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Diagnosed with colon tumor one month ago - what to expect next

Shifra
Posts: 1
Joined: Nov 2016

Hi everyone,

I'm new to this list - never thought I would be joining it. I'm 51 and the mother of two active boys, aged 8 and 4.5. Just learning now how thankful I should be for having been healthy all my life.

One month ago, I went for a routine colonoscopy and was diagnosed with Stage IIIC sigmoid cancer. Two weeks later, I had successful laproscopic resection with an amazing surgeon and am now up and about again. The strange thing, feeling no pain, is that sometimes I forget that all of this has happened in the last month. As if it were a bad dream or something.

I begin 12 rounds of chemo - FOL-5 and oxaliplatin - in two weeks to kill off any cells that may have escaped. I don't know what is worse: doing the chemo or waiting to start it. From what I am reading on these threads, I think it may be a little of both. My doctors are very optimistic about my prognosis given my age and health, but I have learned quickly that cancer is a journey into the unknown. Trying to make the best of every moment with my husband and kids - and hoping that by May I'll be on the way to NED. My friends who are survivors are all great advocates of thinking positive.

I'd be grateful for any general advice I should keep in mind as I start this next stage of my journey. I have arranged my chemo schedule so that I can keep working during the treatment.

Thanks!

 

NewHere's picture
NewHere
Posts: 1197
Joined: Feb 2015

Sorry you are here, but it is a great place.  

First get a port if you do not have one, makes the chemo and blood draws easier.  I am guessing you probably will, seems most do, but just in case.  Also get the lidocaine cream for it to make the needle insertion a bit easier, though I have forgotten it from time-to-time and it was not too bad even without the cream.

I was diagnosed stage IIIC, with spots elsewhere that were too small to tell for sure (one did in fact turn out to be a met in the lung which was taken out 6 weeks ago).  I am in generally good health otherwise and the docs are all saying that they will take care of whatever comes up.  

I did 12 FOLFOX (the ox is the oxaliplatin) treatments over 6 months.  The oncologist wanted to get at least 8 treatments with the ox in there, and no more than 10, keeping an eye on the peripheral neuropathy.  Did the first without the OX to see how the other part of the cocktail would work (i.e., bad reaction).  I had to stop with the ox after 8 treatments (my 9th session) due to peripheral neuropathy starting to build and it was explianed it was more snowball rather than linear.  The chance of severe/permanent neuropathy was a bigger risk in the oncs opinion compared to the incremental benefit of further treatments.

I had every reaction during treatment, but really not severe or long term.  For instance, two days of hiccups then no more.  A bit of stomach distress, then gone after a day or two.  I got lucky.  The two were "real" were cold sensitivty and neuropathy.  (Did lose hair and also my hair went gray quickly).  As to the cold, it was usually the week I was infused then gradually going down the second week.  But be prepared, gloves to go in the fridge, room temperature or warmer food and drink, etc.  I even had to sleep sometimes with a scarf and often wore socks and gloves to bed.  I usually walk around in sandals in the winter and my treatment was during the summer.  Then the peripheral neuropathy.  It has resolved for the most part in my hands (15 months after end of chemo) though the feet are still feeling it.  Does not affect my, I can run etc., just feels funny unless I have socks on.  I did not even get that nauseous during this all, a little bit of loss appetitte during week of infusion and pump, so leaned on ginger snaps.  But really did not even pop the pills for anti-nausea at all.  Never threw up once.

I did get very tired about 7 treatments in.  Before that, would rest when I would come home from infusion, but would often even go out that evening.  After 7 treatments about a day or so after disconnect I would get tired.  I would get hooked up on Monday, disconnected Weds and by Friday started getting real tired and would sleep almost non-stop until late Sunday.  Something like 40 out of 48 hours.  

My blood work was always good, so went to a ton of minor league baseball games.  Walked around the park for exercise and just being out and about was good physcially and mentally.  Sometimes a bit tired, but would take an hour or two nap before games if I was a bit more tired.  Trying to do anything that is normal, such as grabbing a cup of coffee at the diner for 15 minutes, would help.  And sometimes allowing myself just to "be a slug" and binge some tv or movies worked.  Kind of entitled to spoil yourself a bit.

There are going to be times were you may feel a little down, but that is part of this.  It is normal.  Try not to let it get to you or too bogged down when it happens.  Find something fun to do and come here to vent as needed.  Or laugh.  Or discuss.  It has helped me through this.

Again, sorry that you are here, but before you know it chemo will be in the rear view mirror.  I placed all my sessions on my calender then all of a sudden it was done.  (Also I moved a couple of sesssions a day or two in either direction if I was going away for a long weekend, etc.  So keep that in mind.  There is some flexibility in there.)

John23's picture
John23
Posts: 2140
Joined: Jan 2007

Second opinions should be mandatory. And they should always be gained from a colorectal surgeon that is NOT of the same group or organization.

You need to know the real statistics of "clean-up chemo". You can learn about anything medical by reading at the various Journals of Medicine.

The Journal of American Medicine is a good start, and there are many Journals dedicated to the Oncologists that can be quite revealing.

There are many ways to fight cancer, chemo and radiation are not the only way, nor is it the best. There is a 2% advantage of the so-called "clean-up chemo", but that advantage is usually set back by neurological problems (often permanent), and second, unrelated cancer caused by the toxic chemicals.

A second opinion (and a third) can often enlighten you to the facts and possibilities.

It took your cancer time to grow, so why rush into anything? Chemo was designed to knock down tumors, not seek and destroy individual cancer cells. It poisons all cells with the hopes that the patient's good cells will bounce back leaving cancer cells behind. Nice theory.

Cancer can (and usually) recurs over time regardless of mode of therapy; there are no guarantees ever offered with any modality or therapy, so take time to think things through and get other qualified opinions before you begin this journey.

Click on the various names here and read their biography and history....... And enter some data on your own profile page, it makes it easier for responders to know something about your condition without you having to repeatedly explain....

My best hopes for you

John

JanJan63's picture
JanJan63
Posts: 2482
Joined: Sep 2014

Welcoome and sorry you're here. As John mentioned, I wasn't thrilled with the idea of the mop up chemo. I did some research and was going to turn it down but chose to do it when my oncologist said I should. I was scared that if I didn't and it spread or returned I'd be kicking myself. My situation is rare but the mop up chemo caused a blood clot in my lung that almost killed me so I wish I'd never done it. Howevere, now that I have probably mets in my lung if I hadn't done it I'd be upset with myself thinking that if I'd done the chemo afterwards I wouldn't be dealing with them now. I'd never have known that it would do what it did.

My oncologist said the mop up chemo reduces the chance of recurrence by over 40% but if it isn't done within (I think it was) 60 days of the surgery the percentage drops to about 25%. I had mine at something like 90 days after surgery due to some complications I had. That was the main reason I was seriously considering not doing it at all.

I'm not trying to sway your decision in any way, I'm just giving you my story which is an unusual one.

Jan  

NewHere's picture
NewHere
Posts: 1197
Joined: Feb 2015

In my third long winded post goes to the timing of the chemo.  And it is from Canada.  :)  

It is not gun to head, need to decide now (for the OP) type decision so you have time to decide.  

NewHere's picture
NewHere
Posts: 1197
Joined: Feb 2015

here is a 2% advantage of the so-called "clean-up chemo", but that advantage is usually set back by neurological problems (often permanent), and second, unrelated cancer caused by the toxic chemicals.

On the math, everything seems to indicate more from what I read and have been told. Nothing tremendously wonderful, but...

For instance, if surgery alone has a 50% chance of recurrance and chemo knocks it down to a 40% chance of recurrance, that is a 20% reduction.  2% would be 48% chance of recurrance, no?  If the assumption it is  "can and usually" coming back, which for CRC seems to be something that happens, it is a question of looking at the results and percent over a set period of time

Some of the things I was told add a percentage point here and there, such as daily aspirin.  And my ocnologist was strong in feeling that it is not worth pushing the ox part of the cocktail past a certain point due to the benefits being outweighed by the negatives.  

It was estimated that in my condition (before the confirmation that the thing in my lung was a met the whole time), that with chemo the recurrance rate would be 25% - 30% as compared to 50-60% range.  And to be clear a 25% - 30% chance of reoccurance does not give me the warm fuzzies at all.  And I can see why a pass on chemo could be a decision for some people.   But it is more than a 2% advantage in the short term.  In my case the horse was out of the barn, but it did seem to slow growth of the one.  More scans will show if the others were also kept down (or not cancer.)  For me, at this time and being lucky with the chemo tolerance, if it bought me another year or two, no complaints.  (With the confirmation of the met that was there at the very beginning, sometimes I am feeling a bit more fatalistic :))

Some things discussing the issue (including going to your general point) in terms of chemo and luck of the draw of stage.  Plus CRC stinks for all of this ;)   

http://www.healio.com/hematology-oncology/gastrointestinal-cancer/news/print/hemonc-today/%7B8ef34e9e-07c7-42ca-906f-a44e07a166bb%7D/experts-weigh-in-on-adjuvant-chemotherapy-for-stage-ii-colon-cancer

And interesting piece on the 2% issue

http://scienceblogs.com/insolence/2011/09/16/two-percent-gambit-chemotherapy/

Another discussion on chemo use

https://consumer.healthday.com/cancer-information-5/colon-cancer-news-96/new-test-could-pinpoint-colon-cancer-patients-who-need-chemo-study-707236.html

And some other 

http://news.cancerconnect.com/stage-iii-colon-cancer/

 

 

John23's picture
John23
Posts: 2140
Joined: Jan 2007

You won't learn anything at a "dot com" (commercial site). You CAN learn a ton at the .org sites, and especially from the various Journals of Medicine dedicated to and by the Physicians in the industry.

Beware of what you read on the web.

Good Health Hopes!

John

 

 

NewHere's picture
NewHere
Posts: 1197
Joined: Feb 2015

While the intent back in the day may have been for .org to be non-proift/non-commercial it is not the case.

Beware of what you read on the web.

LOL.  So very true.  But so difficult to say on the web, because, well it is on the web.   In fact I read on the web that chemo only has a 2% advantage ;) (I am now reminded of the scene from Animal House when they are contemplating their thumbs.  MIND BLOWN!!!. )

I looked around and the one study referred to in my post above seems to be the only one that discusses the 2%.  Other than sites that seem kind of iffy trying to pitch alternative treatments, this https://www.nps.org.au/australian-prescriber/articles/the-emperor-s-new-clothes-can-chemotherapy-survive was the only one that went into the 2% article.  (google "The contribution of cytotoxic chemotherapy to 5-year survival in adult malignancy" and click on the results.  Lot's of snake oil looking places.)

Found articles indicating benefits more than 2%, and now probably going to keep on looking.  If I miss Monday Night Football I am BLAMING YOU!!! :)

http://ascopubs.org/doi/pdf/10.1200/jco.1989.7.10.1447

http://journals.plos.org/plosone/article?id=10.1371/journal.pone.005549

"Among stage III patients, receiving chemotherapy was associated with a significantly higher OS (5 year overall survival) (68%) compared to those who refused (OS50%) (HR: 2.05, 95%CI: 1.12–3.77, P = 0.02). The Chemo-refusal group had more female and elderly patients, significantly higher rate of severe complications, and lower body mass index (BMI). Follow-up phone questionnaire analysis showed the doctors’ uncertainty of chemotherapy benefit, economic difficulties, uncomfortable feeling, superstition of Traditional Chinese Medicine, concealing information and lack of social support were the main factors for elderly CRC patients to decline chemotherapy."

http://onlinelibrary.wiley.com/doi/10.1002/cncr.25954/abstract;jsessionid=DD0C1432F3D6C9259EDC9892F27BCF1B.f02t02?systemMessage=Wiley+Online+Library+will+be+unavailable+on+Saturday+26th+November+2016+from+07%3A00-11%3A00+GMT+%2F+02%3A00-06%3A00+EST+%2F+15%3A00-19%3A00+SGT+for+essential+maintenance.++Apologies+for+the+inconvenience.

RESULTS:

There were 1053 patients in the study; 648 (61%) initiated adjuvant chemotherapy within 16 weeks of surgery. There was no difference in overall survival or colon cancer-specific survival between those who received adjuvant chemotherapy from 8 to 12 weeks postsurgery compared with those who received it within 8 weeks. However, those who received chemotherapy 12 to 16 weeks after surgery and those who either received it >16 weeks after surgery or received no treatment had a 43% and 107% greater risk of dying, respectively, than those who received chemotherapy within 8 weeks of surgery (hazard ratio, 1.43 [95% confidence interval, 0.96-2.13] and hazard ratio, 2.07 [95% confidence interval, 1.56-2.76], respectively). Analyses were controlled for age, year, and region of residence at diagnosis; sex; neighborhood-level socioeconomic factors; and number of comorbidities.

 

 

 

JanJan63's picture
JanJan63
Posts: 2482
Joined: Sep 2014

Hang on. Your last paragraph. "43% and 107% risk of dying"? Is that a typo?

NewHere's picture
NewHere
Posts: 1197
Joined: Feb 2015

However, those who received chemotherapy 12 to 16 weeks after surgery and those who either received it >16 weeks after surgery or received no treatment had a 43% and 107% greater risk of dying

Seemed to be correct.   Report link below, mentions that 107% in overview in the body..  Will check again in reading whole article.  But the risk of dying looks to be 43% higher is started between week 12-16 and 107% if > 16 weeks or non at all.   Would need to check breakdown in that bracket.  But overall it looks like starting chemo within 12 weeks helps the odds.

 

 

 For some reason the link is not working.  It may be because I originally linked through.  But if you google "However, those who received chemotherapy 12 to 16 weeks after surgery and those who either received it >16 weeks after surgery or received no treatment had a 43% and 107% greater risk of dying"  you should be able to find link.

http://onlinelibrary.wiley.com/store/10.1002/cncr.25954/asset/25954_ftp.pdf

beaumontdave's picture
beaumontdave
Posts: 1061
Joined: Aug 2013

I think you've heard all the good advice, I was stage3b, mass on the sigmoid, with 2of17 nodes. The rest of my story's on my profile. Best of luck to you on your treatment......................................Dave

kmygil
Posts: 881
Joined: Feb 2007

Or:  Things Your Doctor Never Told you

Or:  Things You Learn from Chemo Nurses and Fellow Patients

No matter what you choose to do, stay hydrated and on top of your nutrition.

Walk a little every day.

Listen to your body.

Stay hydrated.  Optimize your nutrition.

If you choose chemo and end up with Folfox4 or 5, bring gloves everywhere.  One of my best moments: hurling a pound of frozen ground meat across the supermarket after I picked it up without gloves.

Get reliable helpers and don't be afraid to ask for help.

Get antidepressants if you get depressed.  You can stop them when you're done being depressed.

Get pissed off with your cancer and fight the thing.

Stay on this forum.  The wonderful people here literally saved my sanity.

Stay hydrated.  Optimize your nutrition.

Did I mention to stay hydrated and to optimize your nutrition?

Hugs, hugs, hugs.

DTrout
Posts: 3
Joined: Feb 2017

i had to laugh when I read that. Had a very similar experience in my kitchen. Thank goodness no one was in there with me!!

miche01
Posts: 5
Joined: Dec 2016

Were you having symptoms that lead you to get tested?

 

tooshort1
Posts: 1
Joined: Dec 2016

I just found out I have colon cancer,the PET scan has found cancer in my liver, left breast and kidney.I am having a biopsy

of liver next week.I am so scared,I don't know what is going to happen,how I'm going to deal with all of this.I will be having

chemco and radiation. Will I lose my hair,I see most people do,will it make me sick .I need help and yes the doctors have told me things but they have not be there.

Joan M's picture
Joan M
Posts: 411
Joined: Oct 2016

It is hard to deal with a diagnosis like that.  Your doctors are the best to advise you as they know the specific treatments of your disease.  I was afraid of the chemo too, but decided that I had to do whatever I could to survive for as long as I can. 

As for me, I found that the new treatments caused fewer side effects than I expected to get.  I lost my hair after a couple of months.  You have probably started losing your hair or will soon.  It will most likely grow back after you finish chemotherapy. 

God Bless you! I hope everything is going well for you.

Joan M

 

cherrob123
Posts: 13
Joined: Mar 2017

My hair thinned a considerable amount but I never lost my hair. Diagnosed Stage IV metastatic rectal cancer spread to the liver and lungs January 2014. Three years later I'm still here. This disease can be beat. It's a hard road but it can be done.

 

Good luck

 

Cheryl

marybrang
Posts: 7
Joined: Jan 2017

My case was very similar to yours: I was diagnosed at age 50 during a routine exam with Stage 3b sigmoid colon cancer (it had spread to my lymph nodes), I had surgery, and then I went through an identical chemo regimen. This past December I met with my oncologist for the last time -- she said I was cured. I had waited to hear those words.

Now for some key details:

Had trouble for the first few months after surgery with using the toilet. There are no polite words for this part. I really only had three accidents...? maybe just 2, but I had close moments, I had a fear of going out for long amounts of time without a bathroom handy -- -it wasn't easy adjusting to my "new normal." Even today, I still have days where I go to the bathroom unusual amounts. I cannot eat exactly the same as I did in the past if I am at work -- I have certain ways of eating (no breakfast, salad for lunch) that works best for me when I have to sit at a desk for the rest of the day.

I don't think I'm unusual, you will have to relearn to a certain extent what foods work for you and what foods do not. BTW, I can still eat anything, I just have to time it correctly if I know I cannot be running to the bathroom as ideally needed.

Chemo... well, chemo was chemo. I had to delay a session shortly before the end because I had become so weak and I needed to build myself up. Still, I soldiered on and came through it and now I'm here. I don't think it's unusual for people to need a break. My one piece of advice for the chemo portion of cancer: Exercise, exercise, exercise. In my case I walked as much as possible. This helped tremendously, lifted my spirits and helped me recover from the surgery.  

After care: No one talks about this but you're kinda like Humpty Dumpty after cancer -- you have to put yourself back together again after it's over and in subtle ways, that's the hardest part. You're no longer up against it but you are more alone, in ways. Everyone sees you as "back to normal" but inside you're anything but. I believe this is the moment where you really must show your stength. This is the moment you learn what you're made of -- in the best way. 

Here's the weirdest part: When I was diagnosed, I had never been so shocked in my life -- I felt perfectly healthy and I was just out of my mind crazy, crying, bargaining with God -- I was like a three year old on the carpet kicking and screaming ...

Today, I can honestly say that I am grateful for the experience, it changed me for the best. It cost me time, it cost me money, but it made me better.

IF I SURVIVED IT, YOU CAN TOO!!!!!  Seriously, you can beat this, lots of people do. I found reading these message boards very helpful, others gave me hope. 

danker
Posts: 1253
Joined: Apr 2012

Trubrit contends only ham is cured!  Us cancer survivors abe currently NED (no evedence of disease).

RetiredNellie
Posts: 14
Joined: Sep 2016

Thank you Mary for the post.  Very helpful, pragmatic and down to earth.  How are things going for you now?

marybrang
Posts: 7
Joined: Jan 2017

Somehow I missed seeing this first time I looked at the discussion boards! I apologize, I didn't mean to ignore you, Nellie.

How are you doing?

I'm fine these days, working at a new job and not looking back. Still, it's always there and any little pain in my abdomin and I worry "it's back."  I don't dwell though. Hey-- something's gonna get all of us in the end! 

BrianChristopher
Posts: 23
Joined: Feb 2017

Thank you Mary your post was good for me to hear.  I too am 50 and had stage 3b sigmoid colon cancer (I say had hoping the surgery rid me of it) My chemo is Xeloda (pill form 5-FU) and Oxaliplatin.  I start Monday for the first round, but my Nuetrophil count is low not sure what the Dr. will say about that, actually I had to call in and ask having noticed it on my last blood work after reading about chemo causing low numbers.  Again thank you for your post it made a lot of sense to me and gave me hope .  brian

Travis8
Posts: 23
Joined: Jan 2017

Hi, I was diagnosed with stage 3 colon cancer and also had a successful resection after 6 weeks or radiation. I followed that up with 12 treatments of mop up chemo. I believe it was the same type you are about to go through. I only had one really bad day every two weeks. The day after the infusion. I never got sick or experienced much nausea, just didn't feel like eating and hard to explain  uncomfortable tingling and weakness. I was still able to work but no hard labor.. i drank boost and milk mixed with powdered milk when I couldn't eat. Good luck with your treatmentd. 12 seemed like a huge number but I counted it down and was proud of the strength I had to go through it when it was over. Gonna be some bad days but Support from forums like these really helped me.

 

 

 

 

 

 

 

blessed39's picture
blessed39
Posts: 90
Joined: Dec 2016

Dear shifra.  If you would be interested in reading my story "How I Beat Stage Four Colon Cancer" just go to my page

blessed39 and click on blog and my story will come up. I don't give medical advice, just what worked for me. God bless

blessed39

BrianChristopher
Posts: 23
Joined: Feb 2017

I recently was diagnosed with Colon cancer Stage 3 which affect one lymph node, had the resection surgery and recently the port put in.  When I looked at my CEA number it was 5 before surgery and now it is .7.  However I keep reading about low Neutrophil count (nuetropenia) and so when i looked at my count it is low even before I begin my Chemo (Oxaliplatin) and Xeloda.  I called my Dr. and the nurse said not to take the pills until I come in for a lab.  I thank all of you for the information and sharing your personal journey.  As I begin mine... I do so with much trepidation.  Probably due to the internet education i have been digesting but also because this all began for us onn Dec. 5th 2016.  I am trying to be strong for my wife Tammy, and my son Daniel-9, and my daughter Grace 11, but to be honest "trying" is all i can muster right now. May God Bless us all

marybrang
Posts: 7
Joined: Jan 2017

What I didn't put in my first post is this:

Everything happens so quickly when you are diagnosed with cancer. You must make a lot of drastic decisions in very short order without having the time to take in and really think about the choices you are making. I felt barely functional and not quite recovered from the utter shock to my system that was surgery and yet my doctors were already hurrying me into chemo.

In other words, I wasn't prepared even if I still went along with my doctor's plan.  However, after that first chemo session (5-FU and Oxy), I had a major freak out and truly thought about ending my treatment there.  

The feeling of chemo in my body was hideous. I will not go into details because other people do not find it so terrible. Still, I chose to stick with the course, telling myself that all these scientists had come up with this baroque method for treating cancer, and, since I'd bought into the first part of the plan (surgery), I might as well trust them and fulfill the plan.  (I'm not sure that's entirely reasonable but that was how I framed my decision.)

Despite the fact that I'd beome so weak toward the end, I still think of that very first chemo session as the worst. Sadly, you get used to it somehow. You even learn how to disconnect the IV from your own port! 

It's all personal, BrianChristopher. These choices are yours to make. You're probably still in shock, so you probably don't even feel like you're making choices -- you possibly feel like you're being rushed into things -- but these treatment options are simply choices about your life. There are people who only have the surgery and skip chemo. There are people who don't even have surgery.  Dig dip, talk to family and friends, meditate, pray, whatever... but GET WELL. You've got a family and this is a hurdle. So you need to do whatever YOU believe is necessary to clear it and keep running forward.

And if you choose to follow your doctor's plan, there will be a schedule of sessions and blood work and discussions of whether your white blood cell count is high enough or whether your liver enzymes might be indicating a new tumor.  You're intimately involved and yet you feel like a passenger in your own body. Cancer is a weird experience, just get through this part as best you can with as much dignity as you can and try to remember your real life is waiting for you on the other side.  

BrianChristopher
Posts: 23
Joined: Feb 2017

Well my blood count was up just barely and so we proceeded with the infusion of Oxaliplatin, and I started the Xeloda last night, the cold sensitivity is real and immediate, a little nausea but really not bad, which is really good.  My kids are checking me and looking to see if something weird is happening and so I try to keep my attitude in check and allow my hope to shine for them for my wife and me.  thank you for sharing and it is so helpful to have you and those who have gone down this road to help us who are beginning on ours.  We are each unique beings and so our journey will be as unique and our own.  I pray we all experience that healing that begins within our souls and permeates our bodies.   Brian

marybrang
Posts: 7
Joined: Jan 2017

Just catching up now. Hope you are continuing forward and your family is taking care of you. For me, chemo-time was just head down, keep moving, do anything to avoid thinking about it.

YOU CAN DO IT!! 

BrianChristopher
Posts: 23
Joined: Feb 2017

I am blessed with my wife Tammy, daughter Grace and son Daniel whose love is my strength.  Your posts and all the other have shined a light on my dark path.  For this I am grateful, each night my family and I pray for healing of us all.  So I will push on. Brian Christopher

 

Trubrit's picture
Trubrit
Posts: 5192
Joined: Jan 2013

I will not go into details because other people do not find it so terrible. 

On the forum you can post whatever you feel is helpful to other members.  I know how you feel, because I also went through a horrendous chemo and even more horrendous radiation series; yet, when I post about how terrible it was, I sometimes feel other people think I am over-exaggerating or sewing fear into the new members, so I keep it simple.

I did post a list, an extensive list, of the side effects I had during chemo.   

My point is, don't be affraid to add whatever you feel is appropriate in helping others.  Your two posts so far have been wonderfully informative. Welcome to the forum.

TRU

marybrang
Posts: 7
Joined: Jan 2017

I CLUNG to these discussion boards all while I was sick -- without ever posting, I just couldn't for some reason -- so now I am wanting to offer encouragement wherever I can.  The people who had survived and written about their experiences gave me hope... each time I read  "4 years NED," or "visited my onc who gave me good news" I felt hope... That's why I'm here -- just trying to impart a little hope. 

Cancer is a grim business, after all! 

BrianChristopher
Posts: 23
Joined: Feb 2017

Thank you, I have always found your advice even keeled and your attention especially to newcomers very generous. Your shared experiences may not be mine but a shared journey is made lighter even when it is uphill.  Brian Christopher

Joan M's picture
Joan M
Posts: 411
Joined: Oct 2016

When you describe the side effects from treatment, it helps others know that they are not alone in their suffering and that they can make it.  So many of us put on a brave front for our family and caretakers, and often minimize the suffering we endure from the chemo and other treatments so that we don't burden or bore our listeners.  We know that when people ask how we are doing,  most of them they really don't want all the gory details. 

I joined this forum to find hope and to get real information to help battle cancer.  I have been helped by the details of treatments and how to survive and/or reduce the negative side effects.  

Personally, I want to know what the worst case scenario is so that I can find the strength to endure it knowing that others have suffered and survived.  One of my cousins survived 3 different cancers over the last 27 years and she told me graphically how bad it was for her at times, such as when she went through a bone marrow transplant over 20 years ago due to the chemo and/or radiation destroying her bone marrow.  She said she was in and out of conciousness for 6 months, hallucinating and crying, and praying to God to help her get through it. She had it rougher than others who have gone through bone marrow transplants, but she fought and survived despite the pain and suffering and is alive 20 years later to tell her story.   She had hand & foot syndrome from chemo and had blisters on the soles of her feet and couldn't even walk.  Her daughter helped by putting cold washclothes and ice packs on her feet to help ease the pain.  These are stories of a survivor and what she did to survive. She told me all about her experiences so that I would know and understand that if she could survive, I could too.   She is alive and well all these years later, now almost 70 years old, still working and living in her own house/   

Never be afraid to post your details.  It can be especially helpful because you may find out how others have dealt with and survived similar problems.

 

marybrang
Posts: 7
Joined: Jan 2017

we all need different things... some of us need the gritty details, others need jokes... it's all good on the discussion boards!  

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