Scared of chemo

[Dancer0707]

Hello, I am 65 and female. I just had a right hemicolectomy June 17. After my colonoscopy May 20 the doc said don't worry about it, looks like nothing much. I was horrified when my surgeon called Friday and said path report said 5 lymph node involvement and I have to have chemo. Soon after that oncology called to make an initial appointment July 8. I was terrified and trying to ask all kinds of questions. All I remember hearing is "home infusion for 46 hours every two weeks for six months." What is that all about? I still work and am so afraid of the side effects. I just called my nurse navigator two hours ago and no answer. I know I'm not the first to go through this but I don't know where to go for support. I've always had a lot of anxiety and this is making it so much worse. I take Ativan but my system is overriding it. Please help. Thank you.

[kellywin]

I know this is so scary. We've all been in your shoes. I won't lie, chemo sucks, but you can do it. People handle the cocktail in different ways. If you work, I'd ask about doing Xelox, which is a pill instead of the pump, with Xelox you take a pill and have an infusion, then you continue the pills for 14 days, then 7 days off and then repeat. This gives you a 3 week cycle, for me it was a good choice. Each infusion I felt different, the first one wasn't too bad outside of the jumpiness from the steroids they give you. They lowered it for the next ones and I felt crappy pretty quickly. I did have to take a few days off between infusions, but the 3 week cycle gave me more days of feeling better.

You're definitely going to need that Ativan, Xanax was definitely my friend during the whole process.

I'm sure others will chime in, some of us did Folfox and some Xelox like me - either way the "ox" is Oxaliplatin and it's the shitty part. Ask your Oncologist about the two different options, and if they tell you the Xelox isn't as effective, find a different Oncologist. Find out the difference between the two, the side effects, etc and make the best decision for you.

I know a lot of others will chime in here. It's hard. It sucks. We understand.

[BrownBagger]

Sorry about your diagnosis. Most of us here have been through chemo of some kind (some of us, lots of all kinds), and there are some things you can do to minimize the effects. But, it's different for everyone. I'm one of those lucky few who really don't suffer too much. I've pretty much figured out how to live my life around the chemo, since I'm probably on it "for life," whatever that means.

The 46-hour thing probably refers to Folfuri or Folfox--two types of common chemo. what they have in common in 5FU, which is administered at an infusion center, and you're sent home with a pump that circulates the chemo for two days at home. I've never had to do that because I take Xeloda instead, which is simply the oral form of 5FU. Ask your doctor if you can have that instead. You don't need the pump and it just involves taking a handful of pills twice a day for a week as part of each cycle. I'd push for the Xeloda (Capcitebine) if I were you.

As to coping with chemo, the most important thing is staying hydrated. Liquids before, during and after will help a lot. I've found exercise to be useful for both nausea control and self-validation. Other nausea control solutions involve ginger in any form, mint in any form, and the King of Nausea Meds, cannabis in any form. You can also get anti-nausea meds from your doctor, which I've never taken. Well, I took them once and it was worse than the chemo, so never again. As to food, yogurt is a good call for the first day or two--especially the morning of your infusion. Chemo can be rough on the stomach.

Finally, listen to your body, but don't take any crap from it, either. Sleep is one of the best things you can do to "heal" from a chemo infusion, but try to stay active when you're awake, even if you don't feel like it. Once you get moving, you may well feel better.

Good luck, I'm sure there's tons more advice that members will be chiming in with.

Just remember, it doesn't have to be too bad. I've had nearly 120 rounds of chemo in my cancer journey, and throughout it all I've stayed very active with a fulltime job, two ongoing freelance gigs, lots of gardening, woodcutting and bicycle riding. I think that's one of the main reasons I'm still here, going on 8 years. That and the cannabis, which has made the chemo tolerable.

[Soccermom2boys]

Awww, sorry to hear the worry and fear of chemo in your post. Had to be tough when the doctor thought your results would be fine and then came back that there was lymph node involvement, sorry. Well, I am a month out from completing 8 rounds of Folfox and I would describe it as miserable, but tolerable. Not sure if that is what you will be getting, but I did have the pump and bi-weekly infusions. First of all, when you go in on the 8th for your initial appointment, you can inquire about getting the smaller pump (depends on your insurance, but I recall them saying Medicare does not pay for it) which is no more than the size of a tennis ball and can easily be hidden in a pocket with no one but you being the wiser plus it does not make any noise. Just throwing that out there for you if you do go the pump route.

I totally agree with the advice given regarding staying hydrated and trying to at least get out and walk as much as you can each day. I definitely noticed a difference once I started tracking my fluid intake and being diligent about getting at least 8 cups a day--any time I started feeling blah I would reach for the water. If you do have Oxaliplaten in your mix then keep in mind fluids will need to be room temp or your throat will hurt--trust me on this (and any other Oxi person will agree).

I worked part-time prior to cancer so I just continued with that while doing chemo and it was perfect because being preoccupied with work absolutely made it easier to not think too much about how I felt, but it is tiring mentally and physically so a half day of work was just enough. Everyone is different how they handle it, but keep it in mind if your employer is flexible with your schedule during this. I would infuse on Mondays and disconnect on Wednesdays and just slug it out on Thursday and Friday, rest up over the weekend and come back the following week feeling fairly decent. I know others like to infuse on Wednesdays and disconnect on Fridays so they have the weekend to help with the mounting effects. I did end up taking off Thursdays after disconnect for the last four rounds, just really tired so I would be a slug on those Thursdays and then come back on Friday generally with no issues. All things to start thinking about what might be best for you and your schedule, etc.

Just keep in mind that it is taxing mentally to be on such a roller coaster with the ups and downs of feeling blah one week and then starting to feel near normal the next only to be slammed back to blah the next week. Your are 100% normal to feel like you want to break down and cry some days--nothing like a good cry to help get you through plus the awesome support from everyone here who has been right where you are and feels your pain in a way your family and friends cannot. Just keep checking back in here, it helps to be surrounded by people who have the same feelings and experiences as you. This is going to be tough, no two ways about it, but it is doable. Keep trudging through and one day leads to the next and eventually you get to the end. Hope you are recovering well from your surgery!

[mypinkheaven]

I ended up having panic attacks just thinking about chemo, so I truly empathize with you. I got my Ativan upped and it helped. The fear and anticipation was worse than the reality.

I hope the nurse navigator gets back to you soon, or give her another call. Just remember that you'll be communicating any side effects with your doctor and dosages can be adjusted.

[Nik Colon]

The most common chemo combo is Folfox. The at home you mentioned would be the 5fu pump. I had that and the pump is, imo, no big deal (mine never made any noise and I had 2 different types, the bottle like and the small ball one). I wore it like a fanny pack and never had issues sleeping with it that way (on my side) It's the oxilaplatin that would most likely be the hardest. You can search here for folfox, if not that, folfiri is usually the second most common. They both include the same things except for the "ox" or "iri" part. As mentioned, the 5fu can be taken via pump or pill (xeloda is the pill form, so for instance it would be folfox with pump or xelox with pill, or folfiri or xeliri). But, I am assuming it would be folfox. You can ask for the pill instead, but I would also look into and ask about the side effects of iv vs pill 5fu before you make a decision. Best wishes

Oh, one more thing. My insurance paid to have someone come to my house to disconnect me (I called my disco nurse ), that may be an option if you get the pump.

[mike1965]

Dancer0707
I understand how you feel my 1st surgeon told me it was not that bad but he was wrong and it was more advanced. I agree with what the others said in their posts. Chemo sucks but is it necessary to get rid of the evil cancer. I am finishing up my 6th treatment tomorrow. It has been up and down hardest part has been mentally for me. I work a very few hours a week which has been helpful with fatigue. I do not think I could work 40 hrs a week. But each person is different. You just have to see how it goes and see how you feel. I pray all goes well in your treatment.

[WriterGirl1969]

All I remember hearing is "home infusion for 46 hours every two weeks for six months." What is that all about? I still work and am so afraid of the side effects.

Hi Dancer. So sorry you have to be here and to feel that fear. We all know what that's like. I'm going to chime in not to try to push one type of treatment over the other, only to give you perspective.

I'm 47 (just turned), and when my tumor (which I named "Oscar") was removed they found 1 of 17 lymphs positive, so I'm having adjuvent chemo to kill any stray cells lingering around in there. I'm in between rounds at the moment - about to start round 4 of 8 as of Thursday (6/30).

I am the primary income earner for my family, so I opted (after TONS of research) to do the Xeloda, which is the pills. My oncologist opted to not do the oxa (which is combined with Xeloda to make "Xelox") because I have pre-existing neuropathy in both feet.

Rounds 1 and 2 the side effects were mostly fatigue. The heat and sun both make it worse, so I've been keeping my lights off in my office and a small fan on to keep me nice and cool. That has helped. I had some very mild nausea and diarrhea, but nothing too terrible. I found that Omeprazole ("Prilosec") helped more than the Cimetidine ("Tagamet"), and after checking with docs I'm going to try doing both next round since there are studies being done as they think Cimetidine may help keep cancer cells from being able to adhere to the colon wall.

Anywho... Round 3 the fatigue and diarrhea were pretty much nonexistent, but the hand and foot syndrome started in (a common side effect with Xeloda). I noticed some dark spots on my feet. I joked and said they look moldy. That's just the chemo gathering in the small blood vessels there. They started to feel a little blistery, although I didn't have any actual blisters. Drinking more fluids and slathering on lots of cream is keeping it from getting any worse.

This last weekend I went on a short trip to see some family (about a 5 hour drive). They were amazed to find I seemed absolutely normal. So bottom line, I still work a full time job, go on trips, have a life, etc. even with the chemo. No fun, but not necessarily something you can't get through. Try not to let the fear of what might happen overcome you. You might be one of the lucky folks that get through it without many effects at all. Or you may have some, but find ways to deal with them without impacting your life too much.

Best of luck, hugs and prayers, and we're here if you need us.

[BeansMama]

Hi Dancer,

Sorry you are going through this. Take it one day at a time.

I am on round 11 of 12 and worked up until today actually. I have some other issues that have made it difficult to work. I cannot take my pain meds while working and the pain has gotten to be too much.

I was lucky enough to be able to work from home so I could take frequent breaks, sometimes I even worked from bed

The pump really isn't that bad, I forget about it and try to walk off without it all the time. My daughter thinks that is hysterical.

The Oxaliplatin causes the most issues for me. The neuropathy and cold sensitivity are annoying. I keep gloves on top of the refrigerator to put on if I need to get something, and can drink cold things about a week after treatment without the annoying sensation in my throat. My hands always have the cold issue though.

I get Emend with my infusions to combat the nausea and it helps quite a bit. Plus they should have prescribed you nausea meds to take at home.

I had 2 rounds of Avastin but my surgical scars started opening back up with it. My oncologist stopped the Avastin as soon as he saw how much they were opening up.

Overall, it's not that bad, it could be worse. I didn't lose all of my hair, but I sport a crew cut basically because it camouflages the spots I did go bald.

The chemo has worked really well for me so far, Larry^2 (Larry squared) my liver tumors have shrunk and are calcifying. I have gone from if we can burn or resect them to when we are going to do it.

Just remember while it is tough, it is worth it. Remember what you are fighting for. Feel free to pm me if you ever need someone to listen or want to chat. I'm not on often lately but it should be easier now that I am out of work.

[Dancer0707]

Hello, I am back after deciding on Xelox instead of Folfox and am wondering if I made a mistake. Infusion of Oxy on Aug 5 went well with a few side effects but wow, after a few days on those pills (3 in the morning and three in the evening) I got bad pains in my stomach plus miserable diarrhea which all calmed down after doc stopped the pills for a few days. I found out my IBS was highly disturbed by the Xeloda. He lowered the dose to two in the morning and two in the evening. After a few days I developed horrendous, uncontrollable diarrhea (no help from Immodium or Lomotil) which resulted in a hospital visit for fluids and Zofran last Sat I just reported all this to the triage nurse and am waiting for a call back from the doc. Much afraid he is going to put me on Folfox and being tethered to the pump plus more diarrhea problems. What to do, what to do. I am stage 3 after colon resection. 5 lymph node involvement. Will get around to fixing my signature at some point. Thank you all for listening. And BTW, Andy Doc Savage you are my hero!

[mypinkheaven]

Hello, I am back after deciding on Xelox instead of Folfox and am wondering if I made a mistake. Infusion of Oxy on Aug 5 went well with a few side effects but wow, after a few days on those pills (3 in the morning and three in the evening) I got bad pains in my stomach plus miserable diarrhea which all calmed down after doc stopped the pills for a few days. I found out my IBS was highly disturbed by the Xeloda. He lowered the dose to two in the morning and two in the evening. After a few days I developed horrendous, uncontrollable diarrhea (no help from Immodium or Lomotil) which resulted in a hospital visit for fluids and Zofran last Sat I just reported all this to the triage nurse and am waiting for a call back from the doc. Much afraid he is going to put me on Folfox and being tethered to the pump plus more diarrhea problems. What to do, what to do. I am stage 3 after colon resection. 5 lymph node involvement. Will get around to fixing my signature at some point. Thank you all for listening. And BTW, Andy Doc Savage you are my hero!

I also had a really bad time with Xeloda (no oxaliplatin). I was even down to 1000mg a day - pill in the morning, pill in the evening and I still got colon cramps after 5 days. I finally just quit and would have tried the pump, but a CT scan showed some lung spots while on Xeloda, so it didn't seems to be working for me anyway. You might want to consider the pump as some people have had a easier time than with the pills.

[Soccermom2boys]

Dancer, sorry to hear you had such a rough go of it with the Xelox. I am not going to say that being on FOLFOX was a walk in the park, but it was doable. I do not do well taking pills and while I managed ok taking 8 a day back in the fall when I was taking the xeloda with my radiation treatments, I had several instances of gagging and having trouble swallowing those bigger 500 mg ones. So for me, FOLFOX really was my better choice. I personally had zero diarrhea issues while on it, but there are others who definitely had diarrhea from it so who knows how your body will react, but sounds like it couldn't be too much worse than how it reacted to the Xelox. Glad you were able to get the IV fluids in you and recover, keeping hydrated is very important. Keep us posted on what you decide on/end up doing. You will be in my thoughts.

[Dancer0707]

Thank you all for your kind words. I went on the pills because I work two jobs and was trying to spare myself the every two week infusion plus the pain of carrying the pump around for two days. I've got kind of a horror of being attached to something like that, especially at night. The social worker at my doc's office said I'd be unable to work with the pump on, whatever that meant. So I'm off the pills for now until the 24th which is my next infusion of Oxy. Just hoping for the best.

[Soccermom2boys]

Never heard of anyone who couldn't work while attached to the pump--unless your job requires swimming or something submerged in water. Has this social worker actually ever had the pump attached to him/her? I hate when people who have no clue give out responses like that, so frustrating and then sends you off worried for no good reason!

Again, having that pump attached did have a bit of a ball and chain feeling, but truly not that catastrophic in the big scheme. Not sure of your insurance, but when I went to the chemo teaching appt prior to my first round, I asked if I could have the small ball shaped one. Fortunately my insurance approved it. It was no bigger than a tennis ball and easily fit in a pocket and I guarantee you no one knew it was on me unless I would have showed them. I am a high school teacher and never told my students I was going through chemo and they never noticed the little pump either. The ball one does not make noise either. Sure, by the second day you feel it pull on your port a bit, but it's not painful, just a nuisance. I would absolutely recommend you asking if it is possible to get that pump, couldn't hurt. And even if you do the one that comes in a fanny pack of sorts, you can still work--just ask around on this forum, many people will tell you they have worked with the pump. Hang in there dancer!

[BeansMama]

I agree with soccermom, depending on your job there is no reason you cannot work while wearing the pump. My oncologist even told me he had other patients wear the pump to work.

I worked up until round 11, granted I worked from home and have a desk job.

I could see it being difficult if you worked in a warehouse or something of that nature that required lifting etc. But if you talk to your employer they just may work with you. You won't know until you try.

Don't write it off yet, investigate your options.