Thoughts

[TBone]

Hi everybody,

Thanks for all your posts concerning my leg pain.I have a very slight pain this morning but nothing to complain about.I have been struggling with my decision to take chemotherapy and just thought I would take a minute to share and hopefully get some feedback from those of you that have been there.I had the port put in and am supposed to start chemo next week.I don't even know what type chemo I will start on.I am just so afraid to start it.The radiation got me down so bad that I had very little actual "feel good" time during the whole thing.Very little real quality time with family.Even in Florida I was in too much pain to do all I wanted to do.I have another vacation to Florida planned for June.Another fishing trip for the whole family.If I start chemo next week all that could be destroyed.Is putting chemo off for a month and enjoying some pain free time with the family putting me too far behind the 8 ball as far as the battle with this disease goes?Should I go ahead with the chemo next week and hope that I can do the vacation?I just have this picture of anybody on chemo as a very sick person.Does anybody take it without being sick all the time?All the chemo patients that I see on my many trips to the doctor just look so miserable.I guess maybe I am chicken.Praying for us all.TBone

[Guest bean_si (Not Active)]

TBone

It wasn't as bad as I expected - not half. And, believe me, I was terrified of chemo after all I'd heard. But things change and chemo has too as long as the dose you are given is not that great. They give you medicine for nausea which you should be sure to take or ask for if it's not automatically given. What I hated was sitting there for hours with the blooming IV drip drip dripping. I did have intense fatigue but probably because I was having radiation at the same time.

I don't know what to say as to the best choice. I think deep down, if we listen to ourselves, we know the answers to questions such as this.

Heck, I'm one to talk. I'm still waffling on the WBR, given my history of stroke and brain damage and memory problems while my onc is pushing me to get it.

These decisions really do have us caught between a rock and a hard place.

I wish you well. Best luck with your decision.

[Ry]

Oh T. I think you'll be very surprised. You're going to have some down days but you can work your trip in. John was usually extremely tired the 2nd to 3rd day starting after chemo (depending on which one). He never vomited on any of the chemos just had the overwhelming fatigue, and body aches and cramps (drinking lot's of water helps, before, during, and after chemo). Hopefully he'll chime in here and tell you himself about it. We did a lot of things as a family while he was doing chemo. As a matter of fact, the picture of us you see to the left was taken at a wedding while he was on chemo. Does he look that sick to you?

When John was first diagnosed our family doctor told us that everyone would work around us. That we should plan trips and do whatever we wanted and they would schedule their things around ours. So when you go to start the chemo, tell them your plans for the trip. they'll deal with it.

Good Luck T

Rochelle

[ginnyde]

Tbone,

Tough decision. Time with your family is very, very important. When Earl was first dx'd, my daughter called a bunch of her friends that are doctors. Every one of them said, don't let your mother or the doctors delay any treatment. It is important to fight this disease quickly.

That said, I agree with Ry that you can work this vaca around your treatments. Earl was not sick during chemo, just exhausted.

Glad to hear that the pain is manageable.

Ginny

[Angie Daughter of Bill]

TBone

I wish that my Dad would get on the computer, but he won't touch this thing. Therefore, I will post his expeience for you. When Dad was diagnosed, he said NO CHEMO! (LOUD AND CLEAR!!) After taking about three weeks to think about it, he changed his mind. He has been on Carbo/Taxol...........three rounds complete, about to start the fourth round. He has had NO sickness at all. He has had very little fatigue. Be sure to ask for a powerful anti-nausea drug IV when you get your chemo and also some to take home with you in pill form. I have found that chemo is not what it used to be. There are so many drugs available to counteract the side effects. There are drugs for nausea, drugs to boost your blood counts, etc. Go for the chemo...........schedule it around your trips and have a wonderful time. You deserve it. By the way, as an added bonus, the chemo will probably shrink down that tumor in your abdomen and relieve that leg pain...............making it possible for you to thoroughly enjoy your vacation. If you do start chemo and it does effect you too much, you can always stop. YOU have that power! Let us know what you decide. I will be praying for you!

Angie

[shelliemacs]

my mom and dads chemo experiance

mom NSCLC - carbo/taxol tired for a few days then some joint pain for about 4 days then ok,

dad SCLC - platinol/vp-16 tired and sleeps for 3 days then fine, gets tired after a full day but did bounce back.

[Mr Ry]

As usual I agree with Rochelle. It is not pretty when we do not agree. I started the attack on this disease one day after my dx. The doctors were very aggressive because of the involvement of the Vena Cava. The only break I took was from radiation/chemo to see if I could have surgery. The doctors made adjustments according to my schedule or how I was feeling.

The only chemo that hit me the same day as my treatment was Gemzar. When I was down I was down about three days. I will tell you that everyone reacts to chemo differently. I felt lucky that fatigue was really my only symptom. Procrite injections helped boost my energy some. I tell you though none of the chemo was fun. Being down three days out of three weeks is not bad.

Be very careful of fevers. See your doctor if it is 101 or higher. I made the mistake of taking Tylenol and not telling them. I ended up in the hospital with really low white blood cell count. It was 1 and anything below 11 is low. They could have helped me if I had told them sooner.

I have gotten extra time with my family because I was put on disability insurance right away. Enjoy all your time with your family, but keep up the battle so you can have more time with them. My advice is stay with the battle and make small adjustments in your treatment as needed. I feel that eight weeks off is a bit too long. Good luck with your decision. John

[chloesmom]

T:

I think you should express your concerns to your onc. When I was planning chemo with my onc, she took into account my plans to attend a conference in Colorado midway through my treatments. We just took that as a given for an off week and worked from there.

I was not nearly as miserable as I thought I would be during chemo. This has all come a long way. They inject anti-nausea meds into your iv and give you prescriptions for anti-nausea meds that, in my experience, pretty much keep you feeling ok if you take them BEFORE you get sick.

I had cisplatin and gemzar. I know cisplatin is supposed to be pretty rough, and it was, but I worked the entire time I was taking chemo. Everybody reacts differently, but I sure do wish you'd talk to your doctor before you postpone treatment--

Good luck.

[Andrea]

Tbone,

While everyone is different, my mom "liked" chemo better than radiation. At first she thought it would have been opposite and like you envisioned being sick all the time. She did great though. There were a couple of days after a chemo treatment that she was really tired and weak. But otherwise, overall, things were ok. The nausea got bad during the second week, and the dr gave her what I call a "magic pill" to take a couple of days after each treatment and it was a miracle. The only do wnside to the magic pill is that it makes your blood sugar go up. My mom is diabetic, so at diagnosis we had to get that under control before she could get the magic pill. All they did was switch her form pills to insulin, gave her the pill each time and no more nausea.

I say go for the chemo. The more aggressive the better. What does the dr say?

[mhutch1366]

TBone,

I like the advice you've gotten here.

I for the most part agree wholeheartedly.

Point is, do you?

Do what you feel you need to do, and we're here for you.

Just because I believe in aggressive chemo doesn't mean you have to.

Glad your leg pain is much much better.

XOXOX

MaryAnn

[dadstimeon]

Hi T,

Just my two cents. I would first ask the doctor what impact it would have on your battle, delaying/not having chemo and go from there. I would try the chemo. They have come a long way with chemo and medications to off set it. If the means justify the end then it is worth. You can always stop and try another chemo or stop all together. My doctor always has another chemo for me to try just in case one does not work. Of course everyone's treatments are different. Other then my platelets dropping and getting 2 transfusions at the beginning I have had no side effects what so ever with any of them. So you never know. Just let them know of any problems. Do not keep it from them. They can make adjustments with the chemo or the schedule. I’ve been on chemo since Dec, 2002 and everyone says I do not look sick, act sick or sound sick. Nobody would know unless I told them. Of course it does make one tired as well as the cancer. But it is mind over matter. Just adjust and do what you can do, not what you can’t do. Take it one step and one day at a time. Stay positive, stay focused. Hope this helps. But it is your decision to make and should be respected by all. Good luck in you decision. Peace, take care and God Bless.

Rich

[rick m]

hi tbone...as far as my chemo is going i have had really no problems. i was scared to at what it may do, but bout the only thing with me is a little tired..not the type of tired that i gotta put my head down and go to sleep, just the type that , well i am not gonna have the energy to run a mile....i say try it...

[Margaret]

Hi,

I guess I am surprised that you weren't advised as to what chemo drug you would be given. My first go with chemo was terrifying (carbo/taxol) and it did put me into overwhelming fatigue some of the times in the cycle. My main problem was neuropathy (but that hit me exceptionally hard) and so my doctor changed me to carbo/taxotere. I experienced a lot of joint/muscle pain, but never any nausea. I did lose all my hair within a month, but turbans worked for me. What I do say is that they have tremendous premeds with chemo now.

When I had to drop out of orally taken chemo clinical trial, I was blubbery about going back to infusion; however, I must say that I am experiencing minimal side effects with Gemcitabine (Gemzar), but as they say, everyone is individual in reaction. I have never had any radiation and that may make a difference. My life is quite normal on this chemo and I only go one day a week for two weeks and then off one week.

Additionally, I think being on Celebrex has helped my a great deal with the shoulder/neck etc. pain I had been experiencing. Plus my doctor has me on 400mg a day so that if the possibility that it reduces growth of colon/lung tumors proves to be correct, it gives me just another level of comfort.

These decisions are mind wrenching, but you have resources for information. I have come a long way in being informed and, if I had it to do over, I would have asked to stop my first chemo after 4 treatments...I don't think the last two did me the good to compensate for the difficulty. There is the theory out there that less intensive chemo can be effective and that's what I choose in this last decision making.

I pray for you to have the strength and wisdom to make your decision with confidence...make your doctor fully inform you of options and not just declare that this is the route to go.

God's Blessings,

Margaret

[TBone]

Hi everybody,

Thanks so much for all the responses to this.I am taking the advice of most of you and going on with the chemo.It would be stupid for me not to.I can work with the Dr on the schedule.I can change the vacation.There are lots of options that I was just not really looking at.My mind has been on my leg pain for too long..The important thing is to keep throwing something at the beast and I intend to do that.So thanks again.I needed this.Praying for us all.TBone

[sharyn]

Tbone - Daddy started off with Taxol - then moved to Carbo/Gemzar - NO SIDE EFFECTS from any of them... Only loss of hair. He behaved as thought he was not ill at all.... Wishing you the very best. Love, Sharon

[Guest Phyllis]

Hi, I have been on different chemos with few side effects. However, on the carbo/taxol regimen I felt great the first 3 weeks. The last two rounds I have been more tired due to it really does a number on your blood counts, which is what I wanted. I have worked all along except for a day or two here or there, but I have been really pushing the envelope. At this point I crave some total rest. I also walk at least twice a day, mow the lawn, etc.

I think a lot of it just depends on the chemo, how physically fit you are (I am pretty healthy and always maintain my weight), I am 49 about to be 50. I think I could travel some right now, but I would not like to take an extended vacation right now since I am never sure what side effects I might have with this chemo. I don't know if that helps, but I hope you get to take a vacation. If I had a choice personally I would start the chemo immediately. Good luck.

[S. Jane]

I'll bet you feel good with your decision T-Bone. My Dad "Chick" had carboplatin/V16 and said the radiation was worse than the chemo. He understood his own pattern of fatigue and discomfort and had some good days and some bad. When they combined the chemo and the radiation THAT was tough! He has also said the absolute worse side effect no one talked to him about was constipation. Why does no one talk about that one? You would laugh at the concoctions I would make him to help him out. He was a good sport! When he got use to his schedule, he was very proactive about it. So, there is my two cents.

Jane

[Lea]

I am little late here. But, I am glad you are doing the chemo. I agree with the rest of the group in that, my husband did not feel sick---simply fatigued. The fatigue strikes the second days and lasts about three days. He did need a transfusion last time to feel better.

[Melinda]

TBone,

I am a little late responding here. Sorry.

When my mom had chemo for her first round with breast cancer over 12 years ago--it was AWFUL!!! (Really--her stories make you want to crawl under the sofa.) And she's no shrinking violet (she didn't even tell anybody that she HAD cancer until she couldn't deny it entirely in a "stiff upper-lip fashion" any more b/c her hair all fell out. Even then, she only told immediate family and two friends--and let everybody else guess. This was before everyone was running around bedecked with pink ribbons, etc.). She said it was worse than the radiation and the surgery combined.

Therefore, we were terrified when both she and Geoff's mom were dx'd this year.

However, 12 years is "light years" (her words) in medical technology (even though there are some days when it really does seem like cancer research has been getting nowhere, fast).

Geoff's mom didn't seem to have ANY side effects to her 3 weeks of chemo that she had when she was getting her chest radiated. Really. NONE. I was in shock. It was the chest RADIATION that made her miserable (esp. her esophagus). (And she was treated by the same onc. as my mom was 12 years ago!)

That being said, there are different meds and doses of chemo and each person is an INDIVIDUAL who may respond differently to the treatment. It is your life and your body--only you know how you feel (physically and emotionally).

After what I've seen with "my two moms", however, I would say that chemo is worth giving a shot--esp. when the cancer is systemic. It is one of our best weapons in the arsenal, at the moment, for keeping us "stable".

I am so very sorry that you have been in so much pain, TBone. Please PM me if there is anything we can do--or if you woulod like to talk with any of us in greater detail about chemo.

Melinda

[mayos]

Like some of the others....if it were my choice....I'd choose to go with the chemo very soon. You've suffered through radiation treatments already....chemo could be a cakewalk for you. As you probably know from prior posts...chemo is cumulative and it's possible the first couple rounds may not faze you at all. We're all living inside different bodies....so it can go either way I suppose. But please think about delaying treatment TBone...we want to have you around for a long time to come.

[TeeTaa]

First of all, WHEN THE HECK IS THIS IMPENDING "FAMILY" VACATION YOU'RE TALKING ABOUT?!?! You're not trying to keep something from your baby sister, ARE YOU?!?! I was kicking myself around the block for not being able to go with y'all last month - but June looks much more promising. It's a good thing I'm headed down to see you tomorrow so I can get the straight scoop.

As far as the chemo is concerned . . . I recognize your concerns, and share them. But I hope you take the advice of most of these wonderful people, and be aggressive. You've already made it through the WBR and that horrible chest radiation, and it might just be that whatever chemo they do put you on (and I think they mentioned Carbo/Taxol to ViVi) isn't so bad for you. And if it is, just stop it, go on vacation, then come home and try something else. And heck - you've already lost your hair, so that's not even an issue any more! Of course I'm a bit selfish (I am the baby, you know!), but I want you to do ANYTHING AND EVERYTHING to stick around long enough for our prayers to be answered. But you know I'll support you no matter what your decision is.

Love you - and hope you're feeling a bunch better by the time you read this than you were when you e-mailed me earlier today. It just ain't right for you to feel so crappy!

One more thing . . . where are we going in June?

Love you most,

TeeTaa

[Carleen]

Hey T

Glad to hear that you decided to go ahead with the chemo. You've received so much good advice and personal experiences here.

As far as Keith's experiences, Chemo was a peice of cake compared to what he is feeling doing chest radiation. It also depends on the chemo drugs used, they have different side effects. His first chemo barely affected him. He used to say it was like having a 3 day hangover. He was a little tired, but not enough to limit any of his activities and his appetite was a little off, but not enough to stop him from making a whole pizza disappear if it was from Neds (his favorite place). He had fatigue, but nothing like now with the radiation. He had some nausea, never any vomiting and usually only for a few days following treatment. Again, nothing as serious as now with the radiation.

With luck, chemo will be kind to you, and help you alleviate some of the remaining discomfort you have. I am praying for you and hope you have a wonderful vacation.