Chemo comfort kit

[jeroling]

DH starts Folfox in a week and a half. I am trying to put together a kit bag to take with him. I already have a nice home made lap robe that my daughter-in-law made him for Christmas. All the kids and grandkids went together and bought him a Kindle to take with for entertainment. Is there anything else that might make him more comfortable? Anything else to pack for him?

I guess I can't anticipate what this is going to be like and what he might need... any ideas?

[justin case]

I always ate before chemo. I took a book , a large cup of coffee, and hard candies to suck on. It's also good to pack a sense of humor, to keep the nurses off guard, and a little humility, as it might be needed.
Regards,
Michael

[CM35]

All I took with me when I was on FOLFOX was a couple bottles of room-temperature water. For me, the cold sensitivity set in immediately once the oxaliplatin was started. My mouth and lips were painfully tingly whenever I tried to eat/drink anything cold. If you think he might want a snack, take something along that he likes to eat. The food at my clinic is... not the best. Mostly junk food, and not very good junk food to boot.
One of my pre-meds was Benadryl, which knocks me out, so I slept through pretty much the entire infusion. Be sure to take something to keep YOU occupied - make sure there is a book YOU would read on the kindle in case your husband sleeps through it all. Or if you have an Ipad or something, take it with you. The clinic I use has free Wifi. Also, a snack for you if there isn't a place to eat/get food nearby. By the time I had my port accessed, pre-meds and infusion, we were usually there a good 5 hours, including the doctors appointment beforehand... Makes for a loooong day for both of you...

[jeroling]

I was told to come for his first chemo session. They said that it's hard to predict how he will react, but if he does well, he can come and drive himself. DH is planning to keep working as his energy levels allow. He enjoys working and needs feeling that things are somewhat "normal..." He has pretty much a desk job and his Oncologist and the nurse said that many patients continue to work. I work at the same Clinic and plan to work if possible, after the first session. Onc staff said I can come and go freely during his treatments... even bring my lunch and eat there.

Are we being too optimistic?

Packing list: room temperature water - check
hard candies check
lip balm check
Snacks??? Not sure what he will like... fruits? Veggies & dip??? Cheese and crackers???? Didn't think about snacks, because of nausea.

[Patience]

My husband has had numerous chemo treatments, in a room where you can see the other patients. I've observed probably 100 chemo treatments including the "other" patients. Never have I seen one do any "work". Some nap, some watch TV, a few chat while with their caregiver. The pre-meds and anti-nausea drugs tend to make many of the patients drowsy, so concentration is somewhat limited. More power to the patient that can actually "do work" while having their treatment!

Luckily, our facility has good food, and the patients are provided meals if there during a mealtime. I usually make a run to the cafeteria for my own meal(s), since just the patient is fed. (Which makes sense, they are not paid to feed caregivers.)

Warm blankets are provided, and a pillow. Individual TVs are by each treatment recliner chair.

My husband (the patient) only brings his cel phone and a shirt that is comfortable to use when his port is accessed during treatment. I, meanwhile, bring a sweater, a book, my calendar (for scheduling questions), and sometimes a bit of work that can be picked up and put down without fuss.

For the most part, my husband watches TV and naps naps naps.

One drawback to our setup is that there is really nowhere to put a bunch of "stuff" that is hauled in, mostly it has to be balance on my lap somehow. It is actually a major reason that extra unneeded stuff is not taken along.

[Coppercent]

Good luck to your husband. Everyone reacts differently. I always took a laptop to work through infusion. I was the first patient hooked up so that I could be finished by noon so I could get back to work. I always drove myself to and from chemo with no issues. I would run over to the cancer center on my lunch hour on disconnect day to return the pump. I never felt the need for snacks. I ate breakfast before chemo and picked lunch up after chemo on my way to work. My center had awesome warmed blankets but they left lint so I had to take a lint roller. My center provided drinks and had a "library" with books and current magazines.

[GrouseMan]

My wife always takes her lunch and a couple bottles of water. It's important to drink plenty of fluids to help clear the toxic metabolites out of ones system. They provide it at most clinics, but it's never occurred to most that it shouldn't be cold for folks on FOLFOX, so she brings her own. She found that the nausea is greatly reduced if she eats. USE the nausea meds as needed, Start before you go in for the infusion. Some folks fast, and believe that helps the Chemo kill more cancer, but although it might be true, you might be miserable doing so. There is a substantial mental component to nausea, and I think it's important to prevent that at all costs, or one may end up perpetually sick for no other reason than, the mental association of the actual nausea, flavors and fragrances associated with it. Taste is closely coupled to smell, and smell is strongly associated with memory.

Since its winter take a scarf, gloves, and hat. Oxaliplatin is associated with cold sensitivity that can be very painful for some folks, though it's been mild for my wife, despite Michigan weather. However some will tell you breathing cold air can make them feel like their throat is constricting, when it actually is not. Just be aware.

Also, I assume your DH has an implanted Port. Has anyone told you about using the lidocane cream to numb it prior to going in and being connected? The chemo also will result in diarrhea so it's a good idea to lay in lots of immodium. Again my wife starts taking this the morning before she goes in to start the infusion and usually has to take it at least a day or two after the 5-FU pump disconnect. Also you need not heed the box direction for this. The instruction to stop taking it after a couple days, is for people that don't know what is causing the diarrhea. Her oncologist said they know what is causing it, so take it as long as you need to. You may have to work out your own schedule. Start out with the recommendation on the box. Add more if needed, but be careful not to over do it. Always drink plenty of water. Along with her first immodium, she also takes two 400mg caplets of Magnesium. She believes this has helped to keep neuropathy under some control. She was also adding 1000mg of L-Glutamine, daily during the morning of the infusion and while on the pump, as this is also suppose that help with neuropathy, but she believes this was upsetting her stomach so she has cut that to just the day of....

Hope this helps. There should be a couple of threads on the forum about what to expect with FOLFOX treatment, which will detail many other folks experience. My wife's side effects have been very tolerable, and mild compared to most.

Regards,

GrouseMan

[debzak]

Don't eat any of your favorite foods that day, even before treatment as you might never want to eat it again. Just bring what you like todo. My centers have tv, so I would watch tv to pass the tme. It is about 3 hours.

Definitely no cold drinks. Dress warmly and bring gloves for the way home. Everyone reacts differently and things even change a little with each treatment.

Just try to relax...

Good luck

Debbi

[Idonotfeelsick]

I'm now on my 4th infusion (yay 1/3 done) and I've come to think of my time at the oncology center as taking an airplane ride. Bring stuff you'd need while on a 3-4 hour airplane ride. I use my travel neck pillow, their provided blankets, comfy clothes and shoes. I bring snacks to last a couple of hours and a water bottle. I get benedryl so that knocks me out, but I listen to Pandora stations or download audio books to my phone (bring charger). You do here other's conversations (like on a plane), but you can tune them out.

Hope that helps. My husband hates sitting there (I don't blame him), so now he just drops me off and picks me up.

[jeroling]

My wife always takes her lunch and a couple bottles of water. It's important to drink plenty of fluids to help clear the toxic metabolites out of ones system. They provide it at most clinics, but it's never occurred to most that it shouldn't be cold for folks on FOLFOX, so she brings her own. She found that the nausea is greatly reduced if she eats. USE the nausea meds as needed, Start before you go in for the infusion. Some folks fast, and believe that helps the Chemo kill more cancer, but although it might be true, you might be miserable doing so. There is a substantial mental component to nausea, and I think it's important to prevent that at all costs, or one may end up perpetually sick for no other reason than, the mental association of the actual nausea, flavors and fragrances associated with it. Taste is closely coupled to smell, and smell is strongly associated with memory.

Since its winter take a scarf, gloves, and hat. Oxaliplatin is associated with cold sensitivity that can be very painful for some folks, though it's been mild for my wife, despite Michigan weather. However some will tell you breathing cold air can make them feel like their throat is constricting, when it actually is not. Just be aware.

Also, I assume your DH has an implanted Port. Has anyone told you about using the lidocane cream to numb it prior to going in and being connected? The chemo also will result in diarrhea so it's a good idea to lay in lots of immodium. Again my wife starts taking this the morning before she goes in to start the infusion and usually has to take it at least a day or two after the 5-FU pump disconnect. Also you need not heed the box direction for this. The instruction to stop taking it after a couple days, is for people that don't know what is causing the diarrhea. Her oncologist said they know what is causing it, so take it as long as you need to. You may have to work out your own schedule. Start out with the recommendation on the box. Add more if needed, but be careful not to over do it. Always drink plenty of water. Along with her first immodium, she also takes two 400mg caplets of Magnesium. She believes this has helped to keep neuropathy under some control. She was also adding 1000mg of L-Glutamine, daily during the morning of the infusion and while on the pump, as this is also suppose that help with neuropathy, but she believes this was upsetting her stomach so she has cut that to just the day of....

Hope this helps. There should be a couple of threads on the forum about what to expect with FOLFOX treatment, which will detail many other folks experience. My wife's side effects have been very tolerable, and mild compared to most.

Regards,

GrouseMan

We have surgical consult tomorrow (12/31) for port placement. Good tip on the lidocaine. GREAT tip on the association of nausea to tastes, smells... etc. What does she eat? Bland stuff without much smell, I presume... toast, crackers?
Sounds like I need to lay up a supply of Imodium, maybe buy stock in the company? We bought him new hat, scarf... had gloves. (Putting oven mitts on fridge door at home.)

[jens22]

Ear phones and a red box movie. It worked for me at MSK.

[Voxx66]

I bring my laptop and my phone. I mostly play games, play with facebook, answer emails and such but I have dvd's and Netflix if I want to watch something. (my center doesn't have TV's. Seems they think the noise bothers others and I must say - I'd prefer they don't get them)If I get Benedryl I'm dizzy for like 15 minutes but I don't get nausea. Some snacks are good - and some people bring in heavier fare like pizza or fastfood. (the center I go to provides salty snacks and sodas, water, hot cocoa, tea and coffee and people bring in big plates of cookies to share.) Gloves are good in cold weather. Chapstick/Carmex is a must for me. Really it's so hard to say ahead of time. Some people have very few issues while others are absolutely wrecked. Part of it may be anxiety related but some are sicker to begin with and some may be more sensitive to some drugs so I don't know how to predict who will handle it well.

As to work - some do work at the center I go to - sometimes quite loudly ha. Your husband may indeed be able to do that. If I had work to do, I certainly could most sessions.

[Bev G]

Hello,

Be aware that Immodium may do little to nothing to curb chemo-related diarrhea, and since the dehydration that diarrhea causes can be very dangerous, don't waste a lot of time on Immodium if it's not working. Ask the doc for a prescription for Lomotil and switch to it sooner rather than later if it's a real problem that Immodium is not controlling. Oral hydration is imperative, and if diarrhea is excessive, IV re-hydration WILL be needed. Diarrhea tends to be a lot bigger problem on FOLFIRI than with FOLFOX. MgSO4 and l-glutamine might be good supplements, but ask the onc before taking anything in addition to chemo. WRT driving and chemo, some people are zonked for a long time after Benadryl (me) and others not at all (my husband), so check that out thoroughly before your husband makes driving home from chemo plans. Not all chemo centers have TV (mine didn't), and some are a lot slower than others in getting chemo mixed and delivered to the chemo unit. These sorts of things can delay the treatment times significantly. Also, if an outside agency is coming to attach the pump, they can be a bit random in their timing; as Michael said, take a large dose of patience with you, BUTT, you're a nurse so I bet you already know that!

Best wishes to you both!

Bev

[Voxx66]

Actually Bev hit one of the keys to the whole deal: Hydration. I feel sooo much better when properly hydrated on this stuff. Just wanted to reinforce how critical that is. And beware of first bite pain - it's real but goes away after one chews a bit. It's a nasty surprise when it first happens though.

[Val*pal]

It's probably more important that you bring something to entertain yourself since my husband, the patient, tends to doze or occupies himself observing everything. Of course, my husband can nap anywhere, with or without Benadryl! With his current chemo treatment he is given Benadryl, however, so it's Good night, Irene! Most patients bring books or tablets and doze in between like my husband. For a first infusion, sometimes the patient is given a hospital bed in an area where they are more closely observed for possible allergic reactions.

Our infusion center provides warmed blankets for anyone who needs them (even caregivers), pillows, etc. There's also a small snack room that stocks bagels and crackers, lots of sodas and juices in the refrigerator, and, to my husband's delight, ice cream cups! Caregivers are invited to share the snacks and drinks as well, though I usually go down to the huge cafeteria for a light lunch. In fact, since we go to a major medical center, I also make a point of walking through as much of the complex as I can for exercise. In the summer/spring, I sometimes sit outside in a park-like setting. Right now my DH's chemo sessions are very long, so I bring work from my job and find a quiet spot to work for a bit since he's in the chair for at least 6-7 hours.

Good luck to you and your husband for his first infusion. I'm sure it will go well.