update

[Carla]

Hi everyone:
I finished whole brain radiation friday(5 lesions revealed on CT scan in dec.), and told my husband the morning of the last treatment that I was feeling better since I wasn't having bad headaches anymore. I also told the nurse that I was encouraged by that, and she said they were encouraged too. Friday night I had a terrible headache, took medicine and went to sleep. I woke up at 6 a.m. with a throbbing headache. Took 2 mg. of decadron (which was supposed to be my last dose--weaning off the steroids), and ibruprofen. It eventually subsided. But by late afternoon it was back and got worse as the evening wore on. I eventually took another 2mg. of decadron and more pain relievers. I went to sleep and slept with my head elevated all night. I woke up this morning feeling great. No headache.
I'm not sure if I should stay on the decadron awhile longer. The dr. told me that if I had a headache, and I could control it with pain relievers, that is preferable to the steroid. But as my headache got worse last night, I was worried about swelling. A brain can only tolerate so much swelling.
Also, this last week is the only full week I had of radiation--5 treatments in a row. All other weeks were partial weeks b/c of the holidays. Could that have had something to do with the onset of headaches friday night? My husband and I got so discouraged and have tried not to think about the worst, but it is very hard. Also, I'm supposed to start teaching on thurs.--I'm signed up for 3 classes--and though I had confidence last week, after this weekend,I'm seriously doubting my ability to manage all three, mainly b/c if I have to stay on the decadron, I will continue to get weaker--mainly my legs and energy level, which is pretty low. Anyway, I just wanted to put this out there and hear your (most informative and appreciated) opinions.
Thanks for listening and God bless-
Carla

[Anonymous]

my mom was dx w mets to brain n septermber of '03. had wbr for 2 weeks. dr says that the tumors r still there but are dead tissue. but cuz they are still there there will always b swelling. therefore she is still on decadron daily, and dr says sometimes symtpns can fluctutuate cuz of the swelling. so she will be on decadron indefinately. but it works so ....

[Anonymous]

MY mom takes decadron daily - 4mg -and works too. most days doesnt feel that tired.

[karyn]

Hi Everyone

My mom called her cancer hospital yesterday and they told her to go to the emerg at her local hospital. So we went and 5 hours later they told us what we figured, that her white blood cells were low and as a result she was neutropenic. The dr there told us that we were to go home and come back if she developed a fever. When I asked about preventative measures, he said there weren't many and that they very rarely gave any sort of needles. So I am wondering what types of medicines you all take to help with increasing white blood cells. I know you mentioned different medicines before (Epo, Neupogen, Asep, etc), I am just wondering if any of these are specific to increasing white blood cells. We see her onc next week, and I would like to present the names of appropriate meds to him, instead of again listening to someone say there is not much they can do.

Thanks again

Karyn

[Lisa]

When I was taking Navelbine regularly, I had a Neulasta shot monthly for white blood cells dips. It's a very expensive shot, but insurance doesn't balk. I also took a Procrit shot about every 6 weeks for low red blood counts. These are to be expected with chemo. With Neulasta, the white blood cells will spike very high, then slowly lower during the following weeks until another is needed. I took it the same day as my chemo. Others are asked to come back the following day. Still others are given shots to self-administer at home (Neuprogen, I think). This is regular business with chemo and your Mom's onc should be on top of it. I was never given my chemo until my bloodwork came back from the lab STAT.

My opinion...do not wait until next week. Call her onc today. As it is, she is wide-open for getting infections.

Love and light,

Lisa

[celina]

karyn,
Are they holding off on her chemo until her white blood cell count improves? I've heard that some doc. are not recommending drugs for this purpose...seems like patients have to insist.
My sister just picked up her meds for red blood counts - Eprex is what it is called (I completely mispelled it before!) @ $2700 for 4 injections...unbelievable. Fortunately OHIP is paying for it.

[al]

I give Linda a shot of Neupogen every day except for chemo days. This brings her white cells high enough for chemo. Her counts are always checked before chemo. She is also on eprex once a week for red blood counts.
Regards,
Al

[Lolly]

Yes, agree with Lisa; I don't know why they're dragging their feet to treat this problem. I haven't had to receive shots for my white cell count (yet), as they've never been alarmingly low, usually hovering around the "cut-off" point of 1,000. A few times they've been 800-900, and then my chemo dose has been halved, and by the next treatment I'm back up above 1000. I am not fighting such serious mets as your mother, however; if I were I would be pushing for medication to keep the white cells up high enough for a full treatment each time. The shot I've been getting every other week for low red blood cells is Arenesp. I've had 2 doses and it seems to be finally kicking in as I've felt much stronger this past week, today I am going in for treatment and will have the usual blood work done first to determine if I'm good to go...
I hate to say this, but do you think it's an insurance issue? Perhaps they're worried the insurance won't pay for the injections, if so these issues can be addressed through preauthorization, and if indeed the insurance balks, your mom can go ahead with the necessary treatment and duke it out later with insurance through the appeal process...

[michele u]

Karyn,
Where are you from? I'm a nurse and i see no reason that they are not giving her neupogen. I thought that was standard of care for chemo patients, when your white count goes down you get something to help increase it. Maybe her dr has another reason for not giving it, but most everyone i talk to has had it. When your white count goes really low you are more suseptible to infections and viruses. I would ask them again their reasoning for not giving something that is available!

[Barbara]

Karyn:

I was on dose dense chemo - every two weeks and had a Neulasta injection every time I received chemo and I was able to stay on schedule which increases the effectiveness of chemo. My insurance paid 100% of this cost and Neulasta is
expensive.

[cHRISTINE]

Karyn. Neulasta is the new form of Neupogen to raise white blood cells faster and for a longer time. Just ask the Onc to try to keep an eye on this so she doesn't miss her tx. I don't understand why he didn't offer you this drug.
If you can call and get some answers from the Onc.

[al]

My understanding is that if you are on a weekly chemo regime, neulasta is not for you because of its extended action. That's where neupogen is preferable.
Al

[Kaye]

Karen, Neupogen is one of the medications that does that. I was actually given it by my health care facility but they were not using it the way it was intended. I had to go to a specialist who wrote a letter to my health care facility in which he specified how it was supposed to be used. I am not sure they would have listened to the request if I had made it to them without the letter from that specialist. However, that doesn't mean it won't hurt to try. You can check out neutropenia and chemotherapy along with neupogen and bring the facts to the dr. Best of luck!