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Port Numbing Cream & Blood Tests & Gemzar

Susan523's picture
Susan523
Posts: 235
Joined: Oct 2007

Hello friends,

Although I have had a port for almost 3 years now, I only recently was given the "Numbing Cream" (Lidocaine/Prilocaine) to use before treatments or flushes to numb the area before they insert the thumb-tack sized needle!

Well, the reason I'm writing, is to tell you all that this cream works GREAT FOR BLOOD DRAWS! You can put it on your arm an hour before going to the lab, and it works wonders. I
don't feel a thing; which is nice when you reach the point that your veins start breaking down. And drink lots of water before you go, too. My phlebotomist told me that trick; it helps plump up the fluids & blood, making it easier to get.

Now I'm off to my 1st of my last treatments for Round 3. I'm on Gemzar alone; I asked to try it, and it was slow getting my numbers down, but it has. I'm at 18 right now; and I have today's treatment, then 1 more next week. I had 6 cycles; each a 3-week cycle, with chemo 2 weeks in a row, then 1 week off. (I'm stage 3c). I was dx May 2006, and this is my 3rd bout with chemo. The 2nd bout was IP Chemo (Cisplatin/Carbo), and the remission wasn't very long.
I'm hoping this one will be over 6 months atleast... What we're all striving for, I guess.

God Bless & I'm praying for all xoxo

seably's picture
seably
Posts: 29
Joined: Jun 2009

Hi Susan523

I have some Lidocain cream leftover from previous problems. I will be using it this Friday for my blood draw & on my ports next week for chemo.

Anything that helps us get through this is a blessing.

Thanks again,
Stacey

Susan523's picture
Susan523
Posts: 235
Joined: Oct 2007

I just wonder why our doctors don't offer this to us??
At least we know now!! Good luck on Friday, Stacey xoxo

Susan523's picture
Susan523
Posts: 235
Joined: Oct 2007

~be sure to apply that cream at least an HOUR before your appointments. Good luck!!

seably's picture
seably
Posts: 29
Joined: Jun 2009

Susan,
Thanks for the reminder...will do!
Stacey

LPack's picture
LPack
Posts: 658
Joined: Oct 2008

Never knew you could numb the area before they access the port. So far mine has never been a "pain". =)

Susan, your number is great. Hope your remission is l o n g.

Love,
Libby

Susan523's picture
Susan523
Posts: 235
Joined: Oct 2007

I hope we ALL find remission somehow.
It's a tough job we've been given! xoxo

kayandok
Posts: 1223
Joined: Jun 2008

Way to go Susan on your response to the gemzar! How do you feel?
Hugs,
Kathleen

Susan523's picture
Susan523
Posts: 235
Joined: Oct 2007

Well, Kathleen, I still have my hair, and that is very nice;
but I have lots of nausea & vomiting (but most patients don't
have that problem with Gemzar...of course I have to be
different!); and the neuropathy has just started to bother me
lately. Mostly fatigue, yet I have insomnia!? I can't ever
shut off my mind to sleep. I also have diarrhea one minute,
and constipated the next. No rhyme or reason that I can figure
out. Gemzar has also taken longer to bring down my CA than the
others I have had (Taxol/carbo & IP Cisplatin/Taxol), but I knew
that going in, that it could take longer to work, or not work at
all without the addition of Carbo. I had asked my Dr. to let me
try "Gemzar Alone", and he said 'okay, but we may have to add to
it if it isn't effective'. So I consider myself pretty lucky that
it's worked so far.
Take care, Kathleen xoxo

saundra's picture
saundra
Posts: 1390
Joined: Mar 2007

Wondered about you, Susan. I pray the Gemzar is the wonder drug for you. How did you do with the side effects? Saundra

Susan523's picture
Susan523
Posts: 235
Joined: Oct 2007

Hi, Saundra!

Although I haven't posted anything lately, I do check in.
And thank you for your prayers, too. I hope you're doing
well.

I'm hanging in there with the side effects; the main one
being the Nausea/Vomiting; but Zofran really helps that
(but it was quite a struggle with the insurance company
to cover it. They finally did). Oh! And my kidney function
is acting up, so I'm told to drink more water. It's just so
hard to drink water when you're nauseaous. I use Club Soda
a lot. It helps! Also compazine & ativan... the usuals.

I did have to have a blood transfusion after cycle #4, and
now my bladder has some pain, so they took a urine sample
yesterday.

My CA is almost to the 'normal' level. My lab uses a range
of 3.5-17.0 as 'normal', and I am at 18.0 Grrr... that 1
point!! lol

Good hearing from you. Take care!
~Susan xoxo

BonnieR's picture
BonnieR
Posts: 1549
Joined: Jan 2004

Dear Susan, sorry to hear the gemzar is knocking you down, maybe ask for aloxi instead of zofran(it is given IV before the chemo) it really works great for nausea and so does the 3 day emend. Just a couple suggestions. That is great news being at 18 ... you go girl! Our clinic uses the number 25 as a top number but then that numbers changes with each individual's factors too.

Pray the transfusion gives an extra boost of energy. Hugs N Prayers Bonnie

lnyeholt's picture
lnyeholt
Posts: 65
Joined: Apr 2009

Hi Susan:

I'm on carbo/taxol and I also have problems with extreme fatigue and insomnia, especially right after chemo. Prior to starting chemo my oncologist prescribed Emend, Zofran, & Compazine for nausea but also lorazapam (Valium) which not only has the benefit of reducing nausea but helps turn off my overactive brain when I'm almost too fatigued to sleep. I haven't heard anyone else mention Valium as an anti-nausea med but it does seem to work.

My N.P. calls Emend a "miracle" drug. It is! I really need little else to control nausea other than the valium before I go to bed. Unfortunately, it doesn't seem to be availale in generic yet, although all the other meds I take are. If your insurance company is fighting you on Zofran it might be difficult to get Emend. If your doctor thinks would work for you, it's definitely worth getting your medical professionals involved in tryihg to get it for you.

Fortunately, I haven't had any problems with my scrips being paid for by insurance. Reading about all the problems people have with health insurance and coverage of needed treatment and medication is just infuriating - but that's a whole other topic!

Lyn

Susan523's picture
Susan523
Posts: 235
Joined: Oct 2007

Hello Lyn, and thank your for the advice on Valium & Emend. I will certainly be asking my Dr. about it. Right now I have Xanax; it sometimes helps me sleep, and other times it doesn't. It also helps if I have a lot of anxiety during the day; but it'd be nice to use something that also helps the nausea!

I also have Compazine & Ativan; but the dissolving Zofran works so quickly, I like it better for nausea (plus it's hard to swallow a pill when you're about to be sick!) Then I eat popsicles to get rid of the lousy taste it leaves in my mouth...

Good luck with your treatments, and thank you for the info. Every little bit we learn helps a whole lot!

~Susan xoxo

Susan523's picture
Susan523
Posts: 235
Joined: Oct 2007

How nice to hear from you. Thank you for the hugs n prayers; and I'm sending them right back :-)

And thank you for the suggestion of Aloxi. I've never heard of it; but am writing it down in my notebook (I keep notes on all of my appointments, and write down future questions for the Dr). I'll ask my Dr. about it at my next appointment; but I'm happy to say that I won't see him for 3 months. I just have that 1 last treatment next Tuesday, but don't see the Dr.

Interesting new photo you have!! Fun!

You take care xoxo

kayandok
Posts: 1223
Joined: Jun 2008

Hi again, just curious about your CA125. You mentioned that it is within normal range. Is that a good number for you? Will your doc schedule a scan for you now? I pray that you can be NED for a long time.

I just finished the gemzar/cisplatin for 6 cycles. My CA125 seems to have leveled off at 18. I would really like to do two more cycles. Although I had extreme nausea and had to be hospitalized for 4 days every cycle, my blood came back to normal every time and I received the chemo every 21 days on time. My Japanese doc thinks that getting two more doses would only make my body weaker and not do anything for the remaining cancer cells. I still am waiting to hear back from my US doc. My normal range is 5 -8, so I am pretty convinced that I have some remaining cells. I do have some symptoms too but not sure if it is adhesions or tumors.....

Anyway, I am in the "info gathering" stage and since you are in a very similar place to me I was wondering what criteria your doc uses to decide to stop the chemo? Sometimes I feel a bit isolated and although my Japanese doc claims he has all the same info and basically is giving me the same treatment I would receive as if I were in the US, I always tend to question everything.

I look forward to hearing your input,
Kathleen:)

BonnieR's picture
BonnieR
Posts: 1549
Joined: Jan 2004

Dearest Kathleen,

I have a tendency to agree with your docs.. but that comes from being on chemo for such a long time. I wonder if you couldn't do one of the hormone blockers like Saundra and Sue have done? I know that is on our list to do to give me a break from chemo. For some women it does wonders, especially when they are at the place you are with your ca125 being low and no large tumors. For others like myself it sometimes can slow the tumors down.

These drugs do have their own set of side affects though. Maybe start a new post and ask your question there. I am sure you will get lots of replies.

Sending you lots of Teal Hugs N Prayers Bonnie

kayandok
Posts: 1223
Joined: Jun 2008

Yes, that is also one of the options on the table. I think femara is better for the ovca? I can get that here as long as I pay out of pocket. Can I take that with the chemo, I don't remember, or do I have to stop chemo to do that? I have a high % for for the Estrogen receptor on my molecular blueprint from last month. Doc says I should at least try it for a few months......

Having so many options is a bit stressful. I just wish there was a "set treatment". I know that is so pie-in-the-sky.... All of us being an individual and our cancer being so individualistic makes things so complicated, doesn't it?

I will think about what subject the new post topic could be. Maybe "how do I decide the next step?" or "how do I know when enough chemo is enough?" or "what is palliative care?" "how do I prepare for leaving my kids when I don't know if I have 6 months or 6 years?" Hmmmmm they are all good questions to hear responses on.... I will process a bit more today.

Thanks for listening...

Your calm and peaceful mind has been a strength to me.
Hugs,
Kathleen:)

saundra's picture
saundra
Posts: 1390
Joined: Mar 2007

I have been on Femara since last October. It slowed the rise in CA125 but did not stop it. I have had nine months with no chemo for which I am grateful. The side effects I had were numerous hot flashes that have slowed in the last couple of months and loss of bone density. I had to start Fosamax again a couple of months ago. It is expensive here in the States...$10 a pill taken every day. I think that the time off of chemo was good for my body and soul. I will find out in July what the next step will be suggested for me.
My CA 125 has now reached 166. I do not think you take it with chemo. How would you know which was working?

Hugs, Saundra

kayandok
Posts: 1223
Joined: Jun 2008

Yes, that is also one of the options on the table. I think femara is better for the ovca? I can get that here as long as I pay out of pocket. Can I take that with the chemo, I don't remember, or do I have to stop chemo to do that? I have a high % for for the Estrogen receptor on my molecular blueprint from last month. Doc says I should at least try it for a few months......

Having so many options is a bit stressful. I just wish there was a "set treatment". I know that is so pie-in-the-sky.... All of us being an individual and our cancer being so individualistic makes things so complicated, doesn't it?

I will think about what subject the new post topic could be. Maybe "how do I decide the next step?" or "how do I know when enough chemo is enough?" or "what is palliative care?" "how do I prepare for leaving my kids when I don't know if I have 6 months or 6 years?" Hmmmmm they are all good questions to hear responses on.... I will process a bit more today.

Thanks for listening...

Your calm and peaceful mind has been a strength to me.
Hugs,
Kathleen:)

Susan523's picture
Susan523
Posts: 235
Joined: Oct 2007

Well, my CA is still at 18.0, and with the lab I use, the "normal" range is 3.5-17.0,
so I'm not in the 'normal' range quite yet...
I am hoping that my last 2 treatments will bring it down into the "normal" range, as
low as possible. My last remissions my CA hovered around 4-6. But I don't know if
Gemzar will get it that low.

No, my Dr. won't schedule a CT Scan now. If I have symptoms of recurrence, then he would schedule that. He said that after I finish up this last chemo, we will "monitor you for a while". So that means 3-month CA125 & pelvic/rectal exam. If the CA is stable, then I go back again 3 months later. I've never gotten to go 6months or a year yet, since diagnosis.

It sounds like your Dr. is on top of everything. I understand how you must feel, being so far away from the US; Hang in there, and we'll be praying for you and sending good thoughts your way~
~Susan xoxo

kayandok
Posts: 1223
Joined: Jun 2008

Thanks Susan, for your response. I was a bit confused, I think. I understood you to say you were finishing up your 6th and last cycle. But, you will be doing 8? Sorry for all the questions....

Warm hugs,
kathleen

Susan523's picture
Susan523
Posts: 235
Joined: Oct 2007

My Dear Kathleen:

Please don't apologize; that's why we're here. Sad to meet this way, but we're all in this together, in a way.

I am ending my 3rd set of chemotherapy; this last one being Gemzar alone. The treatment was in 3-week cycles: Chemo on Day 1 and Day 8, then a week off. So on week 4 I would begin a "cylc" again of Day 1, day 8, and a week off. This was done for 6 cycles. Of course I had the pleasure of reporting for blood draws weekly. (We all get tired of that, to be sure).

Rather than thinking about saying "good-bye" (which I have also done), try to focus on something else; something more positive. Maybe you can try making a Vision Board. What I did
is I got a large poster board from Wal-Mart, and just started going through magazines and finding the things I like. Not only photos, but words. Cut them out and paste them on your future. I have a 3-dimensional butterfly on there; lots of pictures of my favorite foods, inspiring words, favorite things to do (cruise ship!), things like that. Just sit with a pile of old magazines, scissors, and a glue stick, and get creative!! It's really lots of fun. In fact, I may work on mine some more today~ it's been a while and needs a few new things on it. It's getting more crowded on there now; like a 'collage'.

Let me know how you're doing, and if you have any more questions. You can also reach me at dogsmom@charter.net

((hugs!))
~Susan

kayandok
Posts: 1223
Joined: Jun 2008

Thanks Susan for the story board idea. I used to do that with my English students and it was always a huge hit. I will do that this week. Sometimes I don't even realize I'm becoming negative, so thanks for the reminder.

Warm hugs,
Kathleen:)

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