Getting closer

Denise1966

Hi everyone, Just wanted to give you my update. On 3-25 I hd my port put in, getting the port put in was not too bad.(I had the doc knock me out for that)Major wimp!!!!! I went for my radiation markings and then this friday I'm going for my chemo class and radiation films(whatever that is).
I get to start both chemo and rad 4-7-08 a little nervous about all that. The oncologist told me I would have the pump 5 days a week (it's the 5fu chemo) hopefully no side effects. The radiation is everyday for the same amount of time. Other than that just trying to keep my mind off of all this and keep my strength up....I've been eating everything in sight! Hopefully I can keep that up through the chemo. Any words of advise on all this would be appreciated.

tootsie1

Denise, I haven't been through chemo, so I can't say anything about the experience, but I would say that you can look at this as the beginning of getting well. Yay for that, right? I hope it's not too bad and has no side effects for you.

Gail

StacyGleaso

Denise,

Your story sounds EXACTLY like mine over 6 YEARS AGO! Stay strong! I had absolutely NO side effects from chemo or radiation. I was convinced they had given me a placebo!

You can get through this! I promise. Drop me an email if I can help you further. I'm no expert, but I am a survivor!

Hugs,

Stacy (Stage 4 with Liver Mets, 6 and a half yrs ago)

kristasplace

Congratulations Denise! You're off to a great start! It sounds like you're going to be going through exactly the same treatment i'm having. I had the five day 5FU pump, along with radiation every day. I tolerated the 5FU fairly well. The only major side effect was a weird rash-like hue to my skin, and i got really bad sunburns on my hands. Beware of the sun on that chemo! You can get third degree burns without even knowing it. The radiation was another story for me. I got radiation cystitis so bad i had to be catherterized for several days, and i still have problems with my bladder as a result. Plus the radiation made me sick, and very, very tired all the time. Thank God i only had to do it for seven weeks! My doctors gave me the full 12 weeks to recover from that before they did my surgery. I was more afraid of the surgery than anything, and it really wasn't much fun, but now that it's behind me, i feel better than i have in YEARS! I just started my adjuvant chemo two weeks ago, and the side effects are typical, and so far, not so bad. For the first time in my life i actually feel like doing things. I don't know about you, but i was symptomatic for two years before my diagnosis, and had cancer for about five years total, so feeling well is a new feeling for me. You have a lot to look forward to in the way of good health, so just try to look at the bumps in the road as a sort of adventure that you can write home about later. A great attitude is the key to success, and it sounds like you already have that.

Keep us updated on how you're doing, and what adjuvant they have planned for you. I'm doing the FOLFOX 6, and i imagine they may for you too.

Many hugs,
Krista

pamness

Glad things went well having the port put in, the pump is a little wierd but you get really used to it. I did 6 weeks with the pump (5FU) and the radiation. I did it after surgery and chemo. For me radiation and the 5FU wasn't too bad. I didn't even get any skin burns. I did have to take a week off in the middle because my counts were off, but I went back and finished. By the end of radiation you may find that you are lactose intolerant but that goes away, I was told it kills some bacteria that let you digest milk. Towards the end I had to go on what I called "the white food diet" if it was white and bland I could eat it because my colon was pretty irritated, but I had had a lot of treatment at that point. They had me put Aquafor on my back where my radiation marks were, it seems to have worked. They had me start that in the beginning. I went out to lunch most days after radiation since my time slot was 11:30. All in all this part wasn't too bad.
A piece of advice - I had a real tendency to take my pump off my shoulder and put it on a table and then stand up and walk away. Once I got out of a taxi left it on the seat and shut the door, I was just glad there was traffic so the taxi didn't zoom off!!

LynnN

Thanks for the update. I have been thinking about you and wondering how things were going. It seems to have all happened so quickly! I am sure that you are overwhelmed with all that is happening and hope you find comfort coming here as there is always someone who has "been there, done that". The old saying that everyone reacts differently to the treatment is quite true but you sound upbeat and attitude is everything!!!! Take care and keep in touch....

chynabear

LynnN said:

Thanks for the update. I have been thinking about you and wondering how things were going. It seems to have all happened so quickly! I am sure that you are overwhelmed with all that is happening and hope you find comfort coming here as there is always someone who has "been there, done that". The old saying that everyone reacts differently to the treatment is quite true but you sound upbeat and attitude is everything!!!! Take care and keep in touch....

I haven't had any experience with radiation, so hopefully you pick up enough tips from the others.

I would say you are on a great track in finding out ahead of time what you need to do. Here is my advice, I'm sorry if is repeated as I am tired and didn't read all of the responses:

Drink a lot of water. Drink a lot of water. Did I mention, drink a lot of water? If you are getting folfox: 5-fu, leukovorin, and oxilaplatin (sorry for spelling) you will be sensitive to cold. Make sure you have gloves for freezer/fridge and drinks are room warm or so. Believe me, the drinks at room temp will feel like they are ice cold. Anything ice cold will be agony... you won't make that mistake too often.

Have plenty of immodium for diahrea and take at the first sign of loose bm. If immodium doesn't work, ask doc for something else. On the other hand, have something for constipation. I remember switching back-and-forth rather often from one extreme to the other.

Have plenty of anti-nausea meds... I suggest a light-moderate and a heavy duty. The heavy duty is usually very expensive, but you will want a few on hand if you need them. Again, take at the first sign.

Keep on top of your side effects.

Have a plan for a mouth rinse to avoid mouth sores (again, esp if you are on folfox).

Don't be afraid to ask your medical team questions and inform them of anything going on with your system.

Have comfy clothes on hand.

Try to eat a healthy, balanced diet... but when all else fails, eat whatever you can to make you feel better. Often, bland foods or comfort foods work well.

Rest.

I hope this isn't too much. Take care and let us know if you have any questions or just want to talk.

claud1951

HI Denise,

Hey, I had them knock me out, too, when my port was put in and taken out!

While I did not have Rads (had the IV chemo cocktail), I did wear the pump for 46 hours after the IV.

Pump wasn't a problem for me, either. (I wore the pump like a fanny pack)

I would say that you'll get tired. The number one side effect is fatigue from Chemo. Just make sure you listen to your body that way. If you have to sit down or lay down, just do it! You'll feel much better if you do. To me, resting felt healing.

I agree with the others about the sun and chemo. Had my chemo last summer and I thought I was so smart working in the yard. Had my hat on and sun screen on face. Had my blouse with long sleeves (but rolled the sleeves up a bit, and gloves on hands.

Guess what? I forgot to put sunscreen on that little bit of skin that showed on my arms and now I have these sun spots. Live and learn!

Drink water, water, water!!! Always have water with you. It will get rid of the toxins.

Oh, something else. The people that will support you (caregivers). Give them something to do. They'll love it. People want to do something for you but don't know what. Even if it something "little" they will feel better they got to help you. (if you're like me, I'd say, "oh, I can do it" Well...I learned fast that either I couldn't do it or they really wanted to help)

Ummm, think that's it! Let us know how you are doing. Your attitude is half the battle! Keep it up and let others know you are not afaid to "talk about it"! You can educate them as well.

Here's to your energy. May it keep you moving forward!

Claudia