Treatment Starts Two More Days

[ursol]

This Tuesday I finally start treatment (Paclitaxel and Carboplatin-once per week and Radiation daily). This will go on for 7 weeks and then I will be scanned and if all goes well onto surgery. I'm getting nervous because the unknown is scary. I'm attempting to work through this with only Chemo Day off. I worry that I'll be much sicker than I want to be. I'm also worried that the kids will start to feel different towards me especially if I seem fatigued and not my normal self. I mostly worry about my husband, I really need his help right now and he started off supportive and now he seems angry at me all the time. He doesn't like people to come over, yet starting Tuesday I will really need the help and support of my family and friends especially if he doesn't help as much as I need but yet I know people coming over will just annoy him. There are days I get soo frustrated I think I should just go live with my mom so she could take care of me. Then I realize that's crazy..I have a life, a house, a job, three beautiful children and I need to keep it together through this new challenge in my life.

Anyhow, anyone that can give me advice for the start of my treatments, feel free. I'm hoping the oncologist goes over the do's and don'ts of my chemo when I'm there tuesday as they have not done that yet.

Lilly

[chloesmom]

Lily,

I did not have your chemo combination, so I can't speak to that specifically, but when I had chemo, I really didn't have a lot of problems.

Remember to take your nausea meds before you get feeling bad. I took mine for three days after every chemo whether I felt sick or not. It's hard to stop the nausea once it starts.

Try to drink a lot of water. That helps flush the chemo out of your system and you don't want to become dehydrated, which can happen easily if you have nausea or diarrhea (sp?).

Try to keep something in your stomach at all times. I found that snacking on things like crackers, fruit, jello, popsicles, soup, etc was better than trying to sit down to a full meal.

Talk to your onc or their nurse about this, but a stool softener daily would be wise if they give the ok. I took one every day throughout the whole time I was on chemo and it prevented some problems.

If you can, get some exercise. It's really helpful.

I did work throughout my chemo treatments, but I also rested whenever I could. Don't overdo. Your body needs time to bounce back from the treatments and build up your blood counts.

They will go over all the details with you at your appointment. Expect to be there a long time on the first treatment day.

Good luck,

Cindy

[dadstimeon]

Lily, Great advice from Cindy, and as mentioned on the exercise, keep moving, keep busy the best way you can. Prayers for the best. Rich

[Connie22]

Lilly

The advice from Cindy is wonderful. This is the same combo my mom had with radiation, and she never had any trouble. She never even lost her hair. She did all the things that Cindy recommended, and we made sure that she got her rest. Keep a nice positive attitude!! Good luck and many prayers.

Connie

[Welthy]

Lilly,

Same treatment as my husband first received. His was once every 21 days though for 8 cycles. Fluids, fluids, fluids, cannot be stressed enough. I made a chart for hubby (and me) so he could check how many glasses of fluids he had per day. Also, B-6 worked for him in terms of no neuropathy in his arms or legs. Up to 600 mg per day. Check with your Doc, but that is what ours suggested. As for your husband, fear has a way of making those around the patient act out in weird ways. I know it's hard, but try and cut him some extra slack too (or maybe just hit him upside the head with a 2 x 4!)

Good luck and may God bless!

Welthy

[marym]

The other item I would add is to try and take a nap every day. Even if you are only resting for an hour, it will make a difference. Radiation can really wear you out.

Mary

[blaze100]

Hi Lilly,

When you go in for chemo, your onc will have perscriptions for anti-nausea and other stuff that will need filled after treatment. It is much easier if you can pick up the perscriptions and fill them the day before treatment.

Many people do chemo on Fridays as it leaves weekend to rest.

I used up most of my sick leave because I had to drive 80 miles one way everyday for radiation. Unpaid family leave is another option (I think it is fed law). You now fall under the Americans with Disabilities Act.

I avoided contact with most well-meaning coworkers and friends as they often said and did things that upset me more than helped.

I drove myself to chemo sometimes too. Don't tell the doc as you are not supposed to drive after chemo.

Just a few drops of the taxol made me stop breathing and everyone got excited yelling "code blue". Since then I've heard it is not uncommon to have bad reaction to the taxol stuff, so be sure someone is with you when they start the pacitaxol drip (nurse should stay but might not) so if you start to get slightest bit flushed or feel hot have them stop drip immediately.

Bring some grapes or chips to chemo, some to share if you want to make quick friends. Something in the drip causes extreme muchies.

Your hair might not dropout, just look around at other folks in infusion room, you will see many have hair. Some just lose hair on top and wear a cap to cover bald spot.

I was really dragging the last week of chemo and radiation. I've always been physically very strong, so when I started feeling weak it increased my fear/anxiety temendously. Green ice tea kept me going.

The radiation can burn the inside of throat. I had no problems but my secret was a milkshake immediately after radiation everyday. IT worked!

Well Lilly, sorry this is so long. I wish you best of luck with treatments. Barb

[Don M]

Hi Lilly:

I have heard that having radiation concurrent with chemo is harder than either one alone. But, perhaps you are not receiving heavy radiation since the intent is to do surgery later. You might want to check on this. Your surgeon and radiation oncologist have to be on the same page. Some surgeons won't do surgery if there has been too much radiation because of changes to the consistency of the lung.

I see you are getting chemo once a week. I think they must lower the dosage there too compared to infusion every 3 weeks. Maybe both the radiation and chemo are not as intense when surgery is intended as a follow-up. You may be able to keep working.

As far as working goes, I think I could have done it when I had my last chemo, worked every day that is, but I chose not to. I had a lot of sick leave coming and I used it for 2 or 3 days for each infusion.

I hope your husband come around. I suspect he is unhappy that the routine of home life could be changed. Just give him a little time and patience.

Don M

[rvillella]

I had concurrent radiation and chemo the big difference for me was the surgery was first. I know once I started feeling strong enough from the surgery they started the daily radiation treatments and the once a week chemo. My Onc kept the chemo low during the radiation and then I had 2 larger doses 3 weeks apart three weeks after my last radiation and chemo treatment. I found I was mostly tired from the radiation and the chemo. I went back to work when they released me from the surgical side and I put in up to 30 hours per week. It can be done as long as you don't overdo it. I'll keep you in my prayers.

Ralph

[meredith]

Hi there.

I had radiation concurrent with chemo (cisplatin/irinotecan). It was tough on me, but then everyone is so different. The good news is that chemo combined with radiation tends to be more effective than either one alone for a variety of cancers.

I know the unknown is scary, but try not to be too worried. It's very do-able.

As far as practical advice: keep up with your anti-nausea meds and take them regularly as prescribed. With new medications, you should not have to experience uncontrolled nausea and vomiting. Also, rest as much as you can, as others have mentioned. I know it may be more difficult in your case, as you have 3 children, but perhaps there are people to help?

Good luck with your treatments! We are here for you.

[ursol]

Thanks to everyone for the tips..

I have the prescriptions for the Nausea and had those filled this week.

I was told that the Chemo will be a low dose while the radiation will be aggressive. The Radiation oncologist, medical oncologist and my thoracic surgeon are on the same team and the surgeon is not concerned about doing the surgery after aggressive radiation. Based on what I had read here on the message boards I knew that sometimes scarring could prevent surgery so I asked the question. My surgeon is very comfortable with the surgery and said he has done many that are similar while at UNC prior to coming to Yale.

Thanks for the Milkshake tip, I'm going to try that (I'm probably most frightened about the esophagus). When I was pregnant with my daughter last year, the Acid Reflux was so bad that I was vomiting blood, it was very painful and the thought of having my Esophagus burn is already bringing all that back to me.

Thanks again,

Lilly

[Connie B]

Lilly,

How did your first day go? Just wanted to let you know I'm out here cheering for you. Hope all went A-OKAY!

[carolhg]

I had chemo concurrent with radiation followed by surgery. After surgery adjuvant chemo. I am doing great today and you will too. Keep drinking that water.

[ztweb]

Lilly,

I am so sorry that you are going through this. I have no advice for the chemo, other than to drink lots and lots of fluids and take it easy. You certainly have a job ahead of you with three children and a husband. It sounds like your husband is more frustrated with the situation and not with you. Be sure you two are communicating. That will help to pull you through. Do you all pray? Praying together might help too, as then he can understand what you are feeling and that you are devastated at what this is doing to your family. He well knows that you are likely the glue of the family, and that is scary to think of that rock getting moved even by an inch!

God bless and best of luck!

Jen

[ursol]

It's day two of treatment and I'm doing okay...

Day 1 was definitely an adventure..I was at the clinic from 9:30 to 5:00 PM. I started off with an appt. with my medical oncologist and then whisked off to the treatment area, while I waited I went for a massage and then after several attempts to get the IV into my wrist the fire alarm went off and we were all evacuated until the fire department called all clear. My chemo started at 1:30 PM with the Taxol. soon into it I had an allergic reaction. They had to stop it and after much discussion, they gave me more benadryl and resumed at a slower pace. I got through that then the Carbo with no issues by 4:15 and then I was sent on to Radiation. This morning I went to work, took my nausea meds and did okay with the exception of many trips to the bathroom.

I just got back from radiation and cannot wait to go to sleep.

I hope I can continue to feel okay...

[Treebywater]

((((ursol)))) Thank you for the update.

[ztweb]

Drink lots and lots of water. Eat whenever and whatever tastes good. Rest when you feel like it, don't rest when you don't feel like it. Pray, pray, pray, and seek all the support you can get...

Those are just the things I think I would pass on!!!

God bless,

Jen

[Connie B]

Wow Lilly, that's what I would call a BANG EM UP FIRST DAY OF CHEMO AND RADIATION! !!!!

I guess I'm glad to hear it all appeared to come out okay for you. ((((LILLY)))))

Okay, so the first day wasn't the greatest, that can only mean it's UP HILL from here!

Glad to hear your first day went well, and I hope today went well also. Good luck tomorrow.

I'm keeping you in my prayers.

[blaze100]

Hi Lillian, The first day is hard, but you will get into a routine and time will fly by. It is so easy to make friends in the waiting rooms, as it seems like the same group of folks are there the same times everyday.

I really miss the friends I made in treatment.

Best of luck to you Lillian, Barb

[carolhg]

I am so glad that you have gotten started with your treatment. It seems easier once you get started and not just thinking about it. I remember my first day of chemo. I went in there and once they hooked me up I just started to cry. There was a woman there who I had seen several nurses around her chair moments earlier. When the nurses left she came over to console me. She thought I was afraid because she was having a bad reaction to the chemo. I was just scared because I was having chemo. Long story short, she is a breast cancer survivor and today we are both cancer free and have become the best of friends.

[Guest nonni]

Hi Lilly...good luck with your treatments....the kids here will let you know everything you want to know...so keep posting and keep asking...and tell the hb to get lost for a while when he starts acting up....don't worry...he'll come around...hugs..PamS.