More Tips (and a Shopping List) for Getting Through Chemo

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Bumping in honor of Soteria205 . . . . because she ROCKS ! !

Hi, popping in. I was posting with another member. I thought sharing the below information may be helpful to you .

The link www.needymeds.org is to a web site started by a Social Worker and a doc. It is a tricky site to use. The first page leads to a several hundred resource pages. But I think this first page, does not project the wealth that lies beneath. Be patient when following the links within the site. There are sections that are disease and drug specific. The specific page then links to lists of organizations that provide monetary or other types of assistance.

Register first and do the request for assistances form. Reason: the request for assistance form is filed. If you apply to 1 or 20 organizations/companies, the forms don't need to be repeatedly filled out.  The system is designed to pull information from the original form. There may be a few particulars that need to be added to a companies/organizations form.

All the pharmaceutical companies have patient assistance programs. All the drug manufactures are listed there

The other way to reach drug manufactures is 1. call the manufactuer patient assistance number(goolge keywords: drug name and manufacturer, then to webpage>>>patient assistance. Very time consuming.

There is so much more on www.needymeds.org. It took a bit of time to wander through the whole site. I've shared a telephone walk through with many friends and relatives. I even called healthcare facilities to tell them about this link.

For completeness, there are many ways to get financial assistance for whatever you need. There are organizations that will do things for you i.e volunteers that buy groceries, drive, install handrails, build wheelchair ramps.

How to find the info besides from the link above?  FIND the SOCIAL WORKER(SW).  It's there job to know these things   Talk to all of the following 1. cancer center SW,  2.hospital SW, 3. Insurance companies SW, 4. County SW. 5. church outreach leader.

I requested from my insurance carrier, a consult with a SW. That one appointment with the insurance carrier Social Worker, led to grants totaling $10,550. The meeting with the cancer centers SW, led to coverage of neulasta  for $4000.00.

Bumping in the Weekend

Glad I found this list -  I start chemo next week 

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HomeMom are you getting or do you have a port? I finished chemo a year ago this month and I still have mine. I just go every 6 weeks or so to get it flushed. I've never had one moments problems with it.

I didn't go to chemo class. The nurses, pharmacist, & researcher, worked with me individually, so between what they taught me, and what I learned on BCO I felt like I had it covered.

I will tell you a couple easy, inexpensive ways to protect your mouth from sores or Thrush.

1) mix 1 TBS salt with 1 TBS of baking soda in a quart or so of water. Keep it in the bathroom and every time you use the potty, take a swig, swish around in your mouth for 10-30 seconds then spit it out. I never had mouth sores or even tenderness.

2) every day eat a yogurt, or just take an acidophilus. It will protect your mouth from Thrush.

3) for the first few days after chemo, always close the toilet lid before flushing, and FLUSH TWICE!!! That will protect you and your family from chemicals being spewed into the air from flushing.

4) Hydrate....water, lemonade, Gatorade, decaf tea. Whatever tastes good to you, but caffein doesn't count.

5) Rest when you can. Chemo saps your energy, so when friends or family ask what they can do, tell them, even if it's just driving you for chemo, or fixing a meal for your family. Most people want to feel like they can help in some way. They just aren't sure what to do. TELL THEM!

6) try not to worry too much about hair loss. IT COMES BACK RATHER QUICKLY! My hair was long & straight before chemo. I had it cut in a pixie the night before starting chemo. The night before my second chemo (3 weeks later) I had my son buzz it off. You don't need to shave it. I bought pretty scarves & learned how to tie turbans on the Internet. Even some cool tee shirt wraps. I loved how quickly I could get ready for church. I still shampooed my bald head, then towel dried it, but I put the pony tail Doo Dads, brushes, & hot rollers away. My hair came back in curly! It will probably go straight again eventually, but for now I'm enjoying the curls. 

7) there many great meds for nausea. So if you have nausea, and what they give you isn't working, call your doc. There's always someone on call, and they don't want you sick. I had 4 Adria/Cytoxan (every 3 weeks). Then 12 weekly Taxol. I NEVER had nausea. I still have the entire bottle of pills they gave me for it. Never even opened it.

8) HYDRATE HYDRATE HYDRATE

9) don't be surprised if you have to take a lot of breaks. I would get out of the shower & sit on the toilet to dry off. I'd sit there for maybe 5 minutes before I had the energy to get dressed. When going to church or the store, my husband would drop me at the door & pick me up again.

10) Wash hands frequently & remind others around you to do the same. 

HYDRATE!!!

Put your fighting boots on & slay this dragon!!!!

2nd_Time I never did get the metallic or fuzzy tongue taste. I'd heard of it and dreaded it, but I was fortunate. I could taste much from day 5- day 9. I actually found the one thing I could still taste was Taco Bell. I enjoyed their Strawberry Fruitista too. I've always been a decaf iced tea drinker, but didn't drink it at all thru chemo. I still drank my coffee, but barely tasted it. I also gave up (for a time) my one Diet Coke a day.

That's a good idea about the cinnamon candy.

Paula

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