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First chemo ever...

christeleb's picture
christeleb
Posts: 60
Joined: Apr 2007

Dear friends,

I'm having my 1rst dose of chemo (FOLFOX) on tuesday. Needless to say I'm a bit worried.

What shoudl I expect? will I feel anything?

I will be going home with a pump. What about that? how do you deal with it?

Would love to hear any insights!

Thanks,

Christele

36 yrs old, stage IV, 10 mos old baby

catherine58's picture
catherine58
Posts: 92
Joined: Feb 2007

Hello again Christele

Well done making it to chemo so soon after surgery - it took me nearly 8 weeks!

I think I described some of the side effects I'd had from Folfox in a reply to one of your earlier posts. I was terrified of my first treatment but just wanted to reassure you that it wasn't nearly as bad as I'd expected. There was no pain, no nausea, no extreme fatigue. In fact after the first treatment I thought maybe I'd sail through the course with virtually no side effects. Alas this hasn't been the case, but at least I am managing to look after my children on my own. In an earlier post someone referred to a lady who was running marathons while on Folfox - can't imagine doing this myself, but everyone reacts differently, and I am sure your age and previous good health will be to your advantage. I think often of your cruel situation and my heart bleeds for you - I really hope you can still get a lot of joy from your baby while all these horrible things are going on in your life.

The pump is a pain -although not painFUL - and I still dread each connection, but one gets used to it. It has to be better than being in hospital and away from your baby. I wear it in a "bum bag" all day and put it under the pillow at night (can't say I ever sleep much when I'm connected).

I suppose one just has to take a view that, seen in the context of eternity, the duration of the course is pretty short. By the time your baby is 16 months old it will all be behind you, and you'll be planning a really special Christmas together.

Let me know if I can help you in any way. I've just finished cycle 4 - so nearly half way through!

Courage!

Catherine

KierstenRx's picture
KierstenRx
Posts: 249
Joined: Nov 2006

Christele,
I want you to know that FOLFOX isn't so bad, annoying but not horrible. I'm 32 stage 3 rectal cancer on round 7 of 8 this coming week. The first several treatments were not so bad. I did have the cold sensitivity and tingling immediately following infusion. This would go away in about 5 days. Don't eat or drink anything cold or touch anything cold. Even touching room temperature metal bothers me the first few days. I also have a slight jaw spasm the first couple days after infusion. It only lasts a few seconds after starting to chew.
Fatigue really wasn't an issue the first several treatments. However, as I have gone on it has become more of an issue. I take the day after chemo off work and sleep the whole day. The pump is a pain, but wearing it only a couple days makes it not so bad. I lay it beside me in bed at night and sleep fine. I wear the pump in a bag and hang it across my body and run the tubing underneath my clothing. I haven't had much issue with the pump. In fact I remove the pump myself.
Like the previous post said everyone reacts differently. I was nervous with my first treatment also. I did have nausea and vomiting my first treatment, but it was my own fault for not taking my Zofran quick enough. However, most people don't have vomiting on this treatment. I haven't had anymore since I pretreat with Lorazepam and Zofran.
You will do great. You are young and strong. Even though I have had some problems along the way I have done great compared to others on the same treatment. I have been able to work the whole time and feel pretty much like my old self by the second week.

I will keep you in my prayers.

Kiersten

sladich's picture
sladich
Posts: 430
Joined: May 2007

I was quite nauseaus my first couple of treatments until we found the medicine that worked for me - decadron & ativan for 4 days after they unplugged me. I also did emend. The cold sensitivity was really bad. Each treatment the fatigue was worse and the tingling in my hands and feet. I went through the entire 12 treatments without missing one. The pump was a pain. I was 49, stage 4. You will do fine. You're young.

Debbie

vinny3's picture
vinny3
Posts: 933
Joined: Jun 2006

Well, Christele, you are making rapid progress. I did get premeds, including, Decadron to help lessen the initial side effect of nausea. In fact, the first day I usually felt pretty normal except for lying in bed for 6 hrs for the treatment. Getting some walking exercise is very helpful but then naps are important too. I found that getting golf gloves for each hand really helped in handling cold materials without being too bulky. The fatigue factor seemed to get a little worse with each treatment but I did work on the days I didn't have chemo and even sometimes on the afternoon of the second chemo day. The pump is bothersome, it is like having a ticking clock next to you but is tolerable. I did stop after 9 cycles due to the neuropathy.
Stay positive and feel free to keep asking questions. Enjoy your beautiful baby.

Dick

robinvan's picture
robinvan
Posts: 1014
Joined: May 2007

Hi Christele...

What should I expect? You should expect to be treated by a wonderful team of compassionate and competant chemo nurses. I found them to be great. They answered my questions, reviewed my blood-work with me, and talked about how to cope with side-effects. You should expect to meet some really great cancer survivors like yourself and those in this group. I always enjoyed the conversations and hearing stories of incredible grace and courage. You should also expect timely follow-up to have your pump removed when the chemo is finished. I was lucky enough to have a home-care nurse come to my home to "de-access" my port when the chemo was done.
Will I feel anything? You'll probably feel a little apprehensive, maybe a little excited. You may feel relieved once it's over and you get the sense that "that wasnt so bad..."
My chemo thinking... "I have the bad luck of having this dread cancer!! BUT... there is this medicine that can help me to be well again. It's a very strong medicine and has some unpleasant side-effects. But I can handle the side-effects and live to the fullest extent possible. I understand and accept that this medicine is what I need, and that it will help to make me well."
Blessings to you as you begin this stage of the journey.
Rob
"Cancer is a disease where the patients can contribute a great deal of help themselves; if they can retain their morale and their hopes."
George Carman

kathleenss's picture
kathleenss
Posts: 49
Joined: Nov 2006

Hi, Christele,

I am going in this coming week for round 10 of Folfox. We go into a large room with recliners, TVs. snacks, etc. The nurses are great, and on my first session, another survivor, a much younger woman than I, talked to me about some things to expect while we were receiving our treatments. I guess I am typical, since we're all in the same boat. I am there for about 3-3 1/2 hours on the IV, and then I am hooked up to the pump just before I leave. They gave me a black canvas looking bag for it that you could fasten around your waist or carry on your shoulder with the strap. It was ugly, and I couldn't work the closures very well, so instead I just use a black leather fannypack I already had. This also gives me a place to keep makeup, drivers license, money, cards, etc., so I don't have to carry a purse those two days.

My doctor told me not to drink anything cold after chemo, but I didn't know it worked that fast. I got a sandwich and a coke on the way home, and it felt as if I had swallowed razor blades when I swallowed the drink. That side effect comes on really fast! I keep a pair of lightweight gardening gloves fastened to the door of the fridge on a magnetic clamp. Be sure to wear something that has a large neck opening or buttons up the front so they can connect you up easily.

I didn't really have many side effects for quite a while, other than the sensitivity to cold. I was told to rinse my mouth 4 times a day with a mixture of 1 qt. water, 1 Tbs. salt, and 1 Tbs. baking soda that you mix up and keep in the fridge. I scaled down the amount to smaller portions and replenished them up daily, because refrigerated mouth rinses were NOT something I wanted. By about session 3 I got sores in my mouth, and they gave me a mixture of Maalox, benadryl, and lidocaine to gargle with. Instead, I use a Qtip and just paint it on each sore spot. It really helps. After a while you get really fatigued. You have to be kind to yourself and get the rest you need. Give up some things that aren't really vital to do, let others help you, and rest. I kept working except for the day of chemo and any days I just feel crummy, but I spend my lunch hour with my feet up relaxing in quiet. I was only slightly nauseated one week. My hair thinned slightly, and I actually gained weight. My biggest complaint is that my hair is thin and I'm not!

Take books, sudoku puzzles, crossword puzzles, whatever you enjoy. You'll be there a while. It isn't awful, but I wouldn't want to do any more than I have to. It doesn't last forever. I have to keep telling myself that, because 6 months gets really long.

Good luck, good wishes, and kind thoughts!
Kathleen

83popsong's picture
83popsong
Posts: 28
Joined: Apr 2006

Hi Christele - Lots of good suggestions and thoughts here. I may have already told you, I was Stage IV with mets in both lobes of my liver when I started. I had a total of about 17 FOLFOX treatments split before and after my surgery (Colectomy, RF Ablation to both lobes). I have been NED since August 14, 2006 (Surgery day).

Here's what I can add. I agree it's not that bad. You need to set the time aside and simply not overdue. Sleep when you need to sleep, don't do to much when you feel good. You already have good advice regarding the cold. What helped me was staying hydrated. At first I mixed sparkling water with fruit juice. Don't refrigerate the water and the temperature will be good. You can switch between several juices to mix it up a bit. Also, if staying hydrated becomes a real problem, ask your nurses to give you extra fluids before they give you the pump, or right after they remove it. With the Port you can do 500ml of saline solution in 30-45 minutes. I want to second Rob's comments, the chemo nurses are some of the most wonderful, compassionate people on the planet.

I don't recall anyone else saying so, but the side effects for me became more difficult over time. The worst for me was canker sores under my tongue. Have on hand some "Magic Mouthwash" (no kidding, that's what it's called), a mouthwash laced with Lidocaine. It's prescription, I could get it through my oncologist or the pharmacist at the chemo center. Also, if you use mouthwash, get some that is alcohol free. I couldn't take Listerine after my first treatment. Find a tooth past that works as well, a clean mouth will help keep the canker sores at bay.

The pump is a drag, but don't let the negative comments freak you out. I assume I had the same thing, basically a bottle with a balloon inside and a pressure regulator in the top. No batteries, no moving parts. I used a small bag and attached it to my belt loop during the day. At night a used a small, simple nylon strap (like on a day pack) as a belt and wore it around my upper waist. I learned to sleep on my back for those two nights, and kept the bag/bottle on my tummy. What I found (with trial and error) was that the infusion was shortened by several hours by keeping the bottle warm overnight. I was "hooked up" around 3:00 PM on Wednesday and could be in and unhooked by 9:00 AM on Friday. The bottle and tube can get wet, but the dressing over the port should stay dry. What worked great for me was using a piece of that new super sticky plastic wrap that seals bowls. I found I could stick a piece of that over my shoulder, have it come down and cover the port, enabling me to take a reasonable shower. Use surgical tape to secure it if need be.

Last but not least, keep up the great attitude! These side effects are transient and you are working hard to be sure the crap is really banished from you system. Two thoughts helped me. I sat quietly sometime during the first day of chemo and told my body not to fight it, that these feelings/effects were necessary for the chemo to eradicate the cancer. I also pictured any lingering cancer cells being destroyed by the chemo. I liked to picture Luke Skywalker piloting a "Chemo Fighter" and flying through my liver and blood stream blasting those cancer cells out of town! I'm a mechanical engineer and don't go in for a lot of the touchy feely stuff, but this really helped me.

You are doing great! Keep it up and keep us posted.

--Eben

nanuk's picture
nanuk
Posts: 1363
Joined: Dec 2003

you have all the answers you need from some real troopers..spend monday doing something you absolutely enjoy..peace and best wishes, bud

hoagiemom's picture
hoagiemom
Posts: 87
Joined: Feb 2007

I feel for you. I'm on treatment 7 out of 12 and I didn't think it would come this fast. I'm stage 3 with 2 nodes. I never felt sick even after surgery I felt great. So be prepared to feel sick. I started out working with my pump but realized that it was just to much work. The hardest part is the 1st 3 days after that it gets easier. Don't be nervous it will work out. I cried a lot the first few treatments because I couldn't understand that I had to be sick to be well. Use the support from this message board and family and friends. The good news is the weather is warmer and it help with the cold sensation. Be strong and just think how this medicine is helping you.

Stay Postive and believe...

Michelle

Anonymous user (not verified)

Christeleb,
I am currently in the middle of my seventh cycle of Folfox...48 stage 3 colon...make sure you take all the medicines the doctors prescribe...they know what they are doing!! I saw others recommended the gloves...one of my nurses said eat with plastic utensils...that really seems to help with the metallic taste...I also found it very useful to continue the anti-nausea meds for a full day after chemo stops...that seems to be my worst day...all in all I feel lucky to be able to do the home treatment...the nurse who comes to "disconnect" is wonderful. I savor the off weeks, but know the end of chemo is in sight. God bless you and I hope this is a "not-so-bad" experience for you!
Peace,
Marge

mackabee's picture
mackabee
Posts: 6
Joined: May 2007

Christeleb, you have all the info you need. I did the Folfox 6 with Avastin for 6 months, twelve sessions every other week. The worst part for me was probably the fatigue and neuropathy and also the sensitivity to cold. I remember going to the Stone cold creamery for a bowl of ice cream and one side of my face literally froze. The ice cream tasted good initially but then it felt like millions of prickly needles on my lips and tongue. The worse part has been the neuropathy. I stopped my chemo in November of last year and my feet and hands have not gotten back to normal and they may not. Only time will tell. The Avastin may cause blood clots which it did on me which caused me to skip a cycle and then resumed after treatment as my blood counts were very low. That happened a couple of times where I did not have a cycle due to low blood counts. The danger here is neutropenia which makes you subceptible to opportunistic infections like pneumonia. I was lucky I didn't get sick and made it through. We are all pulling for you!
Vic

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