the same thing happen to me (headache, minus the fever) after my first infusion with the exact same tests. Ended up in the E.R. again 2 days later with a spinal fluid leak that had to be repaired. So I feel your pain. I started to feel better after 4 days. I told my husband I'm not going back to the E.R. no matter what. I was so nervous for my second infusion. I did change from getting the Neulasta shot to giving myself Neupogen instead and didn't have the killer headache or bone pain. And ironically I now have a sore in my lady parts too. What the heck is that all about? Hope you feel better soon.

April 2013 Chemo Group

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