Watch our metastatic colorectal cancer webinar where an expert panel discussed topics highly relevant to nurses as they care for patients and provide support to caregivers.
Topics for this nursing-focused discussion included:
MS. KRISTIE KAHL:Hi everyone.Welcome to today's live broadcast, a "CURE Educated Patient Webinar in Metastatic Colorectal Cancer."I'm Kristie Kahl, Editorial Director of CURE.We're pleased to bring you this webcast presented by CURE and in partnership with Bayer.
We have a few important announcements before we begin.We encourage you to ask questions during the event which you can submit by typing them in the Q&A box. You will be receiving a survey via email tomorrow. As a thank you for watching the full webinar and completing the survey, you'll also be entered to win one of three Visa gift cards.
We are pleased to be joined today by our moderator, Kelley Rone, Advanced Practice Nurse, Gastrointestinal Oncology Division of Hematology and Oncology at Mayo Clinic; Nina Grenon, Adult-Geriatric Nurse Practitioner at Dana Farber Cancer Institute; and Amber Norton, Physician Nurse with a focus on GI and GU Cancers at West Cancer Center & Research Institute.
Thank you for joining us today and I'll now pass off to our moderator to begin the discussion.
KELLEY A. RONE, DNO, RN, AGNP-C:Welcome everyone.We're going to begin our discussion.Our first topic is the efficacy of managing adverse events and side effects from treatment for colorectal cancer.Nina, can you describe to us some of the more common side effects that you see from your colorectal cancer patients who are being treated with chemotherapy?
NINA GRENON, DNP, AOCN:Thank you, Kelley.Good evening everyone.Most of the common side effects for the treatment of colorectal cancer, specifically the traditional chemotherapy, include lowering of the blood counts, fatigue, nausea, diarrhea, and mouth sores.Those are the most common.Providing that you follow instructions, what your nurse or your provider tells us to do, the side effects can be well controlled.
There are some rare, unusual side effects, which include hair loss from irinotecan.It's not a common side effect in regimens for gastrointestinal oncology regimens, but it's possible, so keep that in mind.Hair loss and thinning can happen with these regimens.Other side effects include hand-foot syndrome, irritation of your skin, the palms of your hands and feet caused mostly by the 5FU-based regimens, and capecitabine, which is another form of 5FU.
Some other side effects that can be common on biologics are introduced such as drugs like bevacizumab.Then you will have high blood pressure.Protein and urine can have some rashes.Also, rashes are more common with drugs like cetuximab, pembrolizumab.Those drugs can cause an acne-like rash.I'll pass it on now to Amber, who'll talk a little bit more about some of the other possible side effects that may not be as common as ones that I just listed above.Amber?
AMBER NORTON, RN, BSN, OCN:Yeah, thank you.Some of the other side effects that we see, they are fairly common.It just depends on what regimen you're on.If you were to be introduced to FOLFOX, then with the oxaliplatin you will have the side effects of peripheral neuropathy.You may have the cold sensitivity related to that drug for five to seven days after the treatment as well.
Some of the less common side effects that we see, we don't really see the hair loss with the FOLFOX.Hair thinning is mainly common, like you said.It's very rare with irinotecan to actually lose your hair, so we get that question asked a lot when you come in, when we get ready to start treatments.Am I going to lose my hair?With most of our treatments, the answer is no.
MS. RONE:I have a question.How about the specific side effect management of that cold sensitivity?We were discussing prior to the broadcast starting, the weather in all the places that we live.Where I work, it's warm.When we have people who are on oxaliplatin, one of the things that we caution them about is when they get in their car, make sure the air conditioner vent is not pointed at your face.Because 10 minutes down the road when the air is really going and in your face, then they get that sensation of not being able to breathe, and they turn around and come back to the emergency room.
What kinds of things do you tell your patients when it's really cold outside about how to minimize that reaction?
MS. GRENON:It's really hard to give oxaliplatin in the Northeast in the wintertime.It's really rough.I have some young patients that come in without socks, with high heels and their little, tiny skinny jeans.I say, "Oh, my God."But they are prepared because they bring their boots and heavy socks.In the wintertime, we tell patients to wear a scarf around their face, a hat, gloves, boots, and socks.Then other times when they go out, to just be careful not to breathe in the cold air.They muffle, cover their mouth completely.
Obviously the most common things that any one can tell their patients that are on oxaliplatin to decrease the chance of uncomfortable sensation of cold-induced dysesthesias is to avoid the cold all together, so avoid going into the refrigerator, put gloves on.Like you said, don’t put on air conditioning right away in the warm weather.Don't sit under air conditioning or a fan.
MS. RONE:How do you get around that?It's cold.
MS. NORTON:Can I speak on this, Kelley?
MS. NORTON:I agree.I tell my patients make sure you bundle up.Make sure you wear gloves, scarf, hat before you go in the cold.Be prepared.If you do go out, make sure that you're aware that that's going to happen.It's going to scare you.It's okay.We just need to kind of walk through it.This is what it is.Expect it.
I can tell you I am doing at little bit different with this cold sensitivity in the fact that I am in the process of working to get my study going that completely contradicts everything that we just said, and that's with icing.
MS. NORTON:Yes.I'm working on that now.I hope to have the results of that within the year.It will completely contradict everything that we just said and I really hope that it changes the way that we can treat our patients in the Northeast, where we can do this and it's not life-altering for them.Very exciting.I cannot wait.
MS. RONE:Is that design--
MS. GRENON:[Interposing] Sorry, can you explain a little bit more about how you are managing the cold sensitivity with cold?
MS. NORTON:Yeah, a little bit.Our IRB is in process as we speak, but I think it's actually approved.It's icing.It's been studied that the cryotherapy helps prevent the mouth sores with the 5FU.If you are in the colon cancer community, then I'm sure you've heard of the Facebook group, Colon Town.They are advocates of this completely.
It is called icing.During the oxaliplatin infusion, you would ice your hands, your feet, your mouth, and you would ice the entire treatment.We believe that that will de-escalate the cold sensitivity.
MS. RONE:Will that de-escalate the neuropathy as well?
MS. NORTON:We hope so.
MS. RONE:There is actually a question.There's a patient asking about neuropathy.Does it ever go away?I still have it three years later, fingers, feet, and legs.In your practice, do you see a lot of the patients who received oxaliplatin having long-term difficulties with neuropathy that does not appear from exposure to cold?
MS. GRENON:The chronic neuropathy from oxaliplatin is dose dependent.When you reach a certain dose, the majority of the patients, probably 99% of the patients, will have the cumulative neuropathy.Then neuropathy is chronic and it's more like the diabetic-induced neuropathy.For the most part, the patient that gets it in the adjuvant setting where they only get at six months, those patients with careful monitoring during the treatment and with appropriate dose reduction, introduce that dose reduction and hold before they start to have functional impairment.
We find that in those patients, the neuropathy does go away.However, there are about 15% to 20% of cases of patients where it's three years later and the neuropathy does not go away.For the most part, it does go away.It usually starts going away first in the hands and then in the feet.But for those patients that it's gone too far, the neuropathy will not go away.
There are no treatments for the neuropathy.Just some medicines can make them better.In my institution, we're actually studying yoga, patients that have chronic-induced neuropathy from oxaliplatin.Some of the interventions can make the neuropathy better, but no treatment.Prevention is the key.
MS. NORTON:Prevention is key.
MS. RONE:Yeah.Usually we will stop the oxaliplatin infusions after eight doses because we've found that more than that--
MS. GRENON:[Interposing] Yeah, yeah.
MS. RONE:Had a couple of patients who've had some success with acupuncture for that long-term chronic neuropathy.I would say maybe 50%, so that might be something patients could try as well.
MS. NORTON:I've actually had--
MS. GRENON:[Interposing] Try the acupuncture…
MS. NORTON:I had a patient use henna, the tattoos.
MS. RONE:And that helped?
MS. RONE:Interesting.I wonder why that'd work.
MS. NORTON:That one I'm not sure.
MS. RONE:We talked about different treatments and how effective they are for neuropathy.What about the hand and foot skin changes that we see with some of our oral therapies?Have you found that that is a significant problem for most of your patients?Nina?
MS. GRENON:Yeah, it can be well controlled, again, if patients understand they have to first of all be candid and report their symptoms as soon as they start.As soon as their discomfort starts, they need to call us so that we can hold the drug.They need to start aggressive prophylaxis topical therapy.It's rare that we see grade 3 in hand-foot syndrome anymore.It used to be very common in the late eighties, early nineties, when Xeloda was being tested.First it was approved for breast cancer and then later on eventually it was studied for colon cancer and then approved.In the early days, patients used to come in with a lot of pain and ulceration in their hands and feet, but not anymore.
It's fresh in my mind because I just saw somebody this afternoon with grade 3, which was pretty impressive.We just recommend prophylaxis.Listen to your providers and your nurses.Report when you start to develop redness and tautness of the skin.You want to call your nurse and your providers right away and let them know, so that they can make adjustment on doses, probably even hold the dose for a couple of days.Because what happens with hand-foot syndrome is if it goes to grade 3, then it's too late.It's going to take a long time for it to resolve.It will take weeks.
MS. RONE:Amber, when you have a patient who is starting to have difficulties with hand and foot skin changes or really any side effects, I think a lot of patients don't want to tell us when they're having difficulties because they think we're either going to change their treatment or stop their treatment.How do you make it clear to patients about reporting symptoms and that it may not necessarily cause an end to their treatment, but we can make adjustments to make it better?
MS. NORTON:Right.I try to make that clear from the front end when I educate the patients.I educate all of my patients on their chemotherapy regimens.I just make that clear on the front end.I just need to know, so that I can help you.If you don't know, I can't help you, and we may get to a point where I'm not able to help you.
Also, I mean I've been doing it for so long now, I walk in a room and my eyes go to hands.That's just what you do.I can kind of see them before they even tell me and I'll ask a lot of times.They'll say something and I'll be like, "Well, that's not what it looks like."
It made it difficult during COVID--still with COVID, but in the beginning when everybody wanted to do virtual appointments--to kind of identify those side effects because you're not seeing the patient in person.You saw their face.Of course they're going to tell you everything's fine.It made it a lot harder.It got to the point where I was having patients call me and say well, I have this.What do you think it could be?Send me a picture.Let me see what we can get.Let me look at it.That's getting a little bit better and patients are more willing to come in the office now.
MS. RONE:But do you find that people think that they're not telling you because they think they're supposed to be having this?
MS. NORTON:I find that they'll tell me instead of the provider.I get more out of them than my provider does.They're willing to tell me almost anything and then Dr. Grothey comes in and they're like no, I'm fine.
MS. GRENON:It's true.They give more information to their nurses.That's why our oncology nurse navigators, always one of the strategies we have with especially oral chemotherapy, to do lots of followup by phone, by the nurses.Because we know the patients will divulge more information to the nurses.Because nursing is the most trusted profession.Right?
MS. RONE:It's our faces.We just like people want to tell us stuff.
MS. GRENON:Exactly.I think reassuring the patients that it's really important to tell us side effects because we can minimize the side effects and not have to resort to the point where we have to hold the chemotherapy.It's best we would dose adjust and the dose adjustments are better than holding.The dose adjustment can go a long way.
With oxaliplatin, it's best to dose adjust, than to keep it a secret and then get to the point where they're miserable with pain and inability to walk because it's gone so far.
The other thing is I also believe that with patients--because in our patients with colon cancer most of their regimens are every two weeks, I truly believe that they forget.They really do.Because I did a study where patients used to report these symptoms electronically as they were experiencing them and I would get an email.It was a separate platform than MyChart or Gateway.This was a separate software.
I would have the system open and it would beep when the side effect reached a certain severity.I had the advantage of reporting that, having one of the nurses call or I call the patient.
The other advantage was that when the patient came in, they would--did you have fatigue?They would say well, not really.What do you mean not really?Look, I can show you your email.Your severity of fatigue reached skyrocket.I truly believe people forget.It's just innate.It's human to forget, to be able to support, to tolerate another cycle of chemotherapy.You just put it out of your mind.Because the side effects get better the second week, so I think even though we say they don't tell us because they're afraid that we're going to adjust the doses, I also think it's a little bit human nature, that we just forget.That's my interpretation.
MS. RONE:We spent all this time talking about hand and foot skin changes.There are some different ways to give some of the oral medication to try to alleviate some of that.Do you in your practice use any sort of dose escalation for the oral oncolytics to try to minimize some of the side effects that can occur?
MS. NORTON:We do in my practice.We start with just like its dosing, 81, three, four.We do it that way, two, three, four.We find that that actually has helped.When you have some of the orals, those side effects, they come on fast.So we can kind of tell how they're going to be.If they get the full dose at first, it's going to hit them and it's going to hit them hard.They're either not going to want to continue because we made them feel so lousy or their body just won't be able to tolerate it.Escalating it in that manner will keep them on the drug longer and therefore, give them a better response.
MS. RONE:Nina, do you use a dose escalation strategy in your practice?
MS. GRENON:Yeah, so the only drug that we dose escalate that it's based on scientific data is the ReDOS trial with regorafenib.Because that's a third-line drug, we find [break in audio] that a lot of their symptoms related to their disease.To give them another drug, another systemic chemotherapy may make them more ill.That usually was the case, as you both remember when regorafenib was first approved.Now we have the data from the ReDOS trial where we know that we can do an escalated approach that will lead to better tolerability, enhanced chance for response.That's the one drug that we use the dose escalation.
Then patients may go on second-line oral [break in audio] cape/ox or FOLFOXIRI.Those patients were previously treated with another front-line treatment.Based on the tolerability of the first treatment, the second treatment, the oral chemotherapy may be dosed accordingly, so start at a lower dose and then escalate up.For the most part, if people tolerate treatment well, especially in the adjuvant setting, whether it's cape/ox, cape/FOLFOX, we try to do full dose just up front and then sort of deal with the side effects.
MS. NORTON:I'm sorry, Kelley.
MS. RONE:Go ahead.
MS. NORTON:We have gone with our capes.If they are not tolerating at the full dose, we will go down, take a pill away, see how we can manage it the best way to keep them on the regimen as long as we can.
MS. RONE:Yes, it seems--
MS. RONE:--regorafenib is really the only drug that we do the dose escalation for.We have found that patients tend to have more consistent dosing that way because they're not getting to have these severe hand and foot skin changes where they have to stop the medicine until it gets better.If we slowly increase the dose over a period of weeks, they tend to have less.We can stop escalating when they get to the part where they're having trouble.For most other things, we tend to dose reduce and we don't tend to go back up once we dose reduce because [break in audio] don't tolerate it.
MS. GRENON:That's common practice.
MS. RONE:Yes.When you are talking about giving the medications, you have people come in to the infusion center to get their treatment.Amber, you talked about using the ice to prevent mouth sores and now we have people who are using the cold hats to prevent their hair loss.What about when a person comes in?Are there any tips that you could offer or any advice that nurses could use as far as administering their treatments?
I'll give you an example.At our facility, we give a lot of FOLFOXIRI and we have found that if we give the oxaliplatin first and then infuse the irinotecan second, sometimes people will start having this whole-body reaction because the irinotecan is not body temperature.We will give the irinotecan first and oxaliplatin second.Have you found anything like that in your practice?
MS. NORTON:We actually have one patient that we have to do that exact same thing with.It was very strange.When it was first reported to us, the nurse reported it as an allergic reaction.We had to delve into it a little bit more to find out exactly what it was.Is that truly?It was just that, so we swapped it around and it's fixed.But for the most part, our chemo room is really good at kind of figuring out how each medication is given.
When we have tried to adjust the way some of the pre-meds were given with the FOLFOXIRI, there was a time where they were giving all of their pre-meds up front, including the atropine and then giving the irinotecan towards the end, and so we were having some issues.We kind of swapped it around a little bit.
MS. RONE:Do you give atropine as a rule in your patients when they're on irinotecan?
MS. GRENON:I usually let the nurses decide, the infusion nurse and the patient decide.It's all up to them what they're going to do.It's a trial-and-error situation.Each patient is individual how they deal with it.Then it's documented and so that everyone will do the same for that particular patient.Some patients like to get it in half doses.Some, all of it at once.Some want to wait all together, actually.I just leave it up to the infusion nurse and the patient what they want to do.
MS. RONE:We actually have it in our treatment plan as a scheduled medication, but we have had more than a few patients who have developed constipation after maybe getting the irinotecan.Then we will make it as an as-needed medicine if they start developing cramping or some hypersalivation, all of the things that can happen with irinotecan.Then they can receive it.But we're kind of the same.We kind of assess what the patient actually needs and treat it accordingly.
MS. NORTON:We hold it as well if they report constipation.We've also lowered the dose.We cut it in half.
MS. RONE:What about antiemetics that you use prior to some of your regimens?Have you found one is more effective than another?Nina?
MS. NORTON:Yeah, so for FOLFOX and FOLFIRI, we use Aloxi and/or Zofran.We have a tendency to prefer Aloxi and dexamethasone.Then patients can do Compazine on day one and Ativan.They can do that for day one, day two, and then day three they can do as-needed Zofran.With FOLFOXIRI, we have a tendency to start off with Emend, Aloxi and/or Zofran, mostly Aloxi, dexamethasone, and as-needed Ativan.I have a tendency to give a lot of Ativan to my patients, especially FOLFOXIRI.Because then they just sleep through.They're nice and peaceful.Those are two regimens.
With FOLFOXIRI, we do post-chemotherapy dexamethasone.The rule is that we add and not take away.We would take away only if the patient wasn't tolerating a certain compound or drug.And yourself, Amber.What do you guys use?
MS. RONE:The post-treatment dex, when do you have them start it?
MS. GRENON:Yeah, so we give a dose pre-chemotherapy IV and then on the next day, we do dex.The real post-dex regimen is 8 mg b.i.d., twice a day for two days.Then goes 4 mg twice a day for two days and then stop.I do quasi.I do lower doses of dexamethasone just because I just am careful with the dexamethasone, just afraid of myopathies and side effects.It's just as effective.
MS. RONE:--prevents the crash.
MS. GRENON:Exactly.It's just as effective to treat the nausea.That way I know it's a lower dose.Patients are not going to-- mean it takes a lot of dexamethasone before people develop side effects related to steroids.In my experience I've found it takes really a lot, but a lot of my patients are young, getting younger and younger with colorectal cancer, and I just want to give them well control of the nausea with minimal side effects from the drugs.
MS. RONE:Amber, how about you?
MS. NORTON:We do the same with the exception of the post-treatment dex.That was interesting.I mean we do that with some of our taxanes, but not with our FOLFOX.We use a lot of Aloxi.We are using Emend.Recently we've started using Cinvanti.Unfortunately, sometimes the antiemetics that we give prior are based on what the insurance will allow us to do, so we kind of focus on that.With our self-pays, we just do--
MS. GRENON:[Interposing] We are fortunate EMEND IV is now formulary, so if it gets administered, it gets reimbursed, especially if you can prove that the patient needs it, has failed Aloxi and dex.If they fail dex pre-med, then they automatically qualify for Emend.It's covered.
Some insurances also do the Tripack.I'm sorry, I still like the Tripack better.I'm old fashioned.
MS. NORTON:I haven't seen a Tripack in awhile.
MS. GRENON:Yeah, and I had some patients that I used it.I swear it just works better.Then the Cinvanti, the form of Emend, a lot of patients just have the opposite reaction, where they get nauseated.I just love the Tripack for patients.It's [crosstalk].It's dictated.
MS. RONE:We use the post-treatment dex as well.I've had a couple of patients who feel pretty good the day or two following a treatment, and so we'll have them start it on our disconnect day.That works better then.
MS. GRENON:You do how many days?Four days?
MS. RONE:We usually two three, but we don't do the taper like you've discussed.But I will occasionally kind of create my own taper, so extend it out to four or five days, depending on how much difficulty they had.Sometimes I may taper it down a little bit slower, so it kind of depends on if they complain of that I was feeling great until I stopped the dex, and then I--
MS. GRENON:[Interposing] Occurrence, yeah.
MS. RONE:What about--
MS. GRENON:[Interposing] Do you find that that schedule is better for the patient's quality of life?
MS. RONE:Not always, but sometimes.Sometimes.I think it also depends on the age of the patient.Like you said, sometimes the younger patients have a little bit better tolerance of just stopping the dexamethasone kind of like that, but the older patients may have a little bit of trouble.Plus the metastatic patients, if they've been on treatment for awhile, they also will tend to have a little bit more difficulty.
MS. GRENON:Yeah.One other drug to keep in mind is olanzapine/Zyprexa.If patients are resistant to all of the above that we discussed, Zyprexa 2.5 to 5 mg at bedtime for five days after the chemotherapy works like a charm.
MS. RONE:Yeah, we--
MS. NORTON:[Interposing] Do you find yourself starting with the 2.5 and then going up to the 5 or do you start with the 5?
MS. GRENON:Interestingly enough, it's not based on science.It's based on intuition.It depends on the patient and how they tolerate the other drugs.Because olanzapine is a psychotropic, an antipsychotic, I usually tell them right up front that that's what it is.But I'm not using it as an antipsychotic; I'm using it for nausea.Then I look at their list, what other medications they're on.Because there may be a drug-to-drug interaction with Compazine or Reglan and then decide what I'm going to do, 2.5 or 5.
MS. RONE:Yeah, so--
MS. NORTON:[Interposing] Yeah, if we don't tell them about that medication, they'll call you, want to know why you put them on an antipsychotic.
MS. GRENON:Yeah, yeah.
MS. RONE:I always say, I don't believe [break in audio] if you have nausea.It works really well.
MS. NORTON:Yes.Yes, it does.
MS. GRENON:Plus they get the benefit of appetite stimulation and sleep.
MS. RONE:Well, I'll usually start with 5 mg and then I'll say to them if you feel kind of hung over the next morning, then you can cut it in half.
MS. NORTON:That's what I do.
MS. RONE:Also, for your information--
MS. NORTON:[Interposing] --especially in my older generation.
MS. GRENON:Yeah, in older people they may be a little bit more sensitive.But just know that it can also be given--although, the pharmacokinetic of the drug is a one-time dose drug, we do find that small doses can be given if needed every six hours.So 2.5, if you want to do twice a day, you can do the morning and the evening.Patients that have lots and lots of nausea, they are resistant to all the other regimens, you can do 2.5 every six hours.Obviously, do it slow and escalate the dosage like 2.5 twice a day, 2.5 three times a day, 2.5 four times a day.It's a really good anti-nausea medicine.
MS. RONE:You don't find people are too sleepy with that?
MS. GRENON:I'm sorry?
MS. RONE:You don't find that your patients get too drowsy on that dosing, four times a day?
MS. GRENON:No, no.I mean again, you have to monitor your patients.Just say we're going to try.But in patients that are just resistant to every other regimen, that's one of the regimens to think about.
MS. RONE: For people who have metastatic colorectal cancer, one of the things that I have found very difficult is appetite suppression, which contributes to fatigue.What kind of advice or recommendations do you make to your patients who are having no appetite or nothing is appealing?
MS. NORTON:I spend a lot of time counseling my patients on what they should eat, what we can't eat, just talking to them.Smaller meals, anything that they can eat, please try.Whether they think it's just a small amount and it's going to matter or not, we talk about flavorings, what we can do to flavor waters, even foods that are not going to increase their nausea or increase their diarrhea.
I find just talking to them--I have a nutritionist on my staff too who is really great and we talk to my patients together about what they should eat, how many calories a day they should get, what the best things are for them to do.But I've found that just sitting down and telling them: look, you don't have to eat three meals a day.I know that's what everybody tells you you should do, but you don't have to do that.Eat what you can throughout the day.If you just eat small bites all day long, then at least you're getting something, as opposed to nothing.And hydrate.Hydrate, hydrate, hydrate.
MS. RONE:Nine, do you have any good tips that you offer?
MS. GRENON:Yeah, so I agree with all that Amber said about small, frequent meals, foods that people like.Always think about keeping your mouth moist, because sometimes if your mouth is dry, you're more apt to not want to eat.Hydrate.Also, lots of sessions with the registered dietitian help.We're fortunate that we have a whole team of them and they we refer back to them all the time.
But when I see patients, we always spend a little bit on nutrition, because I think that's really important.But when the anorexia and cachexia of advanced disease set in, then it's really challenging because of the fatigue and pain and everything else.
Some of the things that I have tried where I have had a little bit of luck is using low doses of dexamethasone.Again, I'm really careful with it.I'll do like 4 mg for two weeks, 2 mg for another two weeks, and then every other day and then stop.That's really helped.Again, there's no science to it, but it helps a lot because it can help with fatigue, it can help pain, visceral pain, bony pain as well, and with the appetite.That is one of the times that I will freely use the dexamethasone, still with caution.
The other thing is to combine it in younger patients with Marinol.Marinol is a really old, old drug that we used to use for nausea when I first started as an oncology nurse back in the eighties.We didn't have Zofran, so we had to resort to Marinol.Marinol I do believe has been FDA approved for appetite stimulant in the HIV population, AIDS population.I give it a try.I'm willing to try it, especially with younger patients.
For people in the audience, Marinol is the synthetic form of marijuana or synthetic THC.That given at nighttime and dexamethasone during the day combined can help the appetite.
MS. RONE:One of the things that I have found is that when people don’t have an appetite, they just don't think about eating because there's not that thing that's stimulating them to eat, and so I'll tell people just to set a clock.You've got your iPhone.Make an alarm every three hours and you eat something.We [break in audio] the same.Eat whatever you want.We don't care if it is no viewed as necessarily something that's nutritionally healthy.If you can get it in, might get you some calories, then we're okay with it.I also tell them to find the things that taste good and eat them all the time.Right?
MS. NORTON:I do that.
MS. RONE:[Break in audio] the things that taste good.
MS. NORTON:I do that, yeah.I also will take things that other patients tell me that has tasted good to them or that hasn't and I will just mention those when I'm educating another patient.I have patients who have said this works or do this.I have a patient for some reason pickle juice--patients love pickle juice because they can taste it and it doesn’t taste weird.I'm like eat pickles.Eat as much pickles as you want.I listen to what my patients tell me and I take that on to help me in my practice.My patients are my best resource.
MS. GRENON:That's good information.That's really good information.What patients tell me, give to others.I tell them this is not sundaes - - , but it's really worth--
MS. NORTON:[Interposing] Yeah, no science.
MS. GRENON:--it when I have a patient trust me.I feel like I have to pass it along.
MS. NORTON:I do too.
MS. RONE:I will often explain to patients: if you're not eating enough calories, your fatigue's not going to be improved, and so--
MS. GRENON:[Interposing] Exactly.
MS. RONE:--yourself in order to give yourself energy.What about--
MS. GRENON:[Interposing] Immediately after chemotherapy there are so tired, they can become, like you said Kelley, they just don't have anyone to wake them up and stimulate them to eat and drink.The same thing, someone that's receiving active chemotherapy and becomes dehydrated because they're so tired that they don't even think about the drinking part.It's the same thing with the eating.They're just so tired that eating doesn't become a priority anymore.
MS. RONE:Right.It's a bit of a vicious cycle.If you don’t eat, you're tired.Then you're too tired to eat or drink.One of the things that I will often tell people is if you can increase your fluid intake, you may find that your fatigue is somewhat better.If you can get up and move around a little bit, then your fatigue is better.But it's hard to get started.
MS. RONE:We're going to move on to the questions and answer portion.There is a question about side effects of Afinitor.Nina, do you want to address side effects of Afinitor?
MS. GRENON:What's the question again?
MS. RONE:The side effects of Afinitor.
MS. GRENON:Everolimus?It's not something that we use for colorectal cancer though.
MS. RONE:Kristie is saying ignore that question.Never mind.
MS. GRENON:I have a lot of patients on Afinitor.I'll answer it.
MS. RONE:But not for colorectal cancer.
MS. NORTON:Not for colorectal.
MS. RONE:Here's another question.What about fasting prior to treatment to help improve the treatments?Anybody ding that at your center?
MS. NORTON:I don't recommend fasting.
MS. RONE:Nina, anyone--
MS. GRENON:[Interposing] Me neither.I don't recommend fasting.When you're receiving chemotherapy, the body is doing overtime and we have to give it fuel.That's the only way I can explain.You cannot fast.I mean you can fast say because you're afraid you're going to get nauseated, so maybe have something really light, fasting in that sense, but not fasting to starve the tumor, if that's what is meant because of the sugar theory, that tumors feed on sugar.Well, I don't know.My prescription is to eat high calories, high protein, high fat meals.I love to give that prescription out every day.
MS. RONE:The problem with fasting, there's lots of evidence, research about fasting and how it improves overall health.However, fasting has not really been studied in patients who have a malignancy and who are in chemotherapy.We usually will tell people we do not recommend fasting either.Because we are the same.We want our patients to eat.Because most of them don't want to eat, so we have to encourage them to.
MS. RONE:There's another question about chemo brain.What do you tell your patients about chemo brain?Nina?
MS. GRENON:Yeah, so cognitive fatigue is real.It's real.Basically, patients that are receiving adjuvant chemotherapy, it'll go away.Patients with metastatic disease, they have to keep going.It's something you have to deal with.It's the same thing as getting old and having a limited short-term memory.Like I said, I call it cognitive fatigue.You have to deal with it.
MS. RONE:Any recommendations on how to improve that?
MS. GRENON:Yeah, I mean notes to yourself, frequent reminders, just your basic recommendations that you would make in someone that has a poor short-term memory.The ability to concentrate and think clearer, I think make yourself concentrate.Read books that are light.Watch something that's not heavy.Go for a walk with fresh air.Again, not proven by science, but I don't think that science has proven chemo brain.I believe in chemo brain and it's real because I see it every day.Those are some of the interventions, to clear your mind.Clear your chemo brain.
MS. RONE:Amber, do you have any tips you give people?
MS. NORTON:The same thing.Note taking.Smartphones are a great, great thing for chemo brain now because all you have to do is talk to your phone and it'll keep a note or set a reminder.Don't be so hard on yourself too.You may search for words and it may take you longer to find them, but that's okay.Just give yourself the time and find them.
I've had to remind my patients to just be easy on yourself.You're going through a lot.It's expected.It's not anything that is not expected, so just give yourself time, gather, and it'll come to you.
MS. RONE:I will encourage people to do word puzzles, things like word search or Sudoku or crossword puzzles, especially if they have not ever done those kinds of things before.Again, I'm with you.Nothing has ever been proven about chemo brain, but I see it all the time.Usually we can get people's brains to be engaged in a way that is different than they're used to.It tends to help kind of put the cogs back in the right track.It doesn't cure them.It makes it a little bit better.
Do you at your practice use any kind of calendar or any kind of tools to help people keep track of their side effects?You had mentioned that you think people forget.Do you use anything now to help people think about what their side effects are?
MS. GRENON:Yeah, we encourage diaries.We have a binder that we give patients when they start, when they come in as new patients, or they may start a new regimen if they're older patients, been with us for awhile.We started giving the binder about two years ago.Even in the binder there is a part where you can write notes.That's what our patients use because we offer that, but you can use anything, like a notebook or even your Smartphone on the notes, and just write everything down.I think that's really helpful, to write things down.
MS. RONE:Amber, how about you?Any tools that you use?
MS. NORTON:We also have a new patient binder that has a section in it for side effects.Also, I am very available to my patients.I give out my email address and I tell them make sure to give me a log.Keep a diary especially that first week.Because when they start, they start their regimen and I'm like okay, I'm going to call you in a week and I want to know how you feel, so just write it down.Even if you think it's nothing, write it down.I just want to know.
That has actually opened up more communication than just that binder.I get reports now from a lot of my patients that are like well, you said you wanted the report.
MS. RONE:Good, so here's another.Go ahead.
MS. GRENON:Yeah, patients are very good when you ask the to write down.It's almost like giving them homework and they want to please their nurse and providers.I think it works.Even with blood pressure.I keep blood pressure diaries, heart rates, SPO2s.It's really helpful to see the pattern, what's going on at home.
MS. RONE:I love it when people bring in a list to their appointments.Because that way you know all their questions are going to be answered and they won't get home and say I wish I asked about that.
MS. NORTON:Yes, I love lists.
MS. GRENON:I do too.
MS. RONE:Here's another question for the audience, another diary question.Do you have anyone who has tried the keto diet to help minimize their side effects?
MS. GRENON:I have a patient--
MS. NORTON:[Interposing] I haven't had it to help minimize side effects.Sorry.We have had patients ask for weight loss reasons, but not to minimize any side effects.
MS. RONE:Nina, anyone trying that at your facility?
MS. GRENON:First of all, we discourage it, but I do have one patient.He doesn't have colorectal cancer.He has a different cancer and he's been on a keto diet since he started his treatment.He's on his 12th cycle and he's lost a lot of weight.We discourage it.We completely discourage it.
MS. RONE:Do you feel he's having fewer side effects?
MS. GRENON:It's hard to know because he's never been on a keto diet and chemotherapy at the same time.He tolerated it well, but he's young, healthy.He's the type of person that you know would tolerate--this particular regimen is well tolerated to begin with.
MS. RONE:When you compare him to other people who are having the same chemotherapy, does he seem to be having less trouble?Could you say that the keto diet--
MS. GRENON:[Interposing] Attribute it to the keto diet?See, the regimen in general is well tolerated, so it's hard to know if the keto diet is helping this particular individual.Because if he wasn't on the keto diet, I'd bet you that he'd tolerate it just as well.He just lost a lot of weight that he doesn't need to lose.
MS. RONE:Yeah, that's the trouble with a lot of these kinds of things.I find that people find out they have cancer and then they change their diet completely.Then they start losing weight and they feel terrible because they're not getting the things that they need.They started an entirely new diet while they're on chemotherapy, which is probably not the best time to start something new.We have found that to be true.
We all work kind of in different places in the country, but it seems like we're all doing a lot of similar things to help manage side effects from the patients.As we pointed out, nurses are an excellent resource for helping the cancer experience be better.
Unfortunately, we're out of time. If you’d like to watch this webinar again, it will be available on the Webinars-On-Demand page of Curetoday.com within the coming days.I want to thank our panelists and the audience for attending and participating in today’s event. I would also like to thank CURE and our partner Bayer, for making today’s educational webcast possible. Don’t forget to check your email tomorrow for the survey to be entered to win a gift card.Thanks for joining, and we’ll see you next time. Goodbye.