Starting Chemo July 2013

JeriGrace

This first week has not been fun! Besides the bone pain and nausea I am now in the hospital for an infection and a "dangerously low" white blood count. I developed a fever yesterday so I called the weekend line and they sent me to the ER for some blood tests. I ended up staying overnight and today they recommended one more day. My counts are coming up but aren't quite there yet. They did give me morphine during the night so I got a little sleep - two hours at a time. I don't know what I could have done differently but sure hope this doesn't happen again. I can't believe how fast your WBC can crash!



Good luck to all of you wherever you are in your cycles. And try to stay out of the hospital!

Mellie289

{{{JeriGrace}}} Big hugs to you and feel better soon!

angelanature

Sorry to hear about what happened Jerigrace,how scary!!Im going in for my counts tomorrow,first chemo they were ok,but this time i feel so exhausted and weak.What kind of infection? or r u neutropenic and thats why they admitted u? This is one of my fears,I hate the hospital,i cant even imagine,hang in there girl,my thoughts r with you. Angela

JeriGrace

They did say I was neutropenic. I wasn't so familiar with those numbers but today I was up to 400 and they will let you go home at 500. I think I have a UTI. They are treating with a broad-spectrum antibiotic so it will take care of whatever caused the fever.



In case any of you get sent to the ER, I had read somewhere on a discussion board to request a private waiting area. I told them I was immunosuppressed and they put me in a separate area.

Vilia

Did anyone else find they wanted to eat like a horse after chemo ?  I'm being careful to stick to my usual intake but, gees, I could eat us out of house and home right now, despite the fact I can barely taste anything properly!  I was told it's the steroids, but I finished them on Saturday morning!

daisy72

Villa, YES! Thought again I was the only one! A friend of mine told me today she gained 50 lbs from chemo a few years ago! I'm trying not to eat a lot but OMG I'm starving, even after I eat a meal..lol  I figured it was ok to eat, since on my bad days I barely eat a few bites but since she told me that, I'm thinking again about that bowl of ice cream lol  

candi07

JeriGrace, I'm sorry to hear you are in the hospital. Prayer that your wbc numbers rise so you can go home. Sending warm hugs to you .

Rambo50

Hugs and prayers, JeriGrace!!!

Rest well and hang in there </p>

puppymama09

Peace, I started chemo on Wednesday, hope yours goes well today, I will be thinking of you.

I had my port put in today, went smoothly, feels fine except up in my neck it feels really weird, like I can feel a tube in there, I didn't thimk I would feel anything up there, I thought the tube went down.  

I have been feeling better but not sure if SE are getting better or if it is the vicodin I have been taking, which is really helping a lot,  I feel almost normal at times. I am 6 days out so hopefully I wil just start feeling better.

I have not had the problem hunger, I have lost 5 lbs already.

JeriG, so sorry you have ended up in the hospital, did you get the nuelasta shot?  Its scary how fast something can happen, will be thinking of you!

((HUGS)) to everyone!

soriya123

I had port done last Friday, still feel uncomfortale...can't wait till settle in. I will have my 2nd chemo next Wednesday, I hope my WBC is okay. Hang in there ladies. (((Hugs)))

Rambo50

Puppymama and Soriya, the port does get better, at least the neck part! I know what you mean about the unexpected sensations! Mine just hurts when I stretch too far across my chest, and of course I have difficulty sleeping on that side (the other one too since my mx surgery - no wonder I'm not sleeping well



Good luck to all you 2nd rounders this week!!! Soriya, I know it's you and me tomorrow, and Sheila on Thursday. Anyone else???



I've had 3 surprisingly good days and am praying my counts are high enough for chemo. Went to set up my new office today - official job start next Monday with several potentially awkward large meetings to follow... I'm most nervous how to handle those, especially if I experience any sudden SEs! Looks like my teaching schedule might actually work this semester



Is anyone else doing PT for range of motion/lymphedema? I have my first session this morning!



{(Hugs)} to all you firecrackers


~Lynn

Nocompromises2013

JeriGrace - hope they have discharged you now and you feel good



Rambo -hopefully I have #2 on Friday if my WBCs are up

Got Buzz cut to #4 last Friday, now totally shaved and using headgear will use my wig for work tmrw. And yes you guessed it my 4th round of golf for cycle 1 yay

Good to hear your teaching schedule will work out and that you have had 3 good days



Stay strong everyone. NC x

Anonymous

Hello all,  Please weigh in on these meds as I want to avoid the massive swelling and weight gain I had first time around:  

-I have Emend 80 mg capsule and have been told to take it for 2 days beginning day of chemo. But wonder of that isn't this something that I should be taking the day before as some have been told to. this is for nausea.

- I have Prochlorperazine Mal 10 mg tablet for use every 6 hours for nausea as needed.  Not sure why as I have the Emend?

 

-I have Ondansetron HCL 8 mg tablets which I think is Zofran but does this cause swelling?  The doctor said that she would avoid medicines that caused me significant swelling in the past so I'll have to check with the nurse as this may have been one and this is a different nurse. 

 

-I have Dexamethasone 4 mg tablets.  Is this Decadron?  This causes swelling doesn't it? Itis a steroid so swelling and overeating.

 

Does anyone have any ideas? suggestions?

 

V

Poconos3

Ah the dream... I did one round of chemo last November, which I had a highly allergic reaction to, was bed ridden for nearly three weeks and never did it again.  I then completed my radiation from DEC through Feb, while receiving herceptin treatments every three weeks until April when I got a bad muga score 43.1 and had to stop herceptin for a time.  I decided to go with my spirit/gut and get a second opinion as the cancer treatment center in my area has a terrible reputation and I was pretty unhappy with my treatment thus far.  The new center's oncologist was appalled that my ovaries were not taken out (I'm HER2 positive) and they are being removed (oohphrectomy) on Tuesday.  He then "revisited" the chemo issue saying that the herceptin will NOT work unless it is given in conjunction with a chemo drug.  He said the chemo that I was given was antiquated and that his team would not be using it; he also said he would give me a much lower dose and more steroids in the beginning.  I told him I would give him a chance.  I also had a dream the night before my scheduled appointment; in the dream, the cancer metastasized to my lungs...when he was speaking to me in the office...he said we need to do the chemo as we don't want to have it metastasize to places like your lungs!  OK OK I'm doing chemo again:/  ...and my hair just grew back a couple of inches:/  sighs

daisy72

Poconos, It sounds like you have a good doctor, and he will watch you very careful. I hope all goes well for you! Let us know. 

My next round is Thursday (2/4), so tomorrow I start the dreaded steroids that makes me swell. I'm much more prepared this time, I know what to expect. They did give me extra nausea med's. and nerve medication. The crying and crying was terrible, especially for my poor husband and kids, they didn't know how to help me and I didn't know why I cried so much. Guess It was 'why me' thing, I don't know. I work for Hospice and when I got diagnosed I had 2 patients that I saw several times a week with breast cancer, so I went into their homes listening to the families talk about this horrible disease and I couldn't say 'I was just diagnosed too'. I had to be the professional and do my job, while I was scared out of my mind. Thinking has it spread? Will I be a Hospice patient soon? My mind went crazy. My doctor said I had the most stressful job there is and I needed to take a leave as soon as possible, after I showed up at her office crying like a baby in between seeing my patients 3 days after I was diagnosed. I LOVE my job though. I love helping family's and patients during the end of life process. I will go back as soon as I able. My oncologist has taken me out for 6 months, giving me time for treatment and healing. 

So I'm ready to get all this behind me...I'm ready to face the side effects better this time around! Round 2..here I come!

lark

So tired of the constant headache. Its not a terrible ache, just enough to make me feel like not watching tv, read or even be on the computer. Tylenol helps some, but it just never completely goes away.



Got the head shaved yesterday. It was upsetting, but my daughter was a good support. The problem is my wig makes my headache worse! I've loosened it as far as I can, but can't stand to wear the thing! I don't mind wearing scarves inside the house, but would rather be able to wear the wig when I go out. Don't want to become a hermit, but I didn't even go for my walk yesterday because I didn't want to face the neighbors without a wig. Stupid, I know.



Anyone else having vision problems? My dr says its not unusual and should go away after chemo. Hope so. I already use reading glasses and now its worse. Dr said just to get cheap stronger readers, not to have eye exam until chemo is done.



HVV - I'm given Emmend, Aloxi and Decadron through the IV before chemo. The first two are for nausea, I think they just work differently, so together they're more effective.

Sorry I can't answer your questions. So far, haven't had any swelling.



Poconos- glad you went for another opinion. I'm in PA also and went to a top doc at Univ of Pa Hosp for a 3rd opinion when there was some disagreement between my surgeon and MO. I know it's inconvenient, but make sure you're getting the treatment you deserve. Some people have talked about their cases being reviewed by a panel of docs. You might want to ask your doc if he can do that. Maybe someone else on here can chime in if they've done that. Good luck with the surgery and new treatment plan.

Nocompromises2013

HVV

I am a pharmacist

1. Emend 80mg are supposed to be taken on day 2 and 3 of chemo

Usually a 125mg tablet should be given on day 1 OR 115mg prior to chemo by I/V - which they would more likely do

2. Prochlorperazine is given to you to use as needed for breakthrough nausea that the emend fails to mask, USE it if nausea lasts longer than a couple of minutes

3. Yes ondansetron is zofran an excellent anti emetic. Swelling is not listed as a side effect in my AMH reference book

4. Dexamethasone is decadron. It is used usually day b4, day of, also I/V on chemo day and for day 2. Usually to counteract allergies to chemo drugs ( suppresses bodys response ) and also as anti nausea also

Steroids usually cause water retention when used for LONG periods ( months ) Usually moon faces etc. use for 2-4 days should not cause water retention or swelling there are other steroids such as fludrocortisone or prednisolone which would have stronger effects.

Hope this helps.

NC.

angelanature

Hi All,Lark,I know how u feel about wearing ur wig,only my family has seen me without it,my neighbor said she liked my new color,(the wigs stawberry blonde and im a redhead)and i just smiled.My hubby hasnt even seen me without the scarf,he said he's too scared. But the headaches r sooo annoying and r worse with the wig. My onco gave my hydrocodiene but i don't want to become addicted to that stuff so tylenol(though not great)is somewhat working.I think the headaches r a se of chemo,but i"m not sure. I suffered from migraines as a child but they went away as i entered puberty,maybe its a hormonal thing? Anyone else getting headaches that dont go away?Daisy,r u a nurse,I had to go on disability because I'm a pediatric homecare nurse and my doc said he was afraid of the stress and my lowered immune system,i miss it soo much but our health is most important now.Best wishes for round 2.Jerigrace thinking of u,keep hanging in there girl. Angela

bikergirl

Jerigrace-

Hope you are feeling better soon!  ((HUGS)).

RealityCheck

Hi Ladies,

I am beginning to lose the hair on my head. It started yesterday morning day 11 after first chemo treatment. Here is my dilemma. I went to the American Cancer Society Resource Center at our local Cancer Center for a free wig as I cannot afford one otherwise, after I saw my Oncologist and discussed treatment a month ago.  I found one the first visit but later decided it was just too dark for my skin color and I returned it. I went back twice to possibly get some help from a volunteer about ordering a wig that would work for me from the ACC but each time I went back no one was there and wouldn't be til the following week. All of this happened before my hair started falling out as I was trying to prepare for the inevitable. Now that it is here, no one is available again at the resource center to help me get a wig and I am not a scarf or hat person. I am to the point of no return on emotions for this one. I just want to cover my head with a pretty wig close to my style and color so I don't advertise I am going through chemo as I am just not ready to do that yet. I don't want the wigs they have available at the resource center as they are just too short, gray in color, white in color and short. I don't want a short one as I have longer hair. Can anyone help point me in the right direction to get a wig at little or no cost? Yes I have health insurance. Thanking you in advance. xoxoxxo

GraceB1

RealityCheck- Your Onc can write a script for you for a cranial prosthesis (i.e. wig) and your insurance should cover it. I'm getting my second dose on Fri. - hoping my blood counts are high enough -  and have lost about half my hair. I have a wig ready but am not ready to start wearing it yet. I need to get some sleep caps as I find my head getting cold in the middle of the night.

RealityCheck

Thank you Grace!! I will call Oncologist today.

Vilia

RealityCheck, my insurance doesn't cover wigs, but I found a salon that had some free wigs ... ones that people had returned after chemo.  They were much nicer than the ones at ACS.  I found out about them through my physical therapist, who specifically works with breast cancer patients.  If you find your insurance won't pay, it might be worth calling around to local salons as well as anyone that works with breast cancer patients.  The Susan Komen site offers local places to check out for various kinds of help, including free house-cleaning, although I found it hard to find through the site, it came up when I googled it.  Try googling breast cancer resources for your area.

Mellie289

Day 6 and starting to feel a little better! My throat isn't as sore, I feel a little peppier and best of all, I woke up without my belly looking distended like I'm 5 months preggo! I feel like I can deal with the low grade headache and sporadic shooting pains today and maybe do something more than sitting on the couch watching TV.

I definitely feel like I got off lucky this first round compared to some of you ladies. JeriGrace - I hope you're back in the comfort of your home. 

I should be in nadir now and I'll get blood drawn tomorrow and see my onc Thursday for my WBC and followup.

Regarding wigs - I got a script from my onc for a cranial prosthesis, but called my insurance to check up on it. They have a list of acceptable providers for prosthetics and orthotics for whom they will reimburse up to $350 (I have to pay 20% with my plan). The list they gave me has hardly any providers for wigs (mostly limbs, etc.) and none of them are very close to home. It's like they are trying to make it difficult to get the wig. I would definitely check with your insurance rules before going out and getting the wig with the onc's prescription so they don't refuse reimbursement if you go to a shop that isn't approved.

TwoHobbies

Lark and Angela, I found a lot of my headaches was sinus pressure.  The cytoxan can cause this.  I got a prescription for nasonex and this helped a lot the second time. 

JeriGrace I'm so sorry you ended up in the hospital.  I also developed a UTI but it seems I was able to catch it early, fingers crossed.  I hope you are on the mend and feeling better.

Vilia I also went through a period week 2 when I'm just starved and can't seem to eat enough.  Went up about 5 lbs but I've been better for a couple of days and down about 2.5 again. 

Poconos I'm glad you found a new doctor who has some ideas on how to get you through treatment and we'll be hoping for success for you.

Realitycheck if it turns out your insurance does not cover a wig, TLC direct has more reasonably priced wigs than the shops or other wig websites, although not quite as much variety. 

I'm in for another treatment on Thursday.  Have to get my pre-chemo chores done - pick up steroid prescription, stock up on groceries and get gas.  I'm getting used to the routine!

angelanature

Hi everyone,Realitycheck thats terrible about the wig situation.Its bad enough we have to lose our hair on top of all the other se we r suffering from. My sister in laws family member owns a salon specializing in hair loss and all i wanted was a wig that looked like my real hair(long,red,curly)and even with that connection the closest i got was strawberry blonde,straight,shoulder length. Its difficult and it shouldnt be,my insurance still hasnt paid the salon anything(luckily i had a family connection).Some people are strong enough to be proud or secure to be bald and beautiful,I'm not,I cant even look at myself in the mirror without something covering my head,when i start losing eyelashes and brows it will be another big blow.First we have our breasts chopped up,then a alien port stuck in us,and some gain weight (ive actually lost 15lbs)not too pretty either,and then to top it off our hair. I quess u all can hear im still pissed about this whole thing. Just hearing your wig troubles got me going,sorry for my rant.

puppymama09

Lark and Angela, I too have been having a constant headache and it is driving me crazy I have found the oxycodone is helping, I don't want to get addicted either but right now the relief is worth it. My vision has been blurred too but it has gotten better the last day or so

mcmacey

Hello All,

I had my first chemo on July 19th and they're slated for every 3 weeks (TCH).  I'm 12 days past that and feel good and normal again.  Days 5 and 6 were the worst for me.  I am so grateful to be feeling good again.  It makes me think - I can do this.  I can feel like crap for a week or so if I can have a good week or two in there too.  Also, now feel like I know what to expect more -- get that constipation nipped before it begins!

Also someone asked about vision -- mine has definitely been affected!  I don't usually need glasses to watch TV but this last week I kept reaching for them.

Hair cut was Saturday - hubby buzzed his too.  STill not losing it and onc said it would be between days 7-10.  Have a wig ready but now several clients have seen me with buzz cut and next week I'll have long hair again LOL!  Anyway, lovely support here.  Stay strong everyone.

Anna

RealityCheck

Thank you all who gave me info on wigs. As of tomorrow I am going to the Look Good Feel Good class at the Cancer Center here in my town and from what I understand they will have make up artists, wig artists, nail artists etc.. to help get you through all the beauty stuff. Free wigs will be given from salons to try on and you can keep if you want. I called the Cancer Center to get a prescription for my wig and found out all this wonderful information and then I come back here and you wonderful sweet ladies have pointed me in new directions in case I need them. Thank you from the bottom of my heart!

Ummm angelanature sweety, I can only imagine your temper and pray cancer leaves you immediately! LOL Actually I find your defense of my situation quite humbling. Thank you.

Hugs and Kisses to all and I'll be checking back often. I have my 2nd chemo treatment coming up on August 8th. Is the second worse than the first as far as side effects? xoxxoxo

JeriGrace

Hey, Firecrackers! So glad to be writing this from my own couch. I was discharged this afternoon and I'm so thankful for my shower and my own bed where no one will wake me up to take my vitals. I am taking an antibiotic (Cipro) for what was identified as a UTI but otherwise I am cleared for normal activity. My neutrophil numbers rebounded as fast as they crashed - they were at 100 when I was admitted Sunday, then up to 400 yesterday, then 6000 today!



Here are a few things I learned and a few questions I still have:

*Neutropenia (my diagnosis) is not common in cancer patients. My doctor says he only sees it in about 10% of his patients but I have also seen numbers of up to 1 in 3. He also said he sees it more during week 2 of chemo than week 1.

*I'm glad I followed his directions to call with any fever over 100. If I had waited until Monday morning this may have been much more serious.

*What part did Neulasta play in this? Initially I expressed disappointment that I had gone through the pain and expense of Neulasta to build my WBC and still had this result. However one of the ER docs said it would also help build it up quicker too. So maybe it had a part in that huge change in neutrophil numbers today.

*Still not sure why I had so much Neulasta pain. I took the Claritin the day of and 5 days after. I was cheap though and got the Target generic. It had the same active ingredient. What do you think, nocompromises? I also wonder if that pain might have kept me from recognizing the UTI. Plus I was taking hydrocondone with acetaminophen for the pain. I didn't register a fever until I stopped taking that.

*My MO has already said that he will be changing my chemo. Not sure what that means yet. (He said I'd still be taking the Neulasta though!)

*i kept asking for meds for my headache in the hospital. But I have had a continual headache since chemo. Now that several of you have mentioned that it's probably related to the chemo. TwoHobbies, when you said sinus that really made sense because I keep thinking this is behind my eyes and in my nose.

*I am not entirely sure how much the ER docs were communicating with my MO, at least at first. I am going to talk to my MO about this so that I understand who is making the medical decisions when I am in the hospital.



Lark, I wonder how much the headaches are related to vision issues. I had to postpone a visit with the eye doctor too because of the fuzziness.

Daisy, everyone keeps telling me to take care of myself and not worry about my job right now. I think that goes double for you. You have too much going on to be a caregiver for others right now. Although it must be so hard not to be there, this experience will add a lot more depth and understanding in the work with your patients and their families. I admire you so much for what you do. Take care of yourself. Yes, you may need a hospice someday but it won't be for this!

Rambo, although I'm trying not to think about work I am so glad to hear that you are getting ready to start the school year. I hope your next treatment goes well and your side effects are gone by the time you have those big meetings!

Poconos, I am so sorry (and also furious!) that you got such poor treatment the first time. It sounds like you're on the right track though. Stick with the people on this board, they will help you through. (That does really suck about losing your hair again.)

Angela, I just love your spirit. You keep being pissed, girl. We need some of that to fight this!

Sorry for the megapost. I just cannot thank you enough for all the hugs and support. Soldier on!