Hello NEW Member Looking for info
 

I am a caretaker sister of a newly diagnosed 54 year old HER2 breast cancer patient and she has just had her first of six scheduled chemotherapy treatments on Tuesday (June 10, 2014) of this week and today is Day 5 (Day 4? How do they count these things?) and she had a lot of blood in her urine yesterday which greatly alarmed us and we went back to center for help and they gave her 250 (cc?) of fluids of a scheduled 1000 before deciding to send us to a urologist at 4 pm on a Friday at a hospital and I'm sure you all know how that went (come back on Monday for a bladder scope/no stones) and we're having a bad enough weekend as it is with all the back and leg pain from the shot they gave her on Wednesday (from the Neulasta shot??) the day after treatment and the nausea without worrying about the fact that our mother died from bladder cancer in 2000 and I suddenly realized that maybe the cloud (the brain power in this amazing forum) can give us more insight into our issues at this point than all the doctors in doctor town.

As you can see I'm a newbie without a clue and I appreciate your patience with what I'm sure you can sense is my frustration with a system that seems - um- burdened with people in desperate need.

Thank you for your help in advance!

We are anxious and frightened.

Maureen

Re: Hello NEW Member Looking for info
 

First of all... take a deep breath!!! Your sister is lucky to have you. You didn't mention what type of chemo she is getting, they all come with a huge range of side effects. Does your oncology center have an on call person to call during off hours with questions? The neulasta shot caused me intense bone pain which lasted through my entire chemo treatment and beyond. Fortunately a few months later the pain greatly diminished.
Weekends can be tough because it seems everything shuts down...what can seem critical on a Friday somehow gets put off till Monday when "the system" starts up again!!
This forum is a great place to come with your questions because pretty much we have seen and experienced just about everything!!
Hang in there...keep a notebook handy to jot down all concerns, and take it to all appointments so you can document what treatments your sister is getting.
Best to you and your sister!!!

Re: Hello NEW Member Looking for info
 

Do you mean what kind of chemo drugs?
Taxotere
Carboplatin

Herceptin used to treat breast cancer (not a chemo drug) and Perjecta (not a chemo drug) used to treat bc spread to different parts of the body? That's what the papers say.

Pegfilgrastim biologic response modifier used to stimulate white blood cells (not a chemo therapy drug) given 24 hours after therapy.

Re: Hello NEW Member Looking for info
 

I am soon to start the same chemo mix. I received the "fine print" on side effects yesterday. Blood in the urine is definitely listed as a side effect from Carboplatin. The instructions say to call right away on that particular side effect. Since your sister has had the shot to bring her blood levels back up, that may take care of it. I would think there is an on-call number for the chemo center where you could leave a message. Look through your sister's mountain of paperwork to determine what phone number to call. I wouldn't trust most ERs to know the way to treat chemo side effects unless they consulted w/ your sister's onc. I hope I am not insulting anyone with that comment but there is just so much for any doc to know, when one doesn't deal w/ it on a regular basis and only has a few minutes to guess, I side w/ getting specialized assistance. Good luck. Thank you for being there for her and, please, keep posting. I will be following your sister shortly. If she didn't get the mountain of paperwork, I can scan and email mine to you on Monday.

Re: Hello NEW Member Looking for info
 

Suzan,
Did you say this bone pain lasts beyond the treatment periods?
She is scheduled for treatment once every three weeks.
Will it be an everyday thing or worse around the treatment times?
If it is an everyday thing - does it ever subside and what do you use to treat it?
We are using Tylenol.

We're finding we're not being told what to expect or, when we are told what to expect we are not being told the whole story. We feel like we're being led by chained hands into an ever darkening and very scary forest.

Thanks for your help!

Maureen

Re: Hello NEW Member Looking for info
 

my chemo ended in December and I was in pretty bad pain by that time (needed help getting out of a chair...etc) by springtime it was just about gone. It was pretty much an every day pain. I will say that I had just about every side effect in the book..and was down and out for most of my chemo treatment time. Herceptin was a breeze!!

Re: Hello NEW Member Looking for info
 

Thanks for your help Suzan.
She had a massage this afternoon and is sleeping now.
It's probably a small band-aid on a gaping wound but we're hoping it helps.
Any ideas out there what does help (topically)?
Maureen

Re: Hello NEW Member Looking for info
 

Hello,
I know Claritin is sometimes helpful for the bone pain. Ask your MD, I'm not sure but it may need to be taken ahead of time to be most effective. I have a friend that it worked very well for.
Take care

Re: Hello NEW Member Looking for info
 

We'll ask tomorrow about the Claritin.
Will it help AFTER the neulasta shot has been given?
I've been doing some reading and it appears recommendations are for it to be given before and then after.

On another note: bad night. First vomiting (5th day post chemo w/ chemo counted as first day) this a.m. & up and down all night trying to "walk off" discomfort. Took the nausea med and is now resting. I hope it lasts a spell. This is heartbreaking.

To any professional caregivers and administrators reading this: A call yesterday to the oncology center to ask about bone pain resulted in "Is this an emergency - if not call back Monday" WTH? How do we know what's an emergency OR NOT when we're spoon fed what might happen and what might not happen (in spite of the fact of having asked to "give it to us straight" and when a patient HAS CANCER? Isn't CANCER enough of an emergency in itself that you'd want to have someone available 24/7 (THAT MEANS WEEKENDS) in a large metropolitan city to answer questions? And how is a patient or the family supposed to know what's an emergency OR NOT after a FIRST CHEMOTHERAPY? You guys need to get some clues.

Re: Hello NEW Member Looking for info
 

Not sure how it works over there but in Australia your oncologist will deal with the side effects as you present them because each person is different and each round is different. On AC I was really bad for the first 2 rounds but then great. On weekly paclitaxel I really struggled and ended up with neuropathy and now I'm back to battling the bone pain and nausea with the Docetaxel. I'm now on celebrex for the bone pain but to be honest I think a heat pack helps just as much. Mine passes after about 10 days.

Make sure you write everything down and just run through them with the oncologist at the next visit. Their job is to help your sister through this with the least amount of side effects they can. You will find as soon as you say a symptom they will just nod and reach for their prescription pad. They have a range of ammunition ready to fire so just let them know what your sister has and I'm sure they will adjust the medication and give you some alternative meds.

I nursed my Dad through this a few years ago and I have to say being the patient now is a lot easier. I know that sounds weird but I'm not finding this as stressful as watching my Dad go through it. So it's very hard for you so hang in there. Give her lots of fluids, heat packs and keep netflix going. I enjoy the distraction of mindless TV!

Re: Hello NEW Member Looking for info
 

Hi Maureen, you are living this all right along side your sister. I'm sure she knows how lucky she is. I found a Big improvement in bone pain using Claratin morning of Neulasta and day or two after. My pain was minimal with that and only a day or two each cycle. I hope that offers her some encouragement.
Elizabeth

Re: Hello NEW Member Looking for info
 

You all are so kind.
Thank you!
She's been sleeping most of the day.
She took the Claratin and 2 Tylenol around 10 this a.m.
We called the oncology unit to ask about it and the nurse practitioner called us back and she said, "Yes, it gives some people relief. Go ahead and start her on it."
I asked why weren't we told this in the beginning before she was given the neulasta shot.
She said not everyone has pain from it?
I asked why weren't we offered this once the pain began? Why do we have to go and discover things for ourselves and bring them to you as treatment suggestions?
No answers.
This thing is puzzling me more and more.

It's around 3:30.
No pain is no pain.
Maureen

Re: Hello NEW Member Looking for info
 

Hi Maureen, I was one of the lucky one's that didn't have much pain from neulasta but the Onc may be able to prescribe something stronger (when you get to see him/her)!! I just wanted to add to take the anti nausea meds even if your sis feels she doesn't need them as its easier to prevent nausea than stop once it starts! I agree most Dr's only tell us info on a need to know basis, a good reliable source of info is www.breastcancer.org

Re: Hello NEW Member Looking for info
 

We're 15 days out on the second chemo treatment and still learning this nightmare.
My sister is having a hard time with this/today she was diagnosed with two blood clots in her jugular/clavicle near her infected port. Put on daily, self administered blood thinning shots Lovenox at $100 apiece.
Spiking fever and sores all over her body that leak pus - all being treated by MRSA fighting antibiotic at this point - waiting on MRSA result - early petrie stage looks negative.

Her 5, 6 and 7 days seem to be the really bad days in the 3 week (21 day) cycle but this second time round just when we were expecting relief in the third week (like in her first chemo experience) BAM this hits. She gets really discouraged and weepy at times. Doctor is on two week MI vacation and nurse practitioner says no need to take port out.

Lots of trouble with diarrhea throughout program and treating painful hemorrhoids. White blood cell count at 10 then 6 after 2nd treatment on July 1 then 5.9 yesterday - am I right to see trouble coming?

Re: Hello NEW Member Looking for info
 

Hi Maureen
Sorry your sister is having such difficulty. She is still in a normal range with her white blood cell count and should not get too low with the neulasta. The numbers often fluctuate.
For the hemorrhoids try wipes for sensitive skin and then apply a topical like petroleum jelly or zinc oxide. Using a little witch hazel with a cottonball on them can be soothing as well as help shrink down some of the swelling. Try Imodium for the diarrhea, max 8 per 24 hour period. If that does not help ask for a prescription for Lomotil.
Hoping her infections clear soon. A soak in Epsom salt bath may help with some weeping from the sores. Be sure to clean the tub before and after the bath and launder all towels, etc after a single use to help prevent reinfection.
Good luck and hang in there.
Lisa

Re: Hello NEW Member Looking for info
 

Maureen,
I had severe bone pain with the neulasta . My WBC always went down with the lowest at 1.2. My bone pain was so severe that I cried when they told me I had to get the neulasta. Ask for stronger pain meds Hydrocodone 10/325. Also they changed my neulasta to neupogen. It decreased my pain significantly . The neupogen shots you get one shot xs3 days. My pain went from a 20 out of 10 to a six out of ten with the neupogen.
Your sister is going through so much the last thing she needs to deal with is pain.
Tamara

Re: Hello NEW Member Looking for info
 

I had horrible pain from neulasta, hips, shoulders and collar bone. I was sure the cancer had spread to all those areas. But my infusion nurse told me to take clariton or Allegra (allergy med). I tried it I haven't had any pain since!!
I take zofran, Zantac, Claritin and Advil the day of treatment, and the 3 days proceeding and it has made a significant difference in my quality of life. I am pretty much feeling back to "normal" 24 hrs after treatment
Hope this helps. Your sis is very lucky to have you by her side!!

Re: Hello NEW Member Looking for info
 

Hi Maureen,

hope you and your sister are doing 'ok' (as far as one can at this point). Mum has just finished her 6 chemo treatments about 6 weeks ago, and the beginning was the hardest in a lot of ways.

Its such a steep learning curve, but the more you guys can figure out how to relieve the worst of her side effects - using advice from the lovely ladies here, as well as ringing for advice from the oncology nurses / oncologist etc when necessary, the easier it gets (still not nice, but less of an out of control nightmare). Hope things get better for you guys soon. I know how hard it is watching someone you love feel so awful.

Best wishes,
Miriam

Re: Hello NEW Member Looking for info
 

Maureen -

Your sister is so lucky to have you going through all this with her! I just received my fifth TCHP treatment yesterday, and have one more to go. My symptoms have not been nearly as severe as your sister's, but they have been multiple and distressing, and I've had to call in to the Cancer Center quite a few times. What I've learned is that you need to be assertive/aggressive -- always civil, but very insistent -- in regards to your care. Never feel timid or ashamed of asking questions, demanding to be seen, or requesting more meds. Most health care professionals I've encountered have been wonderful, but there are others out there -- especially when you get outside your regular cancer providers -- who can be arrogant, clueless, and rude. Claritin the day before, the day of, and a few days after helps me with bone pain. Lomotil and Immodium in tandem for the diarrhea. The discouraging thing for me is that there was no common pattern throughout my treatments; I kept getting different symptoms for varying periods of time. I used to be able to count on the first week being bad, but the next two being fine; then the bad week started creeping into two bad weeks, and one good, and I resented it! The thing is that there is an end point, and you and your sister will get to it. This is a great site for support and understanding! Wishing you strength, hope, and healing!

Re: Hello NEW Member Looking for info
 

Thanks everyone for your support!
KatherineM your words just rang so reassuringly and soundly.

We just did the third chemo treatment on Tuesday, July 22.

They had talked about reducing the dosage before the treatment but after talking with the doctor and learning that reducing under 85% is near reducing the effectiveness greatly my sister decided against it and, feeling better felt she could soldier on.

The nurse practitioner (who seems to provide the majority of the hands-on care) recognizes that my sister seems to be one of the ladies who doesn't handle this treatment "well" comparatively in the population had suggested this with the last patch of trouble (Day 10 outbreak of MRSA, infected port site, body boils and two blood clots in her jugular/clavicle veins.)

Yesterday when we went to get fluids on Day 4 (she's feeling bad) her heart rate is up to 109 (that should have been the clue to the last onset of trouble it seems to me as that showed itself abt a week before all the other symptoms) and as we're leaving after a couple hours she tells the nurse her neck is starting to hurt (again) and this time she reaches around to the back of her head to the spot where her head meets her shoulders and says, "This feels funky too."

Their response is to call the doctor and his response is to put her back on a round of antibiotics four times a day for seven days - 300 MG IC Clindamycin HCL.

This is what they treated her symptoms with the first go-round. Her first round of antibiotics ended on Tuesday. They did not feel it necessary to continue.

She had a very bad night last night - Day 4 going into Day 5 - Days 5, 6 and 7 seem to be her REALLY bad days in her 21 day cycles between chemo treatments - and this morning the neck pain seems to be alleviated but the pain at the base of her skull remains.

Anyone have any ideas what this might be? It's Saturday and we all know what that means in this industry.

:)

Maureen