Afraid of the future

Bravesoul

Diagnosed 09/11/03. Operated on 10/28/03. Nearly died following surgery and had to
remain in hospital all of November. No oncologist would start chemo because I was in such
bad shape. Scheduled to start the Roswll Park treatment of 5FI and Leucovorin on 03/03/04
(tomorrow) with 6 weeks on and 2 weeks off in 3 cycles. I'm really frightened since all the
doctors said I'm starting too late and the Stage IIIC cancer has already spread (they are
looking for new tumors elsewhere). I suffer from severe neuropathy and GI problems and
am malnourished. The doctor administering treatment has been honest about not believing
it to be of use, but my fear is how the treatment will affect me. Everyone I've spoken with
who has had chemo has suffered terribly. While the doctors say side effects are mild the
people I spoke with and in chat rooms say the effects are severe. I'm frightened and I'm
alone. Even my Church forgot about me once I wasn't able to actively participate and I've
been so sick that I haven't been able to go to Church anyway. I must take public transportation
and go for treatment by myself. Am I going to be capable of doing this? Am I going to be
able to attend to things in daily life or will I be totally incapacitated? I don't mean to sound
childish but I really haven't heard anything good about chemo and I don't know what to
expect for myself and how to manage? Can anyone give me advice and support? I need
help.

nanuk

You are definitely a Bravesoul for surviving and going on in spite of your difficulties. The Chemo
affects us all differently; likely someone who is
on your particular protocol will respond to your
questions about side effects. So far as the transportation, you might want to contact your local Dept. of Social Services or The Cancer Society in your area- usually there are organizations that provide transportation for patients. Your treatment center might be able to connect you with someone to ride with. Keep posting here, and you will find a lot of support and caring. Hugs, Bud

Unknown

Welcome to our group of "semi-colons" and while I have to say that I am truly sorry that you have the need to be here, I am also glad that you found this group of wonderful people for knowledge, encouragement, strength, and most of all hope.

First, I'd like to say that I am a caregiver to my husband who was diagnosed July 2003 Stage IIIC and put on high doses of 5fu/leuc six weeks on, two weeks off, just like yours. While chemo affects each of us differently, my husband's (Bert) only side effects came about mid-way through his second 6 week treatment and that was severe diarrhea. It got so bad that he had to be hospitalized, but again each person is different and while some experience a variety of side effects, other's have gone through treatment without a glitch. There are several meds out there that help manage side-effects and the biggest advice I can give you is to not wait until you can't stand them anymore but act as soon as you think you might be having a side effect. They are a lot easier to nib in the but when first starting out then trying to get them under control once full blown. Our current oncologist even told my husband that I want to know if you get an ear infection...a toothache...etc. "Let me be the judge of if the chemo is causing this and what we can do about it." Those were his words.

Because Bert had such problems with diarrhea, he was able to finish his regime, but at a reduced dosage. We then switch oncologists and rather than stay in the local community, took the advice of many, many others and went to a major cancer center to an oncologist that was highly recommended to us. While Bert's overall prognosis was not too bad, the new onc firmly believed that because there was lymph node involved, he was at high risk for recurrence and thus put him on additional chemo adding oxaliplatin to the 5fu/leuc cocktail. Bert and I were both concerned about more diarrhea triggered by this new regime but we he is now receiving his 5fu treatment, usually the culprit, over a period of 46 hours via infusion, and has tolerated these additional months of chemo very, very well.

As Bud mentions, many times cancer treatment centers as well as the American Cancer Society sponsers programs whereby transporation is provided to cancer patients to and from their treatment. My mom will be participating in one as she has lung cancer and does not drive! Living in Los Angeles, not driving is almost unheard of as we travel great distances to get from point a to point b and our public transportation system absolutely sucks. So please look into one of those alternative methods.

Lastly, from reading your post, and I may be way off base here so forgive me if I am, while the doctor may not have given you the greatest news, I get the impression that you concur. Don't!!!! Being stage IIIC is still considered curable. There are also many stage IV's who have beaten the odds and please remember, statistics are just numbers...not individuals. You are a unique individual and not a statistic. Doctors do not have the "skill" to predict exactly what the outcome of a treatment will be...they base their conclusions on knowledge and general outcomes...again, just statistics. Please try to think as positively as you can and never, ever give up hope. Attitude is 1/2 of the battle against this monster and a good attitude will not only help ease your fears just a little bit, but will also add quality to your life.

There will be good days ahead and there will be some bad days ahead but know that you can come to this board as often as you feel the need and we will be there for you on both the good as well as the bad ones.

Fondly,
Monika the rambling blabber in California

spongebob

Ahoy, Bravesoul -

You have picked a great nom d'guerre - I can tell by the name "Bravesoul" that you will do OK.

First - fire your doctor. You don't need to listen to that sort of crap. Chemo is for treating cancer. It isn't for just shoving into the veins of the walking dead. You are not that. You have stage 3. It sucks. It's treatable. There are a bunch of stage four people here who have beat cancer.

Second - fire your church. A church is a group of friends who will stand by you and support you when you're down. We semi-colons will gladly become your church. Remember also that your church isn't your God. God didn't leave desert you in your time of need, the people of your church did. God has led you on a new and different path. Everything happens for a reason, Bravesoul.

Finally, I am living proof that, YES, you can do this by yourself. I did it by myself (see past posts or my personal page for my sob story) and worked a regular (military - 70 hour a week) job plus got a part-time job. You will have us here to chat with, vent to and ask questions of so you won't be alone. Talk to the people who will be doing chemo with you. They will become your new family.

Chemo affects everyone differently. Drink lots of water, use Mary Kay night time moisturizing cream on your hands and feet before the hand/foot syndrome sets in, and don't let yourself get dehydrated - if your urine gets dark, drink more water until it comes out almost clear.

And remember, your a member of the semi-colon family now!

Keeping you in my prayers

- SpongeBob

jsabol

You are a bravesoul, and I like SB's advice. You do need an oncologist who is on your side, not cancer's side. We all have to face truely unknown odds and I do believe that we can all find the strength to face our own futures. Your strength has certainly been tested so far. What a shame that your church friends have missed out on the opportunity to help.
The 5Fu and leucovorin regimen is tolerated very differently by everyone that I've heard from...from no symptoms to bad diarrhea or nausea. Don't be confused by treatments for other cancers, which can be consistently very difficult.
My own course has gone OK, I just finished treatment #2 of course #2. My main problem is fatigue right now, but I am still managing a 4 day work week and dealing with 2 teenagers in the house. I also experience constipation with very intermittant bouts of diarrhea...like every 2 weeks or so.
Have you talked with a nutritionist about getting as much as you can out of your diet? Mine has been trial and error, trying to balance nutrition needs with food likes and aversions and control for too much raw fiber.
Welcome to our club; hope we can be of help. Our thoughts are all with you. Judy

alihamilton

I am so sorry you feel so alone during this time in your life. These boards will help you because people understand and will give you support.

My husband too had a terrible time in surgery and I really thought he could not handle the chemotherapy when the doctor said he needed to start treatment as he was considered high risk.

I was pleasantly surprised though as even though the effects were there...diarrhoea and tiredness after each treatment, it was not nearly as bad as we expected and medications soon sorted out the diarrhoea.

(Do not let yourself get dehydrated...that can make you feel awful but is easily remedied.)

Now he is on a gentler treatment regime as he had more complications when he was getting chemo and radiotherapy at the same time. He is tolerating it quite well now and has gone back to work parttime. He is eating well and we are just hoping that the chemo will catch it all.

As has been said in the previous posts, everyone reacts differently but 5Fu/Leukovorin is not the worst chemo drug.

It sounds as if you have been disappointed in the lack of support you have received but, in spite of this, the more positive attitude you can adopt, the better. Have you any family or friends who could help you? Please do not let anyone tell you that treatment is a waste of time. Also any side effects you do get, do not hesitate to ask for meds to help alleviate the problem. How about getting some high calorie drinks...Ensure and such like? Try and get a little exercise but do not allow your self to get too tired.

Keep the faith...the people in your church obviously do not have any but that is not to say that God has deserted you. He will be with you, whereever you are.

lacar

Hello Bravesoul,
After reading your story, I thought I'd share a little of mine with you. I was diagnosised in Dec. 2002 with stage 4 colon CA with liver mets. I was so sick by the time they found it to where I was informed if I didn't have the colon resection followed by chemo, that I'd most likely only live another week or two. I had a colon resection, hepatic pump placement, and port-a-cath insertion all in one day. After the surgery, I was in so much pain and couldn't eat. I was very malnurished and was asking myself everyday if I had made the right decision ( to have the surgery ). My onc. wanted to start my chemo just 10 days after my surgery. I went to his office to talk to him before we started the chemo to make sure that he knew that I still wasn't eating and was in alot of pain. He assured me that the chemo would help to relieve the pain and with the help of antiemetic medications, I would get my appetite back. At the time I thought he was full of crap but, at the same time I felt, What have I got to lose. I didn't think I could possible feel any worse. I went in for weekly treatments and guess what...after a couple of treatments I did start to feel better. By Feburary I was eating everything and anything that wasn't nailed down. Just keep the fluids in ya. I add a slice of lemon or lime just for alittle flavor to my water. Try to stay away from the caffeine and sugary beverages...all they do is dehydrate ya. Your cancer center should have a social worker there to help you with transportation problems and hook you up with meals-on-wheels to assist you with meals on those days you don't feel like cooking. Best of luck to ya and stay in touch.
Lacar

andreae

Dear Bravesoul,

You are aptly named! It sounds as if you have had a terrifying time with treatment, but you certainly seem to have the right attitude. I have been undergoing treatment for 14 months. I am stage 4 rectal cancer with pulmonary mets. I have been doing chemo for 11 mths. and honestly, so far so good. I am young (21 yrs.) so I don't know if that is a factor. I have only had two "episodes" on chemo. One was because my chemo was double the dose of what I should have been doing and the last one was this past week. I had horrible abdominal pain and vomiting and was hospitalized for three days for hydration and morphine. But I'm now back in top shape and studying for an exam! I have all my hair, I take four University classes, I go out with my friends, I go to and from treatment and hospital by myself, ect. Chemo is truly an individual thing, so there is a possibility that you may suffer no side effects. Also, find some support. Talk to social workers at your hospital, get in touch with the American Cancer Society (they can probably arrange transportation for you), ect. You do not have to face this alone.

There are great people on this board, so whenever you feel like posting, I suggest you go for it. We are behind you. I'll keep you in my thoughts and prayers.

Lots of love and positive thoughts,
Andrea

KrisS

I can't add lots to the excellent advice others have already given, but I too wanted to share my story to let you know that things may not necessarily be as bad as you have been led to believe. Since diagnosed 5/02 I have been on chemotherapy for Stage 4 disease- mets to liver and lymph nodes in my chest and along my spine. I have been on three courses of chemo 14 of the 20 months since I was diagnosed.

I did lose lots of weight while I was on chemotherapy along with radiation (due to a radiation induced stricture in my intestine). I had to go on TPN (total parenteral nutrition) a coiuple of times but am feeling well now.

Although I drive to all my own treatments, it sounds like it might make it easier with your neuopathy and the need to take public transportation, to have someone who could take you. I would suggest checking with social workers at the oncologists office, the hospital or your regular doctor about getting some help in this regard, as well as for information about some assistance at home. Even if you don't need it now it may set your mind at ease to know where to get help if you do need it.

I hired a cleaning lady which was a nice luxury.

Nutrition is important, and I also suggest that you talk with a nutritionist for suggestions.

Best wishes,

Kris

bryancarson

It's true chemo sucks. But not as bad as dying from cancer. I too was alone and went to every treatment by myself. I made lots of friends while hooked up to the chemo bag.

I'm truly sorry your church has left you out. I am a pastor myself and appologize to you on their behalf. Please, like SB said, don't hold it against your God. He loves you and wants to walk you through this trial. You will do great. Be positive and keep fighting!

2bhealed

Hello Bravesoul,

I am a bit late into the discussion but wanted to share my thoughts with you.

I am Stage 3 lymph pos colon cancer and have been cancer free for 2 1/2 years. It has not spread to our knowledge. The protocol that was recommended was 5 FU/leucovorin. I declined. No chemo. None. Zip. Notta. Nothing. I am still alive and healthy.

If your doctor doesn't believe the chemo will be of use then why put your malnourished body through it? And not doing chemo does not equate not doing anything. I have done treatments just not Western Medicine treatments. Have you looked into Alternative and Complementary Medicine? Or in other words Integrative Medicine. There are proven successful approaches to healing cancer that are not chemos.

If your spirit is questioning the chemo approach then listen...your body may be trying to tell you something. Chemo is not for everyone. It IS your choice...not the doctor's or your family's but YOURS!

www.cancerdecisions.com

IF you fear the chemo then your body may be fighting against itself. The mind is a powerful source.

I would happy to share any info on alternative approaches...there is plenty out there and I have tried a few. My oncologist is amazed and makes him think especially since he was diagnosed himself with colon cancer a year ago. He did not want to do chemo either and didn't have to as he was only Stage 2. That speaks loudly to me that even an oncologist did not want to do chemo. But luckily he was spared the decision. He says I cause him stress! haha! :-) Of course! I make him think!

So yes, I am the only voice here telling you to maybe look at this differently but it may be worth looking into.

I am here to help.

peace, emily