Newbie

Posted by hkc9890 @hkc9890, Dec 12, 2020

I was diagnosed Wednesday before Thanksgiving, invasive ductal carcinoma, triple negative. Next Tuesday meet the multidisciplinary team. I am a Nurse, but no oncology experience and waiting to hear what’s in store. Anybody have the same diagnosis and have any advice while I’m waiting for the plan?

@hkc9890

Thank you so much for your insight. I appreciate it.

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@hkc9890
To add to Laurie's great account of her experience:

I brought my Kindle, a water bottle, mandarin oranges, and almonds to each infusion; and I wore a dress or shirt which unzipped down the front which provided easy access to my infusion port. I drove alone to and from the clinic which was ap. 2.5 miles away through residential streets.

Prior to each infusion, I was instructed to apply a generous amount of lidocaine over the port placement ap. one hour in advance, and place a bandage over the lidocaine. I soon became allergic to bandage adhesives in general during chemo, so I bought some paper tape and used it to secure one of those windowed bandages, wrong side out, over the lidocaine. I also requested that the nurses use paper tape when securing the infusion line to me.

I was prescribed both Ondansetron Hcl (Zofran) and Prochlorperazine Maleate (Compazine) for nausea, but I never needed either one. Some people develop mouth sores during chemo. If you are one, ask for a prescription called Magic Mouthwash. It's comprised of diphenhydramine, viscous lidocaine, antacid, nystatin, and corticosteroids, and is obtained from a compounding pharmacy.

In my case, I ocassionally would get bad nose bleeds. A product called BleedCease (on Amazon) worked like a dream at ending them.

My first few infusions were 4 hours long. One of the first things I learned was that I wasn't a good candidate for the benadryl (which was one of the additives). They gave it to make sure that I didn't have a bad reaction to the Taxol (Paclitaxel). Unfortunately, it kept me awake for almost five days following an infusion, and completely stopped my bowel movements. With the oncologist's approval, they reduced and then discontinued the benadryl; and, by a recommendation from one of the infusion room nurses, I bought some Smooth Move Tea (basically senna leaf and a few other herbs) on Amazon. (I had tried milk of magnesia, stool softening drugs, and other OTC drugs at the pharmacy, but nothing worked until I consumed the Smooth Move Tea.)

The other experience worth noting is, if you're going to have Taxol, it has to be filtered… be sure to check with your infusion nurse each time that she's using a filter. One of the infusion nurses I had did not know that. The unfiltered Taxol clogged my infusion port after repeated mistakes by this nurse; it became increasingly painful, each infusion was more difficult to get a flow, and no one knew why. Although I was supposed to continue with Herceptin for nine more months, I had to have the port removed. No one at the clinic would acknowledge the error. Because so many people are involved in your cancer journey, it raises the risk of an occasional mistake… that's just a probability axiom, and one which hopefully will encourage you to research every leg of that journey.

Like Laurie, I lost my hair about 2-3 weeks in. I immediately asked a hair dresser to shave my head, rather than pick up hair each day on my pillow or in the drain of the shower. This also means that you will need a set of soft, knitted caps to keep your head warm, day and night. Amazon has some wonderful ones in various colors and designs which can be spruced up with scraves and head bands, etc. You will need to get some before you start the chemo. After you are through with however-many-months of chemo, you will want to take 30,000-50,000 mcg of Biotin to get your hair and nails growing back. Just be sure to discontinued it 3+ days before a thyroid test.

Also, I found that keeping a journal of each day's reactions over the three months of infusions was helpful when I had my weekly visit with the oncologist or the nurse practioner. Noting that week's side-effects allows them to suggest palliative measures, or to change the dose of the Taxol.

Best of luck to you with your treatment plan. Keep us posted on how it goes and know that we are here for you.

REPLY
@elizm

@hkc9890
To add to Laurie's great account of her experience:

I brought my Kindle, a water bottle, mandarin oranges, and almonds to each infusion; and I wore a dress or shirt which unzipped down the front which provided easy access to my infusion port. I drove alone to and from the clinic which was ap. 2.5 miles away through residential streets.

Prior to each infusion, I was instructed to apply a generous amount of lidocaine over the port placement ap. one hour in advance, and place a bandage over the lidocaine. I soon became allergic to bandage adhesives in general during chemo, so I bought some paper tape and used it to secure one of those windowed bandages, wrong side out, over the lidocaine. I also requested that the nurses use paper tape when securing the infusion line to me.

I was prescribed both Ondansetron Hcl (Zofran) and Prochlorperazine Maleate (Compazine) for nausea, but I never needed either one. Some people develop mouth sores during chemo. If you are one, ask for a prescription called Magic Mouthwash. It's comprised of diphenhydramine, viscous lidocaine, antacid, nystatin, and corticosteroids, and is obtained from a compounding pharmacy.

In my case, I ocassionally would get bad nose bleeds. A product called BleedCease (on Amazon) worked like a dream at ending them.

My first few infusions were 4 hours long. One of the first things I learned was that I wasn't a good candidate for the benadryl (which was one of the additives). They gave it to make sure that I didn't have a bad reaction to the Taxol (Paclitaxel). Unfortunately, it kept me awake for almost five days following an infusion, and completely stopped my bowel movements. With the oncologist's approval, they reduced and then discontinued the benadryl; and, by a recommendation from one of the infusion room nurses, I bought some Smooth Move Tea (basically senna leaf and a few other herbs) on Amazon. (I had tried milk of magnesia, stool softening drugs, and other OTC drugs at the pharmacy, but nothing worked until I consumed the Smooth Move Tea.)

The other experience worth noting is, if you're going to have Taxol, it has to be filtered… be sure to check with your infusion nurse each time that she's using a filter. One of the infusion nurses I had did not know that. The unfiltered Taxol clogged my infusion port after repeated mistakes by this nurse; it became increasingly painful, each infusion was more difficult to get a flow, and no one knew why. Although I was supposed to continue with Herceptin for nine more months, I had to have the port removed. No one at the clinic would acknowledge the error. Because so many people are involved in your cancer journey, it raises the risk of an occasional mistake… that's just a probability axiom, and one which hopefully will encourage you to research every leg of that journey.

Like Laurie, I lost my hair about 2-3 weeks in. I immediately asked a hair dresser to shave my head, rather than pick up hair each day on my pillow or in the drain of the shower. This also means that you will need a set of soft, knitted caps to keep your head warm, day and night. Amazon has some wonderful ones in various colors and designs which can be spruced up with scraves and head bands, etc. You will need to get some before you start the chemo. After you are through with however-many-months of chemo, you will want to take 30,000-50,000 mcg of Biotin to get your hair and nails growing back. Just be sure to discontinued it 3+ days before a thyroid test.

Also, I found that keeping a journal of each day's reactions over the three months of infusions was helpful when I had my weekly visit with the oncologist or the nurse practioner. Noting that week's side-effects allows them to suggest palliative measures, or to change the dose of the Taxol.

Best of luck to you with your treatment plan. Keep us posted on how it goes and know that we are here for you.

Jump to this post

Thank you for sharing your experience. It is actually easing my mind to hear these. I can do this!

REPLY

Here's a great discussion that @roch started as she was preparing to have surgery. (And now she gives back. I love it.) Check out members tips and advice.
– Preparing for Chemotherapy https://connect.mayoclinic.org/discussion/preparing-for-chemotherapy/

REPLY
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