new board member

[tmberwoof]

Hello all and thanks for this BB,
I have been diagnosed with colon cancer May 18 and bowel resection done on May 19 with several spots on my liver that my surgeon looked at but didnt see. I was sent to an oncologist to discuss any chemo therapy. There was none recommended for the colon cancer. The several spots on my liver threw an alarm and she sent in for an MRI. Came back with spots so i was sent in for a biopsy. Went for the follow up on the biopsy and it turned out to be colon cancer on the liver. Oncologist told my bluntly ( as if i went in to have a finger diagnosed with a splinter) that chemo was needed and best i could hope for was remission. "You have cancer". I am not too excited about the thought of chemo Folfox5 nor am i excited about the Port that goes into before i start chemo. I live in Arizona and am on AHCCCS. Arizona Health Care. My choices of a second opinion are scarce. But dont like the way my oncologist has treated me and they she is handling this. My visit with her was interrupted my another patient that was going thru treatment and there was a few more interruptions , then it was "i have other patients needing attended to so you can call me on Monday with further questions"( this appointment was on a Friday). Now I have more questions than answers.

Is the cure worse than the disease? What would be my chances of life without chemo vs struggling with chemo. i asked my oncologist how long had any of her patients lived from the chemo treatment, her answer was 13.5 years and he was a hard core chain smoker. I also asked her the shortest anyone lived, her reply was 2 years but i was around 90 with many other medical problems. I am an otherwise very healthy 55 y.o. male.

Like I said, I live in Arizona and its a small community that doesnt support many doctors and my oncologist is 30 miles away. Phoenix is about 90 miles south of me, so my commute would not be an easy one.
Sorry if this post is jumbled up from one subject to the next
I do have other questions but cant concentrate now to think of any more, and like I said, I havent even started chemo yet, so i cant blame "chemo-brain".

This all seems to "rushed" or "hurried" to get this done and started. i havent even seen any kind of pictures or been explained to as what is going on inside my own body. Sometimes i am thinking that these Doctors and needing another payment on their resort home. Oncologist said i was eligible for SSDI. I have not worked in almost 2 years for medical problems. Firstly i was a truck driver and my right bicep was tearing away from the tendon. I had surgery to repair that last September. Was recovering from that and the bowel was acting up and was diagnosed with colon cancer and the bowel resection was done with a week stay in the hospital for recovery. was doing good a few weeks ago and now my left side is acting up with what feels like pressure pushing on it just below the ribs. I dont "feel" like doing anything most days. and this is driving my wife crazy. as there is bills to be paid and i am not contributing.

anyway enough of my ranting about this as i am tired and it is getting late. Thank you for listening and for the BB.

also sorry for the grammatical errors.

tmberwoof.

stage 4 colon cancer moved to the liver.

[stu]

Hi ,
Welcome to the board. I will leave others to discuss with you the best way to handle the oncologist as I am not from your area . However initially we felt as though the oncologist steam rolled over my mum with his approach . It seemed without compassion or advocacy on her behalf . With time that changed but it is a very unsettling experience when your relying on them .
One point I would like to encourage you with is the thought of treatment. The first year my mum had treatment she had a hard time . The second year her dose was adjusted, the treatment worked the same as the first year but her quality of life was greatly enhanced. Hindsight is wonderful but we should have spoken up the first year . It has however been totally worth it. Eight years of great living with bumps on the way and she is now 75. You are much better placed than her in terms of your age but you will see from my signature that she has had her share but still loves life. This year I see a little difference but I think in my mind she does so well she is not allowed to have age related changes!!!
I wish you all the very best as you get your treatment plan in place,
Kind regards,
Stu

[Volfan]

I can't speak to the Doc situation as I was very fortunate with the one I have.
I started Folfox the first of April and added avastin about mid May and I will be getting my 9th treatment in the morning. For me the first month was the hardest. By this I mean I was tired a lot and still trying to figure out how to manage stomach issues and what days I would have them. By weeks 4-6 I started to get my energy back and my off week of chemo I felt like my old self. At 8 weeks I'm back at work. Chemo has just become something I do every two weeks. I now have a pretty good idea of when I'm going to have off days on the way I feel so we just schedule around them. And my off feeling days aren't the end of the world for me I just get tired or realize I need to hang close to a bathroom.
You will read a few times that you will develop a new normal with your treatments. My wife and I still go out and do everyday stuff. We even take trips to visit the in laws (chemo didn't stop that even ).

[Tdubz]

I believe this process seems to go fast for everyone. I had a colonscopy on 3/15, surgery on 4/1, and started chemo 5/8. With that said, if you don't like your onc, definitely look around. You will be visiting this office twice a week on chemo weeks (chemo day and disconnect day) and once a week on off weeks(for labs) for possibly 6 months. That is a lot of doctors visits so you better like and trust the person you are seeing.

The folfox sucks but it's manageable. My main side effects are feeling tired/weak and a slight bit of nausea for a few days and maybe a day or so of diahrea. There's also the cold sensitivity and the neuropathy as well but those don't make me feel bad, they just suck to have lol. Of course everyone's experience is different. Many have it much worse and many have it a lot easier.

Port surgery in my opinion was nothing to worry about. Mine didn't even hurt. I had to sleep on my back for about 2 weeks since it was a bit uncomfortable to sleep on my side in th beginning but now I don't even notice it.

[mypinkheaven]

Oncologist said i was eligible for SSDI. I have not worked in almost 2 years for medical problems. Was recovering from that and the bowel was acting up and was diagnosed with colon cancer and the bowel resection was done with a week stay in the hospital for recovery.

Social Security rushes Stage 4 cancer applications. People on SSDI are eligible for Medicare 2 years after their diagnosis. Medicare would open your access to different oncologists.

Good luck

[betsydoglover]

You ask if the cure is worse than the disease. Not at all! And if it saves your life, even more not at all. See my signature - 12+ years now from diagnosis and have been doing fine for years - with cancer anything can happen, but not even starting treatment is, in my opinion, a mistake. Remember, you can always stop chemo if it is too much for you, but you'll never know how you will feel or how it will work until you try it.

Take care,

[NHMike]

I felt that my local team moved too slowly. This is cancer and it can spread so I would have preferred if I got to treatment sooner. Diagnosis to treatment was five weeks which seems fairly standard as I did get second opinions in Boston but it would have been nicer to get started earlier. I have read where some of the folks on this board started treatment at two weeks from diagnosis.

[tmberwoof]

Hey all,

Thanks for the hasty replies and bits of encouragement. I am a former cross country truck driver until my bicep repair, then my cancer dx. Am thinking of job wise at least part time as to not go over SSI limits. Not certain to go about retraining for a new job at 54 ( yes i said 55 in my original post but was tired and wasnt thinking correctly), nor what type of employment would be suited to my situation, I am not a clerical type nor a face to face retail type (not good with customer service continuously) possibly a night stocker at a local grocer or retailer or possibly a tire and brake installer( tires and brakes i have good experience at and would prefer this type of work). but not certain how my chemo would affect my overall state of mind and body to even consider such an attempt. I read some of you are still not back to or continuing work, while others are back to work 2 weeks after first treatment.

Anyway thank you for the fast replies and bits of wisdom and encouragement.

Tmberwoof

[NHMike]

I asked the Oncology nurse about working and she told me that the vast majority of her patients work through their chemo and radiation treatments. That said, everyone is different in how they respond to treatments. There may be gastrointestinal response that give you constipation and diarrhea, in some cases, alternating, so you might want to be near a bathroom at times if you run into the latter problem.

The suggestions in the training session that I had were to avoid infections. That translates to avoiding people, washing your hands a lot, and really avoiding sick people. That was hard for me for a few weeks as my son got the flu and then a lung infection, and then my wife caught the flu, while I was in the diagnostic stage. So I had to avoid them both as best as I was able to. Another recommendation was to use an electric razor instead of one with blades for the potential to get cut as there might be a higher risk of infection from a cut. I did shave with a blade recently but I didn't shave closely. So I'm generally sporting a lot of facial hair through the treatments.

I think that you really don't figure it out until you start it and then you can determine what you can and can't do. I think that the side-effects become stronger as you go through the 28 days but you do get breaks on the weekends. I have felt some tiredness and some gastrointestinal problems and am trying to cope as best as I can.

I didn't stop working but I am working from home for the six weeks. I may come into the office early in the morning or late at night to do some things but I'm doing most of my work from my home office. I have a coworker with a different kind of cancer and his was far more debilitating. He took short-term disability which turned into long-term disability. What happens with long-term disability where we are is that you lose your health insurance and you get only 50% or 66% of your pay depending on what you picked for disability coverage and it can be pre-tax or post-tax. So he had to sign up for COBRA to continue his health insurance coverage but he had to pay for it out of his long-term disability income. I have about 3 1/2 weeks of vacation time accrued, along with 1 or 2 weeks of sick time available to use for the surgery and recovery time. I am hoping that surgery and recovery only keep me out of work for a week or two - but I don't know whether or not that is realistic. Complete healing takes about four weeks I think. I want to keep short-term disability in reserve if I really need it and really want to avoid long-term disability. I also really need to work in a vacation as this thing has been tough on my family.

So I definitely think that it's good to be thinking about the financial stuff. I don't see that much on finances discussed here and I'm curious as to how people fare a year, two years or longer after going through cancer.

My course of treatment is:

- Radiation treatment Monday - Friday. This is typically a 15-minute appointment. I need to drink about 24 ounces of water and hold it one hour before the appointment. Sometimes they get backed up if a patient needs a lot of time so it may be more than 15-minutes (worst case was an hour). This affected my ability to work as I didn't bring my laptop into the radiology place. All of my remaining appointments start when they open so I shouldn't have this problem again.
- Xeloda (oral), twice a day. I'm supposed to eat a meal 15-30 minutes before taking it to avoid nausea.

These items may not seem like much but you have to schedule the rest of your day around them and they do intrude somewhat.

I'd suggest reading other threads so you can get an idea of what the main treatment parts entail.

[DarknessEmbraced]

Welcome and I'm sorry you're going through this!*hugs*

[tmberwoof]

new update, got a second opinion on the 29 of Aug. This was done at U of AZ oncology center in phoenix. This
oncologist and very kind and patient. and explained things thoroughly without interruptions. He also explained to me that this cancer and my body, that blood work wont show the "markers" for the cancer, that only pictures will tell the story. he also told me that with the treatment i will be receiving Folfax with avastan that 50% of the people on this live under 2.5 years and that 50% live beyond 2.5 years. this is a hard pill to swallow (pardon any pun). but i am still going to start treatment and stay with this doc for the duration of my treatment.

there is more to all of this but can only remember bits here and pieces there.

As a side note i was informed that eating pickles while on chemo will help with my taste buds. anyone ever hear of that or have any thoughts or ideas if that will work or not.
i like pickles and dont mind eating them especially if they will help me in that aspect.

I live 90 miles north of phoenix and am looking to move to there. if anyone has any ideas where to find a very cheap apt please let me know. the drive down there and back every 2 weeks will kill my finances. also looking for support groups if any.

Thank you for this forum.

tmberwoof

stage 4 colon cancer living in my liver.

[JJH]

...As a side note i was informed that eating pickles while on chemo will help with my taste buds. anyone ever hear of that or have any thoughts or ideas if that will work or not...

I ate dill pickles when I was on chemo. I don't know if it did any good, but at least I liked the taste. I also ate dried ginger and ginger snaps.
http://www.wideopencountry.com/pickle-juice-health-benefits/

[LeonW]

. . . eating pickles while on chemo will help with my taste buds. anyone ever hear of that or have any thoughts or ideas if that will work

My experience: try anything that you can think of. I've had pleasure from pickles; avocado/bacon sandwiches; ham/cheese toast; tonic water/coca cola (cuts through the slime); salted herring; BurgerKing whoppers (20 miles/30 kms one-way trip); tomato juice+pepper+pepper/worcester sauce; beef tartar+onions; chewing gum; fresh strawberries; savory omelette; toasted bread; etc. It sometimes worked, but if anything, it kept the thought alive that food/drinks *can* be enjoyed. But if it works, no guarantee that it will be a pleasure the next time. Keep experimenting. Just try to enjoy.