Chemo preparation suggestions appreciate.

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10/23/2010 2:26pm
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Background: diagnosed 3b in 9/2008 with an upper left arm lesion. Clean scans through 11/2009. A sudden brain bleed 6/2010 turned out to be a metastatic tumor that hadn't shown on the 11/09 scans. An emergency craniotomy took care of the bleed and I had Gamma Knife Surgery 7/2010 for the primary tumor as well as one less than 4mm discovered at the same time. Full body scans done 6/2010 showed no other distant lesions.

S

Full body scans taken 9/2010 as a followup to Gamma Knife showed a new tumor on the right adrenal gland and we decided it was time for systemic therapy. We are waiting on the results of a biopsy taken 10/11/2010 and sent to France to see if I am c-kit positive and will qualify for a focused drug trial. Pathology done at the hospital (UNM Cancer Research Center) showed very sparsely scattered groups of 1 or 2 melanoma cells in the new tumor and my onc and I have decided to proceed with a Phase II trial of Carboplatin, Paclitaxel, and Temozolomide rather than wait the additional weeks for the c-kit analysis. If I am positive, I can always move on to that treatment.

I'll be getting the first infusion this coming Monday morning and I'm wondering if any of you who have experienced chemo have any suggestions or advice, things you wish someone had told you in advance. I'll be getting two 28-day courses before we do another set of scans. The goal is to find something this tumor will respond to, get it reduced in size, and then remove it surgically. I will have as many as six courses if we are seeing any improvement.

I have a great local Healing Team of a Dr of Chinese Medicine/Acupuncturist who is also an RN who has extensive experience with treating chemo side effects using needles. I also have a Homeopathic Doctor with advanced study and certification for using diet and supplements to assist with the side effects of chemo.

Some good news - a brain MRI done last Saturday showed the primary brain tumor (2 by3 centimeters originally) has reduced by 50% and the small one has stayed stable at less than 4mm and my onc feels it is most likely just a bit of scar tissue now.

Is there anything you found helpful to do before infusion? Eat or not eat? If eat, what was helpful? Anything that you brought that helped you to be more comfortable during a three hour infusion? How about the best things you found to do after treatment? Anything you can think of that you wish you had known will be greatly appreciate.

Thanks in advance - Carmon in NM

Carmon in NM: Stage IIIB 9/2008; Stage IV 6/2010 with brain and adrenal mets; NED since 4/13/2011. It’s not what happens to you, but how you react to it that matters. ~ Epictetus

I haven't had that some group of chemos but have had some chemo through biochem and taken temador.  My main problems on chemo are dry mouth / mouth sores.  A good remedy is to swish baking soda & water around in your mouth several times a day.  I also have had itchy eyelids / peeling, so it's good to have some petroleum jelly on hand and also eye moisture drops. 

I definitely recommend staying ahead of nasuea when you can.  I have always done well taking both phenergren and zofran.  But there are other meds and some work best for some people - can be a bit of trial & error.

Each patient is so individual.  Hopefully it won't be too bad for you and you'll get some good response.

Love,

Amy

I continue to praise God in this storm, counting my blessings & enjoying my "bonus time!"

A good post  that I found in the archive (from 2004, but I think most of it still applies):

http://community.melanoma.org/cgi-bin/mpip/dbforum.pl?header=archive&db=main_bb&post=241543

You might purchase a product made for seasickness.  It is a band that you put on your wrist.  There is a dot in the center that might help you center.

When I did chemo, I received an injection of neulasta that made me feel better.  You might ask your doctor if you can get one.  Stay on top of your anti-nausea pills that I hope are part of the plan.

People respond differently.  When I did 2 cycles 3 weeks apart, I was tired the first week, but started to return to all activities the second week.  During the first week I did not feel balanced, and had trouble maintaining eye contact, especially with people moved around.  I never had nausea, and so I hope you will not either.

Carmon,

My husband did a very similar treatment.  His was Carboplatin, Abraxane & Avastin.  My husband has always had trouble with vomitting so they gave him a drug called Emend with this treatment and it worked great.  With Emend, they give you a dose via IV with the treatment and then you fill a prescription for 2 pills.  You take a pill on day 2 and day 3.  It works for the entire week.  I can't recommend this drug enough but it is very expensive and some insurances won't cover it. 

Thank you so much everyone for the good advice and suggestion, especially the link to the old discussion.

I had my first infusion today and other than taking much longer than they told me it would I had no problems. They did an hour of 'pre-med' which was benedril, dex and a nausea medication before the actual chemo infusion to make sure I didn't have an allergic reaction and for nausea. Then I am on a pretty tight schedule of neausea med with dex every 8 hours for the first three days and then one hour before I take the temodar.

The chemo nurse said the worst side effects (body pain and chills) would occur on the second or third day and would only last about one day. Hair loss will start on day 14 and my white cells will be at their lowest in two weeks and then will start to climb again after that. During that low time is when I have to be most careful about infection.

I did eat a small breakfast of steel cut oatmeal several hours before I went. I don't know if it made a difference or not, but I didn't get hungry!

Again thank you all so much and I'll let you know how this drug combo works for me! Carmon

Carmon in NM: Stage IIIB 9/2008; Stage IV 6/2010 with brain and adrenal mets; NED since 4/13/2011.
It’s not what happens to you, but how you react to it that matters. ~ Epictetus