Questions regarding Folfox treatments

[annieliz]

Hi,
I have done some searching on the forum, but can't find answers to my specific questions, so sorry in advance if these have been answered before.

First - when will I know if oxaliplatin needs to be cut down? I have had 3 infusions so far, and the last two were a bit tougher that the first, meaning that I had bad calf cramps on days 2 and 3, and cold sensitivity and hand spasms until about day 6. I feel like these issues are not so bad, but I just don't know where that line is where I should inform my oncologist that the side effects are so severe that the oxi needs to be reduced so that they don't become permanent.

My second concern is loss of muscle mass. I have always exercised, and between swimming, yoga, and moderate weight training, I had a fairly muscular upper body. Now I feel like I look like a chicken. Any recommendations for building muscle during chemo?

Sneaking in a thrid ? - Can I have a Guinness between treatments?

Thank you all for all of the knowledge you share on this forum.

[Rock_Robster]

Hi annieliz,

All good questions! My views below, others will no doubt have more

1) There are normally 3 potential dose-limiting factors for oxaliplatin:
- cumulative toxicity - usually neuropathy. My oncologist got concerned when it was neuropathy that affected quality of life (eg balance, pain, etc) that didn’t largely resolve by the next treatment cycle.
- acute toxicity. Some folk (myself included) will have a sensitivity/allergy-type reaction somewhere along the line, which will warrant changing treatments
- treatment failure (ie progression while on treatment). This seems less common on oxaliplatin as the neuropathy is usually dose-limiting first, but can happen.

The main thing is to make sure you’re updating your onc on all side effects before each treatment, so they can factor this into your treatment plan accordingly.

2) Maintaining muscle mass is tough. I was also relatively strong before chemo, but I’ve lost a lot. I tried to double my protein intake during the “good” week between treatments (esp through shakes and lean chicken), and keep up resistance training where I could. It’s damn hard though and I think most people will experience some decline in body composition.

3) As always I’d say check with your doc, but I’ve been known to have a drink or two toward the end of my “good” week when I feel like my liver is not going to murder me for it. They say one drink on chemo is like 3 or 4 normally though, so just take it slow and definitely watch out if you’re driving or on other medications too.

Best of luck,
Rob

[ginabeewell]

Rob’s answers are comprehensive and I don’t have too much to add.

I will say re: Oxi, just keep your oncologist informed of what you are experiencing and let him or her make the call. Dr K pulled me off of it before I felt like it was a real issue for me, and refused to put me back on when I inquired after a chemo break!

I can’t drink anymore with my HAI pump but I used to have one beer the weekend before my Monday chemo. I was a wine drinker but chemo ruined the taste for me - a bitter beer maintained its flavor. Good luck!

[Dionca]

It doesn't appear that you are experiencing any major effects from the oxi so far, but you have only had 3 sessions. It seems like it's the fingers and feet that are the main concern. My onc told me that if the tingling/numbness in the fingers/feet didn't resolve by the time the next chemo session came around, then he could cut down on the oxi (or if things got bad, omit it). So, these were the guidelines I followed.

I was too scared to cut out oxi too soon, and should probably have spoken up earlier, because I do have neuropathy in my feet (the fingers rectified, which seems to be the case with most).

No idea about the exercising.

I had the occasional drink towards the end of my cycle. I wasn't even tempted most of the time, because it didn't taste good, but for special occasions I would time it for end of cycle, when my taste buds were getting back to normal. But be prepared to have everyone look at you aghast and say "are you ALLOWED to drink" haha

[radnyc]

Tell your doctor exactly what your side effects are, they can be pretty severe and can last a long time. When I told him about my neuropathy he cut down and also gave me a break a couple of times. Folfox is an effective concoction and the goal is to get through the recommended course even with breaks and reduction in treatment.
Concerning the muscle mass loss, EAT WELL, lots of protein and keep exercising as much as possible. Yes, you’re not going to be lifting the heavy irons anytime soon, but you can do other things. Don’t let the side effects completely slow you down. As far as I know you can absolutely have a Guinness or two, don’t over do it.

I also found that acupuncture helped me a lot with chemo side effects, I did it once a week. I’d look into that.

Stay strong
Peace
Al

[annieliz]

Thanks everyone! I will definitely keep my doc updated about my side effects. Sounds like it's better to do that instead of just sucking it up past the point when something can be done to prevent or minimize the long-term effects.

I will definitely ramp up my protein intake. I mostly crave things like plain buttered noodles, but my amazing DH always manages to add some grilled salmon to my plate. We are not big meat eaters, but we just made a trip today to al local farm where they raise their own livestock and grow veggies, so we have lots of high-quality, healthy goodies for a few meals this week. My goal is to include protein at every meal. I lost about 20lbs from the end of July to mid-August, so I have been basically eating anything that tastes good during the days when I am feeling good, which is usually days 4 though 14. I'll also make sure to focus more on strength training. I do walk and run fairly regularly, so I can trade some of that time for strength workouts.

As far as the beer goes, I have asked my infusion nurses this question, and they respond with a not-so-emphatic no. Not planning on doing any binge drinking (yet), but hoping to maybe celebrate with one beer at my halfway mark between treatments 4 and 5, and after the post-treatment-4 flex sig (ugh!), especially if the results show the chemo is working. I don't think anyone will judge me because I haven't told anybody about my situation. So far, I have only had to take one day off from work for an infusion in NYC. We'll see how long that lasts.

Thanks again for your help. I hope that someday my experiences will be helpful to other going through this.

[horizon]

First - Make sure that you tell them in detail about any and all symptoms. They dialed back my dosage of Oxi when I started having neuropathy.

Second - I feel you so much on this. Between the multiple preps and surgery I lost so much weight and it was completely disheartening. I did get back into lifting when I was in chemo but I was so weak I was maxing out on my normal warmup weights. Just slowly try to do what you can when you're comfortable and the doctor is ok with it. When I had an Oxi infusion on Wed I wouldn't go back to the gym until at least Monday.

[NHMike]

I had cramps following infusions and sometimes before them. The oncologist sometimes added magnesium to the infusion IV.

I've had cramps in the past from working out. Normally I get enough in electrolytes from regular food but I would supplement with table salt. With chemo, I've added magnesium tablets and an electrolyte supplement called Nuun (available at Whole Foods and Amazon). I would normally take 200, 400 or 500 mg of magnesium. 400 or 500 was my default dose. I would take 200 if I felt okay but worried about getting cramps.

I get 500 mg tablets from Trader Joes (they have calcium and one or two other things) and 200 mg tables from Whole Foods.

I also need to take these when I'm fasting as I don't get any electrolytes from food.

[NHMike]

The other option on Oxaliplatin besides lowering the dose is to take a chemo break. I took one of these for one week two times.

[NHMike]

Chemo is tough and things happen to your body, sometimes unexpectedly. I did a lot of walking and some weight-training but there were things that I couldn't do because of the ileostomy. I'd say workout but take it easy. I'm stronger today than I was before chemo but that's because I'm lifting much heavier weights today (a suggestion from my former fitness center manager).

Your primary goal is to make sure that the cancer doesn't come back. There will be time to regain afterwards.

[zephyr]

Rob and the others pretty much covered it, and I only have a couple of quick comments to add. I don't remember seeing this but maybe I missed it so please forgive if it's duplication. First, the reason it's so important to keep your doctor and nurses fully in the loop about the neuropathy is that if they don't stop/reduce the oxaliplatin soon enough, the damage could be permanent. Second, you might consider using resistance bands; they helped me keep up with exercise. The cancer center where I'm receiving treatment has a gym and exercise physiologist available to cancer patients. I had the exercise physiologist prepare two sets of resistance band routines for me: one for the days I didn't feel good enough to get out of bed, and another for "normal" days. Maybe you could find a trainer to do something similar?

[Rock_Robster]

Resistance bands are a great idea! I should try that. I went from lifting weights to just the empty bar on some days which is pretty demoralising

[annieliz]

Thanks, zephyr. I guess I should report every side effect, which I have been pretty good at documenting every day. I just don't know if finger tingling and hand spasms that last until about day 5 is considered worrisome or just a mild side effect. I read somewhere today that your experience with your first treatment is an indicator of how well you will tolerate the full treatment. I had virtually no side effects with my first treatment, and I am only going for 8, but I will definitely take your advice and report everything.

Resistance bands are a great idea, and I am sure I have some around my house that my kids used to use for physical therapy for their various athletic injuries. I also have access to trainers at work, so I will talk to them to see if they have some routines they can give me.

Rob - don't be demoralized! My yoga teachers don't do any weight training - just body weight stuff, like handstands, which I can't do, and arm balances. They have amazing arm muscles! It's weird that I have basically abandoned my yoga practice since my diagnosis. I haven't been swimming either. It's like those things are a part of my old life and I get kind of sad thinking about it.

Gina, Al, Mike, horizon, Dionca and Rob - thanks for all of your tips. Had some tasty locally raised meat tonight for protein, and instead of beer, I treated myself to some organic, locally produced chocolate milk. Delicious!

Have a good night, everyone!
annieliz

[zephyr]

It's weird that I have basically abandoned my yoga practice since my diagnosis. I haven't been swimming either. It's like those things are a part of my old life and I get kind of sad thinking about it.

Don't beat yourself up. You're adjusting to a new normal and adjustments take time. Plus - it's not like you don't have enough on your plate just with chemo. I used to teach Tai Chi and not only have I given up teaching, I've only been to a tai chi class twice since I was diagnosed over 3 years ago. That said, I do try to use the resistance bands semi-consistently and I do make sure to walk at least 10,000 steps a day. For me, walking is critical to keep everything below the waist more-or-less working. Walking and lots of water; if I skip either one, I'm in trouble the next day.

I'm not a doctor or nurse or anything medical, except a patient. So with that as a disclaimer, I think 5 days is worth reporting. It may not yet be worrisome but I think it's starting to go beyond mild, especially if you're having spasms. Don't panic but DO report.

[annieliz]

So, I had my appointment for round 4 yesterday. I reported all of my side-effects, but the nurse didn't seem to think they rose to a level to be concerned about, but they did contact my onc to discuss and the one concern was my very low ANC, so I have to go back tomorrow for neulasta. I plan on taking Claritin to hopefully mitigate bone pain. As far as the chemo goes, they did not change my dosage, but I did gain about 3 lbs., so I am thinking that's why I have very few side effects today - just a bit of finger tip tingling and some leg cramping while sleeping last night.
Thank you, all, for taking the time to answer my questions. I will be sure to keep your advice in mind as I continue my treatments.