First chemo treatment

Since you have so little time to prepare, I'd say the number one thing to do is to have some way to ice your hands and feet during chemo to prevent neuropathy. It's no joke. I'm having a hard time typeing, so type into search engine for suggestions on how to do this. There's been a lot of threads on it.

Welcome, Whizzer.  I just finished 6 rounds of carbo/taxol recently.  Here's what I recommend, in excruciating and way too much detail.

I don't know what subtype of cancer you have, but I'm assuming you're going to have carbo/taxol.  If you have a subtype that might benefit from Herceptin, DO consider having the testing done for her2/neu receptor, depending upon what FIGO stage you are.  I was told I wouldn't qualify for it, and that my insurance wouldn't pay for it, but they were WRONG.  I did qualify, my insurance paid for it without any appeal.

I had a port put in.  I only used it for infusions, never for lab draws, because I wanted to minimize the chance of introducing infection through the port.  The chemo agents chemically burn the tissue if they leak out of the vein, which is far more possible with a peripheral IV than with a port.

Have a good friend/relative come with you for the entire treatment, every treatment, because you will need their help.  In my opinion, icing your hands and feet is absolutely crucial, to minimize neuropathy.  People on this board have related that this has been a persistent and painful side effect of the chemo.  The first round, I tried putting on thin socks/thin lab gloves and putting my hands and feet into ice, but it was too painfully cold, plus the barrier of the socks and gloves, no matter how thin, kept the hands and feet too warm!  What I settled on was this: Bring a picnic freezer chest.  Get a 16 lb bag of ice cubes in the freezer chest - you will use almost all of it.  I got plastic shoe box sized containers (get at least four, maybe 2 extra in case one cracks) and quart-sized take out soup containers.  I also recommend getting four large sized or 8 small sized freezer "blue ice" reusable freezer packs.  My hands and feet were bare (remove all rings because your hands will swell from the cold water).  You will first be given IV and oral pretreatments - Pepcid, Benadryl, and Decadron, in addition to oral ondansetron and an IV push of another anti-emetic.  Get ready to ice 30 minutes before they start the Taxol - your nurse will warn you.  You want your hands and feet COLD from 15 minutes before the infusion, until you leave the infusion center (keep icing right through the Carboplatin infusion which is done after the Taxol).

Nest the plastic boxes for your feet, with a layer of ice packs between the two boxes (or I suppose you could just fill the bottom box with a layer of ice cubes, and replace it as needed).  This is because when your feet rest on the bottom of the box, if you don't do this, the soles of your feet will be in contact with the warm floor, and not be cold enough.  Put your feet in the boxes nested into the boxes with a layer of ice or coldpacks in between.  Add cold tap water to upper box to cover your feet.  Once your feet are comfortable in the cold water, have your "attendant" add ice cubes to the water as tolerated, and draw off warmed water as needed.  Wiggle your feet and toes often to get cold water moving around your feet.  The reason that your feet are in the nested boxes is that you WILL fall asleep from the Benadryl - I usually slept for about an hour, and I can NEVER fall asleep anywhere!  Your attendant will need to keep putting in more ice while you're asleep, too.  They'll also need to help dry your feet and escort you to the bathroom, which you will need to do every couple of hours, because you'll be drinking so much!

Do the same thing for your hands, by putting the quart-sized containers by your sides in the infusion chair.  I put a folded towel between the containers and my outer thighs, so that I wouldn't be icing my thighs, which could have decreased chemo penetration to outer thighs.

Keep wiggling your fingers and toes and moving your feet, to circulate the ice cold water next to your hands and feet.  Have your attendant keep adding ice and removing water.

I brought a heating pad and put it onto my mid section, over the pelvic/abdominal area, to keep warm.  If I hadn't done this, I would never have been able to ice my hands and feet - I would have been shaking with cold, and would have had to stop.

I set up a laptop, running whatever series or movies I wanted.  Familiar comedies helped - my husband and I laughed our way through the chemo sessions.  If you're not in a semi-private area, don't forget headphones or earbuds.

Drink tons of water from right before the chemo starts, right through it, and for a few days afterwards.  I think that possibly the reason that my first round was so difficult was that I hadn't drunk enough water, and became dehydrated.  You need to wash the chemo out of your system.  This is REALLY important, so if you start to get nauseated, you've got to take something so that you can keep on drinking.  On the other hand, many women have related that the first round of chemo was the hardest, and not because they didn't know what to expect, and not because they got dehydrated.

Make sure to have 8 mg ondansetron on hand at home before you start chemo.  My oncologist refused it to me, despite my having asked, and gave me only prochlorperazine, which for me did NOTHING.  They say that if you had bad pregnancy nausea, it's a predictor for bad chemo nausea.  I had very bad nausea by about 36 hrs after the chemo, needed to obtain ondansetron in the middle of the night.  Just insist on having it on hand, even if you're likely to never use it.  And if you get so nauseated that you can't drink, USE it!  For me, I went from being on the verge of vomiting, to no nausea at all, within 15 minutes of taking it.

My experience was that I was wired from the steroids and up until 4 AM the day I had chemo.  I felt okay the next day. But on the second day, I got sick.  That first round, I was in bed with nausea and body aches from the second to about the 5th day, then started to gradually improve, was much better by the 7th day.  Bingewatching helped me get through those days.  No subsequent round was as bad as the first, but I was always sick from at least days 2-4, usually okay the day right after chemo.  And I didn't have Herceptin that first round.

Hair fell out about 2.5 weeks after chemo.  I decided against icing my scalp, because I heard it caused a bad headache, and I just didn't need that extra pain.  It'll grow back.  A lot of people have complained of scalp tenderness when the hair is falling out.

I asked the oncologist to reduce the Decadron dose after the second round with no allergic reaction.  Others have told me that this is routine - but I don't think that my oncologist would have.  I had 20 mg rounds one and two, 15 mg round 3, I think 10 mg round 4, possibly only 5 mg round 5.  Steroids cause cataracts and bone density loss.  So I wanted it decreased, once it appeared unlikely that I was allergic to Taxol.  Round 6 I declined Taxol (because I was beginning to have neuropathy in my feet, and I felt that there was only marginal benefit of a 6th round of Taxol, vs the near certainty that the neuropathy would worsen with that last dose of Taxol), so I had no Decadron pretreatment.  I have NO neuropathy in my hands, and at this point, only some numbness of my left foot on the ball and toes of the foot.  No pain.  Compared to what a lot of the women have reported for neuropathy, I think that the icing really helped, and I think that if I had known to nest the foot boxes in ice, I might have completely avoided neuropathy altogether and been able to have that last round of Taxol.

I found that clear broth soups helped me to get down fluids, when I couldn't drink.  I grew unable to stand the taste of water - moved to seltzer and juice, which I also came to abhor.  The last round, all I could drink was fresh-squeezed orange juice!  But finally, I can drink water again, now that I'm two weeks out from the (hopefully) last round of chemo.  Honestly, except for the baldness, here I am just 2.5 weeks after chemo, and I feel GREAT, as if it never happened!

You can get through this!  It is nowhere near as bad as I had feared it would be.  It is totally do-able.  Don't be embarrassed to ask friends and family for help when you need it.  And there is a lot of support right here from women who have been through it, or are going through it, and understand.

I am now 1 month from my last chemo!  Going for the second brachytherapy treatment this week.(stage 1A, grade 3 for clear cell, and serous) Everyone reacts a little differently to chemo, so take all the information you can and then sift through to find what works for you. Also, the treatment centers differ. At my cancer center there is a snack station, and a fridge with juice and things, also they want you to eat lunch if you are there that long, it is important to not get too hungry. (I was always there for at least 6 hours)The nurses offered me ice paks for my hands and feet. I didn't have much neuropathy, and the ice paks seemed like enough for me. I have slight numbness in 3 toes on one foot. The steroids I was given were pills, I had to take 20mg 12 hours before treatment and another 20 mgs 6 hours before, I was able to decrease this dose for the last 2 treatments. I was given anti nausea things in the IV, one short acting and one long acting. I could not take ondansetron for 48 hours after treatment because it and the IV one would cancel each other out. I did take the prochlorper(Compazine) a couple of times, but as soon as I could start the ondansetron that worked the best, I never threw up, just felt icky. Although I did not feel like eating, it did not seem to make me feel sicker to eat, and it actually helps you, so eat whatever appeals to you, I liked soup, and salty things, even had lasagna! The day after treatment was always fine, till the last one then I felt bad right away. I could not drink water for a couple of days after because it tasted like rusty nails, but I drank lots of apple juice, cider, and I liked V8 juice, and ginger ale. You could get an irratated mouth, ask them about that if they don't tell you. I did only once and you can mix baking soda and salt for a mouth wash which helps a lot. I was constipated for a couple of days followed by diarrhea for a day! I had to have Neulasta because my white blood count went too low. Claritan helps with that. Right now I am feeling pretty good except I have some fibromyalgia and the chemo has made it flare up I think, so I am having a lot of aching leg pains in the evening, but I think that will soon pass. Also the steroids or something gave me migraine type headaches for about 1 day and night each time, tylenol helped with that. And yes, if you don't have a port yet, you may need one. I only used mine for the chemo. I was nervous to get it put in but it wasn't a big deal and I can't imagine having the chemo without a port. Don't know if you are alone or have family but I scheduled my treatments on Friday, my husband was with me on the weekend and Monday then our oldest daughter came on Tuesdays. I just really wanted some company those first few days when I felt so sickish. Generally you start feeling better after a few days so by the next treatment you are feeling pretty good. Mine were 3 weeks apart. Also make yourself move around, you will feel better with a little exercise! When you look back, it isn't really all that long, but when you are in the middle of it, it does seem like forever. You get through it though and all in all it isn't unbearable. Good luck to you.

Stool softners is a biggy, got to keep everything moving.  Claritin helped with bone pain I got in my shins.  I also combined narco and flexeril when the pain got really bad.  I ended up with restless legs and Klonopin really helped me with that. 

Excellent suggestions from other laides. I would also recommend staying away from crowds. Your blood count would be low during your treatment . A cold is the last thing you need. If you have the energy for it walking in the nature was so good for my mental health. I would highly recommend that. If you live in a sunny place, make sure to protect your skin. Chemo makes the skin more sensitive to sunlight. I also tried to follow a ketogenic diet during chemo. Some cancer patients have such big issues with their appetite that they eat whatever they can. I was one of the lucky ones and made sure to follow a healthy diet.

zsazsa1 said:

Very good point, SF73.  I was

Very good point, SF73.  I was very compulsive about avoiding risks of infection, the way one protects a newborn.  I wore a mask and gloves anytime I was indoors in a place other than my home.  I avoided stores, restaurants, theaters.  If people were coming to my home, I asked if they had any cold symptoms, and if they did, asked them not to come.  My husband and son were compulsive about handwashing - and my 15 yr old son even managed to stop biting his nails, to reduce his risk of picking up a cold and bringing it home to me.

It helped that I had girlfriends who would come over to take me out for walks in the neighborhood, in weeks two and three after chemo.  They also would bring me healthy foods to stock my fridge one week after chemo, when I began to eat again.

The ketogenic diet is still being researched, as to whether it helps.  Certainly, it makes sense that cells that are growing fast would require more energy, and want glucose to grow.  Starving them by putting your body into a state of ketosis, forcing them to use ketones instead of glucose - it seems logical that it would put fast-growing cells at a disadvantage, and make them more vulnerable to the chemo.  Ketogenic diet has been shown to favorably alter growth factors that seem to affect cancer cell growth.  I was told by two oncologists that it had been studied and didn't seem to make a difference.  But there is currently another trial at MSK that I believe is enrolling - they never called me back when I called about it, when I was first diagnosed.

https://www.mskcc.org/cancer-care/clinical-trials/17-396

I myself was so nauseated during chemo, that I ate whatever I thought would calm my stomach - and I had such bad diarrhea at times, that I couldn't eat any roughage.  One round, all I could eat was a bite or two of Fettucine Alfredo for days.  Another round, it was a bite or two of flounder Francese-style.  Weird.  Now that I'm done with chemo, I'd like to try dietary changes that might disourage the growth of cancer cells, but there is really no strong evidence for ketogenic, or low-glycemic index, or any other particular diet.  Perhaps just vegetables and a little lean protein?  Hard to tell.  I could certainly afford to lose 20 % of my body weight - just if I were successful in doing it with dietary changes, I'd be so worried that it was due to a recurrence!

Hi Zsazsa

You are absolutely right. There is no concrete evidence that ketogenic diet makes the chemo treatment more effective or keeps cancer away. What I followed was not a pure ketogenic diet. It was mostly plant with some fish avoiding sugar, flour, alcohol etc. During the treatment I was avoiding fruits and complex carbohydrates also but since I have allowed them back in my diet. This is something I did because I wanted to feel like I was in charge. I wanted to feel like it is not just my doctors who are fighting but I was playing an active role as well. I wish we knew more about how our diets affect our chances of getting cancer in the first place and to avoid recurrences once we have them. There are still so many unknowns. 

That's too bad about the allergic reaction.  Do they plan to try it again next round?  I hope you can rest well tonight. 

SF73 said:

Hi Zsazsa

Hi Zsazsa

You are absolutely right. There is no concrete evidence that ketogenic diet makes the chemo treatment more effective or keeps cancer away. What I followed was not a pure ketogenic diet. It was mostly plant with some fish avoiding sugar, flour, alcohol etc. During the treatment I was avoiding fruits and complex carbohydrates also but since I have allowed them back in my diet. This is something I did because I wanted to feel like I was in charge. I wanted to feel like it is not just my doctors who are fighting but I was playing an active role as well. I wish we knew more about how our diets affect our chances of getting cancer in the first place and to avoid recurrences once we have them. There are still so many unknowns. 

 

Somehow, I think that dietarily you were doing the right thing, that would starve the cancer cells of ready glucose to feed growth.  I am going to try to do this, too.