And another newbie recently diagnosed

toddi1973
toddi1973 Member Posts: 41 Member
in Colorectal Cancer #1
Happy Halloween y'all !

Didn't expect to have to worry about Cancer in my thirties but apparently plans for me were different. I was taken to the ER on 9/1 and was diag'ed with diverticolits. Unfortunately the drainage of the abscess did not yield the expected results and the surgeon went 'digging' to find the source of the blockage and removed 20 centimeters of my colon with a 9 cm polyp in it.

As nobody thought of cancer at that time, the surgeon was stingy in removing Lymph nodes and only got a limited amount.

Samples were sent to biopsy and came back as "well differentiated adenocarcinoma (4.5 cm) in the polyp". The lymphnodes came back negativ.

At that point I was shocked but also relieved about the non-affected lymphnodes.
However, 3 weeks later a CT scan showed 2 lesions on the Liver, so an MRI was ordered.
Time between CT results and MRI was two weeks and an insane rollercoaster that I am sure I will have more of.
MRI results came back as 'cysts' and not Mets which made my oncologist stage me as Stage 2.

Per the oncologist nothing else shows up on CT or MRI and she's confident that we might have caught it timely. However, she still wants me to go through a full round of Chemo.

So today was my first round of FOLFOX (12 in total be-weekly) and I am at home with the pump now, trying to understand what is happening. Have already noticed why I was warned of cold soda and will try to find out how long that effect lasts for me between treatments.

I don't just want to write my story here but I have a couple of questions for the more seasoned fighters in this great forum (I have been lurking for the last 6 weeks but hadn't reg'ed yet).

- I am most worried about the Neuropathy as I need my hands/fingers for my job (Computergeek).
- I read that Glutamine actually can help avoid that neuropathy. Is that something any of you have noticed ?
- I am taking low dose aspirin, Milkthistle and Vitamin supplements (co-Q10, Vitamin C, Vitamin D and Vitamin B complex) and have done so since quite some time. Should I keep taking them or is this a bad idea. As per my oncologist I can continue but I'd like a second opinion here.
- I try to have a fruit smoothie (about 1 quart) (Banana, Kiwi, Blueberry, Apples, Strawberry and Whey protein) daily as 'antidote' to my bad conscience for not necessarily being the most healthy eater. Is that a good idea or pointless ?

I hope I didn't bore anybody with my story and hope you all have a great halloween !

Todd

Comments

  • lesvanb
    lesvanb Member Posts: 905
    #2
    Welcome Todd
    So sorry you've had this diagnosis, and also glad you found your way here.

    Here is a good place to start with supplements and herbs and cancer
    Memorial Sloan Kettering site on herbs, supplements and cancer etc
    http://www.mskcc.org/mskcc/html/11570.cfm

    There is a reference to glutamine helping with oxiplatin induced neuropathy (scroll down to the literary summary and critique).

    My naturopath who worked with naturopaths in cancer clinic setting helped with vitamins and supplements during chemo. For example Oral Vitamin C is controversial while on chemo, as is Vitamin B-12. Vitamin B-6 helps with neuropathy.

    Vitamin D3 is the D vitamin of choice for colorectal cancer (and cancer in general). You might ask your doc for a Vit D3 levels test to see what your baseline is.

    I also took aspirin during chemo (325mg) but beware it is contraindicated with 5FU. I had no problems and my doc monitored it.

    Whey protein is helpful during chemo (helps prevent chemo induced cachexia).

    I take and have taken milk thistle daily.

    You might consider juicing vegetables as well as drinking the fruit smoothies. Gives less of a spike in blood glucose levels. My doc though said that eating, even if it's junk food, should be a first priority on chemo. Be aware that some folks gain weight on chemo (I was one of them). Being overweight is a risk factor for recurrence and I'll tell you it's a long hard, struggle to lose, especially after treatments.

    Additionally be aware that adjuvant chemo for stage 2 CRC is controversial and there are national guidelines for its use.
    http://www.cancer.gov/cancertopics/pdq/treatment/colon/HealthProfessional/page7

    Your cancer is well-differentiated which has a better prognosis than poorly differentiated so check around about whether you need adjuvant chemo at all. There is also genetic tumor testing that can also help with this decision.

    all the best, Leslie
  • toddi1973
    toddi1973 Member Posts: 41 Member
    #3
    lesvanb said:

    Welcome Todd
    So sorry you've had this diagnosis, and also glad you found your way here.

    Here is a good place to start with supplements and herbs and cancer
    Memorial Sloan Kettering site on herbs, supplements and cancer etc
    http://www.mskcc.org/mskcc/html/11570.cfm

    There is a reference to glutamine helping with oxiplatin induced neuropathy (scroll down to the literary summary and critique).

    My naturopath who worked with naturopaths in cancer clinic setting helped with vitamins and supplements during chemo. For example Oral Vitamin C is controversial while on chemo, as is Vitamin B-12. Vitamin B-6 helps with neuropathy.

    Vitamin D3 is the D vitamin of choice for colorectal cancer (and cancer in general). You might ask your doc for a Vit D3 levels test to see what your baseline is.

    I also took aspirin during chemo (325mg) but beware it is contraindicated with 5FU. I had no problems and my doc monitored it.

    Whey protein is helpful during chemo (helps prevent chemo induced cachexia).

    I take and have taken milk thistle daily.

    You might consider juicing vegetables as well as drinking the fruit smoothies. Gives less of a spike in blood glucose levels. My doc though said that eating, even if it's junk food, should be a first priority on chemo. Be aware that some folks gain weight on chemo (I was one of them). Being overweight is a risk factor for recurrence and I'll tell you it's a long hard, struggle to lose, especially after treatments.

    Additionally be aware that adjuvant chemo for stage 2 CRC is controversial and there are national guidelines for its use.
    http://www.cancer.gov/cancertopics/pdq/treatment/colon/HealthProfessional/page7

    Your cancer is well-differentiated which has a better prognosis than poorly differentiated so check around about whether you need adjuvant chemo at all. There is also genetic tumor testing that can also help with this decision.

    all the best, Leslie

    Thank you for the warm welcome
    And thank you for a big load of resources to learn/study and be confused. :-)

    I forgot to mention that my oncologist had the genetic marker test done and it came back with a reoccurence probability of 25%.

    Also the argument that I heard from multiple health professionals in this rollercoaster is that at this point 'microclusters' or malignant cell groups that might have spread can't be seen on CT or MRI and therefore this chemo is given as a 'prophylactic' therapy.

    I was given the choice to do it or not but was elected to do it. I don't want to look back in 5 years and think "If only I had tried everything that I could back then". That's my story, that's what I am sticking to :-)


    Todd
  • wolfen
    wolfen Member Posts: 1,324 Member
    #4
    toddi1973 said:

    Thank you for the warm welcome
    And thank you for a big load of resources to learn/study and be confused. :-)

    I forgot to mention that my oncologist had the genetic marker test done and it came back with a reoccurence probability of 25%.

    Also the argument that I heard from multiple health professionals in this rollercoaster is that at this point 'microclusters' or malignant cell groups that might have spread can't be seen on CT or MRI and therefore this chemo is given as a 'prophylactic' therapy.

    I was given the choice to do it or not but was elected to do it. I don't want to look back in 5 years and think "If only I had tried everything that I could back then". That's my story, that's what I am sticking to :-)


    Todd

    Hello Todd
    Extending a warm welcome to you also. You have found a wonderful and caring group of people here who, I'm sure, will chime in with their many experiences and helpful hints. Never be afraid to ask a question, because someone probably has an answer.

    I am not a cancer patient, but my precious daughter, Johnnybegood is. We both have gained a lot of valuable information here, as well as many new friends. Another suggestion for the neuropathy is Alpha Lipoic Acid. It has helped some people here. I purchased it at WalMart after hearing about it here. My husband takes it for severe diabetic neuropathy and it helps him greatly. Many others here take various supplements and I'm sure they will be glad to share the info with you.

    Take Care,

    Wolfen
  • pete43lost_at_sea
    pete43lost_at_sea Member Posts: 3,900 Member
    #5
    welcome to the board and sorry your got crc but you found us
    so your onc's approved a pretty good choice of initial supplements.
    you are lucky, many conservative oncs would be scaring the crap out of you with thaat list.

    its very similar to my supplement list while on chemo.

    i am not recommeding anything and getting a really excellent naturopath helped me.
    so i also had gut relief powder, probiotics and digestive enzymes and a simple diet mainly plant based with minimum protien and i juiced everyday.

    i also did chinese herbal medicine and made all 12 rounds folfox post my surgery for a large t4 stage 3 tumour with3 positive nodes.

    read anticancer it will point you in some other directions like meditation and diet.

    you remind me of me back about a year ago when i was just starting my chemo.

    my neuropathy has almost healed and i am 6 months post chemo.

    remember baby steps and take it easy and a good nights sleep to melatonin up is more important than staying up late researching.

    juicing as lesanvb suggested is awesome, you want a super healthy liver, its about to be hammered.

    the weight gain was an issue for me as well during chemo.

    goodnight and goodnight from sydney australia.

    welcome again.

    hugs,
    pete
  • tanstaafl
    tanstaafl Member Posts: 1,313 Member
    #6
    chemo + supplements
    To add to what lesvanb said I would consider replacing even more fruit with veggies and fruit extract powders to dodge the fructose content.

    One of the most important things I did for my wife (stage II at least; no, st III; hang on st IV...) was to get her blood tested for CA19-9 and onto cimetidine when CA19-9 was higher than normal - some others may say just do it since there's no clear standard but cimetidine for CA19-9 can make a big survival difference near surgery if CA19-9 (+ CSLEX1 in Japan) is above average to high. Might want to review various Cancer and Colorectal articles at LEF.org on supplelments.

    We use lots of DHA/EPA content from fish oil, PSK-clone, vitamin D3 with a fluoruracil-leucovorin treatment as well as even more than LEF it many cases (sometimes less too).
  • tommycat
    tommycat Member Posts: 790 Member
    #7
    To help with the pain of
    To help with the pain of neuropathy, I kept some mittens by the refrigerator and would use them w/e I went into the frig or freezer...or come to think of it, whenever I handled anything cold, period. I also would sleep with mittens/gloves.
    Your Friend in California~
  • tommycat
    tommycat Member Posts: 790 Member
    #8
    toddi1973 said:

    Thank you for the warm welcome
    And thank you for a big load of resources to learn/study and be confused. :-)

    I forgot to mention that my oncologist had the genetic marker test done and it came back with a reoccurence probability of 25%.

    Also the argument that I heard from multiple health professionals in this rollercoaster is that at this point 'microclusters' or malignant cell groups that might have spread can't be seen on CT or MRI and therefore this chemo is given as a 'prophylactic' therapy.

    I was given the choice to do it or not but was elected to do it. I don't want to look back in 5 years and think "If only I had tried everything that I could back then". That's my story, that's what I am sticking to :-)


    Todd

    PS:
    "I was given the choice to do it or not but was elected to do it. I don't want to look back in 5 years and think "If only I had tried everything that I could back then". That's my story, that's what I am sticking to :-)"

    That is also how I felt and so far so good. There is a price to be paid for the heavy load of chemo (and radiation), but I didn't want any regrets if the cancer came back even meaner and nastier, and I hadn't done everything possible to stave it off, or knock it away forever.
  • Annabelle41415
    Annabelle41415 Member Posts: 6,742 Member
    #9
    Welcome
    Welcome to the club that no one wants to join. However, you have found a great group of people here to help you get through this rollercoaster and fears. The Oxy is what is making anything cold for you unbearable. At first it won't be too bad but the more you are on it the more it stays longer and longer in your system. Also with any supplements and pills ask your oncologist as some can diminish the effectiveness of the chemo. Good luck and post often to let us know how you are doing.

    Kim
  • lesvanb
    lesvanb Member Posts: 905
    #10
    toddi1973 said:

    Thank you for the warm welcome
    And thank you for a big load of resources to learn/study and be confused. :-)

    I forgot to mention that my oncologist had the genetic marker test done and it came back with a reoccurence probability of 25%.

    Also the argument that I heard from multiple health professionals in this rollercoaster is that at this point 'microclusters' or malignant cell groups that might have spread can't be seen on CT or MRI and therefore this chemo is given as a 'prophylactic' therapy.

    I was given the choice to do it or not but was elected to do it. I don't want to look back in 5 years and think "If only I had tried everything that I could back then". That's my story, that's what I am sticking to :-)


    Todd

    Sounds good Todd
    it's important to be fully invested in our cancer treatments if for nothing else than peace of mind :-)

    Other tips for FOLFOX and avoiding neuropathy:
    1) My infusions included calcium/magnesium before the FOLFOX
    2) They also were given over 8 hours and I could tell the difference if they were sped up.

    My neuropathy was never more than Grade 1 in my feet only, not hands. Now 2.5 years later some residual tingling and walking-in-sand feeling but no interference with balance etc.

    all the best, Leslie
  • CherylHutch
    CherylHutch Member Posts: 1,375
    #11
    Welcome aboard, Todd!
    It's too bad you had to find this board, but now that you are here, it's a good place to hang out in. You will have a ton of questions as you go through this journey... and you'll find folk here are all at different stages of the journey, so lots have already gone through the treatments you are about to start, and others have moved on to different treatments. Some will be able to answer your questions in plain, simple English and others will use so many abbreviations and Cancer-related jargon you will think they are speaking a different language. Don't worry, you aren't the only one confused... even those of us who have been around on this journey for some time will read some of these posts and say, "Whaaaaaat??" :) So if you are feeling lost and confused when reading through posts, don't worry, you aren't the only one ;)

    In the meantime, don't be afraid to say, "I didn't understand that post at all...could someone translate into simple English?" When you have been battling the beast for some time, you will find that folk use abbreviations that mean nothing to the average person, but are common jargon terms to those fighting the beast or their caregivers.

    Now, with the chemo you are on... most people don't have too many, if any, problems with the 5FU. It's the Oxy that is added to that combo. A very strong chemo that has been known to be very effective... unfortunately, it is the chemo that can cause the neuropathy. Now, for the most part, after you have finished your treatments and get off the Oxy, the neuropathy will go away. For most people. But there is a small percentage of us where the neuropathy does not leave :( I was hit pretty hard with it in both feet and shins. I only managed 9 treatments and then my oncologist had to take me off the Oxy and finish the last 3 treatments on just the 5FU. I was looking forward to the neuropathy going away, but alas, it stayed and yes, it affects my balance, hence makes walking any distance quite the challenge. But this is not normal, so don't go fretting that this might happen to you. Chances are it won't. I never did get the neuropathy in my hands or fingers, other than the severe sensitivity to cold. But that would go away a few days after each treatment was given... and then, when the Oxy was stopped completely then there was no more sensitivity to the cold. So, as a computer geek, I'm sure having complete use of your hands/fingers is one of the main things you are worried about and I say don't worry... they will probably be just fine :)

    As for vitamins/supplements, the main problem is that some of them can interfere with the effectiveness of the chemo and you don't really want to play with that, otherwise you may as well not be on chemo. No point putting your body through the toxins of chemo if it isn't going to be working FOR you :) Of course, having said that, a lot of vitamins/supplements have cause no harm with the chemo and don't affect the effectiveness of chemo. But that is why it is important to tell your oncologist what vitamins/supplements you are on or ones that you want to try for whatever reasons and they can tell you if any of them would be a problem for the treatment you are on.

    Hope some of this helps and chances are, all these posts will just make you think of new questions to ask... so ask away :D

    Cheryl from Vancouver

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