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Stage llb diagnosis - Not sure about Xaloda

kmcgowan
Posts: 7
Joined: Dec 2017

I was diagnosed with llb T3N0M0 colon cancer and still on the fence about taking Xaloda. I am 50 and in great mental and physical health.  I have until the end of next week to let my Oncologist know what my decision is. I welcome any advice I can get. 

Trubrit's picture
Trubrit
Posts: 4157
Joined: Jan 2013

I am so happy to see you post; and please know that apologies were not expected. I would say that 80% of us started our fourm days posting on someone elses thread, me included. 

And wow, you do have a big decisoin to make.  As you have seen from the other post, you are not alone in making this big decision and at the end of the day, it will be yours alone to make. 

Well, I say that, but hopefully you have some loved ones who are there to support. 

I started this journey at a different place than you did, with the decisoin basically taken out of my hands. The tumour was big and had to be removed, and lymph nodes were active and did end up spreading, though not discovered until after treatment. 

I will say that your present physical health has nothing to do with the Cancer.  When I was diagnosed, and especially with my recurrance in the liver, I was as fit as a fiddle. I remember looking at myself in the mirror when I found out my CEA had jumped and jumped again, thinking 'I look so good' and I did, yet that damn Cancer was happily growing away insdie of me. The 'silent killer' is what they call it. So, general health and wellbeing is not a factor I would take into consideration - but remember, that is just MY opinion. 

Have you had surgery?  If so, were any lymph nodes affected? 

I am personally thinking - if it were me - I would go ahead and have treatment. If you haven't had surgery, then you don't really knwo what is going on inside. For me better safe than sorry would be the route I would take. 

There are other things to consider, but I will let those with more knowledge help you out there. 

I wish you all of the best, and hope that our friends here on the forum can help you make this very hard decision. 

Blessings!

Tru

 

abita's picture
abita
Posts: 242
Joined: Dec 2017

Why didn't they see the spreading on the Pet Ct scan they do to evaluate before starting chemo? Nervous just because mine didn't show spreading. Mine was on the liver, but I knew that from the regular CT.

Mine on livver did grow while I waited to recover enough to start surgery. But like you, my tumor removal from bowe was an emergency to get out as it was large and had perforated my bowel. 

kmcgowan
Posts: 7
Joined: Dec 2017

Thanks Tru!!!   Yes, I did have surgery and they were able to completely remove the cancer.  I had 15 lymph nodes taken and all were negative. I had a CT scan of my lower abdomen, that is when they found the tumor, but there was no evidence of it anywhere else.  Later, I had a CT scan of my upper body and it was clean. My CEA level is normal and I do not have any genetic mutations that put me at more risk of recurrence. 

This is such a hard decision to make.  All my family and friends are supportive either way.

 

Trubrit's picture
Trubrit
Posts: 4157
Joined: Jan 2013

There are members on the fourm who have, at your stage, chosen not to go ahead with chemo and they don't post any more because they are living their lives happily. I also have a friend who was Stage I, Had surgery, no lymph nodes and no sign of spread, no chemo and is doing great. 

So yes, you decison is going to be a hard one, and I wish you all the best. 

Worriedchild
Posts: 46
Joined: Dec 2017

with the above history can you tell me what was your CEA before surgery and did uou go for chemo?

Mikenh's picture
Mikenh
Posts: 669
Joined: Oct 2017

Stage II is the debated area for Ajuvant chemo. At stage III, there is no debate. I was T3 with three suspicious regional lymph nodes but pathology indicated no cancer after surgery. The problem is that the cancer could have been destroyed by Neo-Adjuvant Chemo and Radiation. If those lymph nodes weren't suspicious, then I'd be in the same place as you are. But the oncologist can't make the assumption that those lymph nodes were cancerous. So I'm going through Adjuvant Chemo.

Chemo affects everyone differently but I had few side-effects from Xeloda. It dropped my red and white blood cell counts and I tired out more easily but I was still functional and could work full-time. It might have a minimal effect on you or it might have more difficult side-effects. I think that your physical health may make it easier to do the Xeloda as that seems to be the general trend. You lose a good amount of stamina but you may still be functional if you have far more than the average person.

darcher's picture
darcher
Posts: 202
Joined: Jun 2017

 I started out being told it was 3.  After surgery it was downgraded to 2 and was told it was probably the pre-surgery chemo/radiation that killed it off in the lymph nodes. I'm stilll getting the follow up chemo per their recommendation. I took and will be taking again the same stuff, Xeloda.  It's not fun but it sure as heck beats being dead.

I'll be blunt. Unless you have MD next to your name you're playing with a grenade that just had the pin pulled.  How you feel now is no indicator of where you'll be in six months. Cancer didn't get it's nick name of being the silent killer by playing nice.  You've got to slam this now while you're still on top. Do what the doctor recommends.  

Tunadog's picture
Tunadog
Posts: 180
Joined: Mar 2017

My cancer was difficult to stage. I was told "in situ", 4..3..2... couldn't tell until after the surgery.

My doctor sent to a Gastro doc h took a look pressed on it and said "in situ" there's blood and we scheduled a Colonoscopy to take a biopsy. It came back negative. I had another doctor a surgeon take a large sample to biopsy and he took out about half my tumor and it came back negative. I then found the best Colorectal Surgeon in the area, he had an Anal Ultrasound which showed the 5 layers of my rectum. He point out breaks in the layers and indicated that they may be where they took the biopsy or Cancer. He had a special tool to take a snip to biopsy. It came out positive. I had Radiation and Chemotherapy and then surgery. I went in for a routine LAP three hour surgery, it lasted six hours with no,transfusion. They got most of it but had scattered within my abdominal wall, no lymph node involvement. Then six months of Oxi and Xeloda and scanned clean, although there was undetermined lighting near my sacral on the PT scan. I was off the Chemotherapy.

I had a recurrence and I'm responding excellently to Xeloda and Avastin,  my CEA is at 3.2 and going lower.

I'm a IIb. I'll be on Xeloda until I'm dead or NED. 

Trust your doctors, best of luck on your decision. 

Life is a journey...

Mickeyclaude's picture
Mickeyclaude
Posts: 21
Joined: Dec 2017

i am also stage 2A. I am going to set up appt. w oncologist. I see your lymph nodes were not affected , same here...I may base my decision on the results of a genetic test I took...did you take that too?

 

Tunadog's picture
Tunadog
Posts: 180
Joined: Mar 2017

My Oncologist had them take a sample during surgery. He has informed me about everything.

It did not change my treatment.

Mikenh's picture
Mikenh
Posts: 669
Joined: Oct 2017

That sounds like Genomic Tumor Testing - usually to determine your gene mutations(s). Good thing to know though usually not covered by insurance.

Mikenh's picture
Mikenh
Posts: 669
Joined: Oct 2017

There is a genetic condition where Xeloda/5FU is toxic as the body can metabolize it to get rid of it. I think that any oncologist going with 5FU or Xeloda has to order this test. I'm not sure that that's the same testing that you're talking about though.

 

kmcgowan
Posts: 7
Joined: Dec 2017

Yes, I had no genetic mutations, my CEA levels are normal, and I had an upper CT scan that came back clean.  It's a tough decision!

kmcgowan
Posts: 7
Joined: Dec 2017

Yes, I had genetic testing and I had no mutations

Worriedchild
Posts: 46
Joined: Dec 2017

Please can you explain me what was the genetic test you went through and what were the results??

kmcgowan
Posts: 7
Joined: Dec 2017

Hi Worriedchild, I had an extensive genetic pannel done to see if I had any genetic mutations that would put  me more at risk for recurrance, as well as many other types of cancers: breast, liver, lung, etc...

I the tests came up negative.  My CEA was 4 prior to surgery. I am not sure what the exact number is now, but my Oncologist said it was normal. I also had an upper CT scan that came up normal. 

I have decided to go more of a naturopathic way of fighting off any cancer cells.  My Oncologist will be seeing me every 3 months so I go next in March. 

 

Tunadog's picture
Tunadog
Posts: 180
Joined: Mar 2017

I have been completly tested. Only had to yell at the insurance company once, for a test on the operating table.

The test for Xeloda toxicity would have been before Radiation and Chemotherapy, I.e. Before surgery.

jodad
Posts: 5
Joined: Mar 2017

Not trying to nit pic but my understanding is that T3N0M0 is stage IIa.  I only mention this because it may affect the advice people give you.  My son was IIb and chemo seemed to be a no brainer because he had several other risk factors.  If you do not have any risk factors then it makes it a tougher call.  For what it is worth, my son did 6 months of FOLFOX and did not have any major issues.  He is 1.5 years from his surgery and is NED.

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Mickeyclaude
Posts: 21
Joined: Dec 2017

thankyou both for your input,  I appreciate everyone  their experience so much

 

Hoot
Posts: 1
Joined: Dec 2017

New here.  But I was diagnosised with rectal cancer on April 4th.  Had chemo (Xeloda) and radiation first.  Had to stop Xeloda early because it was making me sick and I couldn't finish my radiation.  However I did finish and had surgery on 9/11.  Now I am going through chemo again bc 2 of my lymph nodes were affected.  One the cells were dead and the other there was a very small amount.  So he started me on xeloda and oxiplat.  Now he has taken me off the Xeloda and wants to put me on the chemo pump bc my body is not tolerating the Xeloda.  My WBC is very low.  Has anybody had the pump and how does it work and what are the side effects.  Scared!

Trubrit's picture
Trubrit
Posts: 4157
Joined: Jan 2013

Welcome Hoot.

Can I suggest you start a new thread here    https://csn.cancer.org/forum/128

That way we can all answer your question without running up the original thread.  I personally have lots to say about the pump (I always have lots to say).

Look forward to seeingy our new thread.

Tru

abita's picture
abita
Posts: 242
Joined: Dec 2017

I am on the pump. My tumor was in my sigmoid colon. Which was removed with the tumor, and now I am on oxiplatin, leucoverin, and 5fu to shrink the lesions only liver so my surgeon can remove them, and to kill any tiny hidden cancer cells that might come back as cancer. I  don't love the pump, but it is tolerable.  In fact,  the hardest part for me is how as sad my youngest cat is when I come home with it every other Monday. Mishaps have been walking past a door and the tubes getti ng caught, forgetting it until it hits the floor,  and not realizing my middle cat had opened the Velcro window trying to find where the sound was coming from. It makes the same sound as the iv in hospital does. That did make it hard for me to fall asleep, so I leave the tv on. The nurse gives you a little demo of what to do if it beeps, like if the tube is twisted or what have you. I go back to the hospital  on Wed 30 minutes before it finishes, and the nurse takes it out. Somehow, my subconscious makes my body be more still when I sleep with it. That was a huge fear for me. The strap is adjustable. I mostly carry on my shoulder, but if doing something like cooking, I wear it crossbody. That is a little uncomfortable for me with my chemo port but fine enough. I think the the oxiplatin is the cold side effect, so I guess the 5fu is the numbness. I really am not sure. But my lips get a little numb, and the area on my surgery scar is numb. I have only had 3 so far. I can say, I really don't like it, but for me it is what it is. On the first night, I remind myself it is only two nights. On the second night, I think, tomorrow I get to return it. The side effect that affects me the most is the tiredness and fatigue but I have no idea if that is the oxiplatin or the 5fu. The tubes are sturdier than those that are used on the iv the hospital has. But yes, the fear of it spilling somehow is always in the back of my mind. Especially with 3 cats who would be curious and hard to move away from the poison. They give a little wipe up cloth, just in case. You can stop the pump if somethi my happens, and there are the clamps. Any other questions I can tell with? Honestly, it sucks, and my attitude is really just that in the grand scheme, 6 months is a blip and this is something I have to do to be cured so it is what it is. But my case is different from yours in that mine spread to my liver, and I don't have a choice. 

Annabelle41415's picture
Annabelle41415
Posts: 5330
Joined: Feb 2009

That is what my recommendation was along with radiation for rectal cancer when first diagnosed.  Never had any problem with it and it didn't bother my hands or feet very much as they said to apply a lot of lotion to both.  Stage 2 can be very debatable as far as treatment because if it comes back it can come back with a vengence and then it will be a lot harder to cure once it has returned.  You do whatever you and your oncologist thinks best but make sure you do it with no regrets.  It's hard to look into the future and even harder to look back and say "if only".  Best to you.

Kim

abita's picture
abita
Posts: 242
Joined: Dec 2017

Why lotion to hands and feet?

Annabelle41415's picture
Annabelle41415
Posts: 5330
Joined: Feb 2009

For some reason that medication targets hard the hands/feet and makes them burn or loose skin and turn red.  You should put lotion on these areas just to prevent cracking and sores.

Kim

Mickeyclaude's picture
Mickeyclaude
Posts: 21
Joined: Dec 2017

To clarify what tuna dog responded to, I was tested for genetic mutation. i am just factoring it in to my decision ...km is probably hesitant in the same way as I am, as our stage it is more of a choice put before us than a strong recommendation...

 

darcher's picture
darcher
Posts: 202
Joined: Jun 2017

  Next time you see the oncologist ask them what would they do if it were them.  I bet they'll say take the Xeloda or what ever it is they're recommending.  Don't let a low CEA score or not feeling bad fool you.  My CEA was only a 1.3 and that was after being first diagnosed.  The only reason I ended up being diagnosed was because I was passing blood and got a colonoscopy.   If it weren't for that I'd be screwed by the time it did make its move.  

Worriedchild
Posts: 46
Joined: Dec 2017

please tell me if your cea was 1.3 

where was the tumor and what was extent ? Ct abdomen and PET report? Localized disease??

Worriedchild
Posts: 46
Joined: Dec 2017

Please tell me what was your Ct scan or PET scan report if your CEA was normal and what was stage

Worriedchild
Posts: 46
Joined: Dec 2017

greetings everyone

iam worried child of a father diagnosed with Stage 2 Adenocarcinoma of transverse colon he had obstructive symptoms

he was operated in emergency all his Lymphnodes are Negative liver clear cea 3.95 but my concern is does he need PEt scan because we couldnt get it done before surgery any body with same situation please help

Annabelle41415's picture
Annabelle41415
Posts: 5330
Joined: Feb 2009

First off I'm sorry to hear of your father.  Stage 2 can be very treatable especially if they find no spreading.  He should definitely have a CT scan done as this will tell if it has spread.  PET scans are hard to approve through the insurance companies as they are very expensive and the insurance companies don't want to pay for it.  CT scans are more easily obtained and can show a great deal in spreading.  Make sure someone goes with him to the Oncologists' appointment and ask for a CT scan.  Also, you should start a new post about your dad.  That way people can respond only to your questions.  Wishing your father much luck. 

Kim

Worriedchild
Posts: 46
Joined: Dec 2017

We had his ct abdomen pelvis it was clean anybody with same situation can you guide me did you opt for chemo or not  doc is leaving this decision upto us

Annabelle41415's picture
Annabelle41415
Posts: 5330
Joined: Feb 2009

When you are presented with an option to "take or not" you have to be very careful in the decision and if you choose not to and the disease come's back you have to be comfortable with the decision you made not to take it. If however you choose to take the treatment you also have to be aware of the side effects but also know that this is a "mop up" chemo which can catch any lingering cells that could possibly spread to other areas of the body.   Just remember, it's a decision you can live with or possibly regret.  It's hard that's for sure.  Good luck and best of luck to your dad.

Kim

abita's picture
abita
Posts: 242
Joined: Dec 2017

I am on folfox as one of my infusion drugs. I don't really have a choice but to complete mine after the 4th infusion. I say after the 4th because hopefully the first 4 shrink my liver Mets enough to remove. Since mine spread, I feel I have to complete all 12 to give me the best chance for no recurrence. 

Annabelle41415's picture
Annabelle41415
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Joined: Feb 2009

A lot of people call this "mop up chemo" after a lower stage, especially if there was surgery involved.  If they remove the tumor and get clean margins there is no guarantee that during surgery there wasn't some microscopic cells that got loose so they want to do a "mop up" to rid those cells before they can spread elsewhere with chemo.  Just remember if you are given the option and it comes back, you can't second guess and say "what if".  You have to make sure the decision you can live with.  It's hard, but there can't be any regrets either way.

Kim

Worriedchild
Posts: 46
Joined: Dec 2017

thankyou my dear i would need some more info would like to share your stage, chemo drugs and CEA level what was CT scan report i shall be grateful

keefer
Posts: 4
Joined: Dec 2017

My 2a brother is taking xeloda and doing radiaxn for colorectal ca.... Said his dr told him NO coffee or tea WITH MEALS (interefers with iron absorption????) although he's allowed to drink both (as desired) between meals. Is this "solid," or is this yet another reason to not completely trust this onco?

Thanks!

kEEfEr

Mikenh's picture
Mikenh
Posts: 669
Joined: Oct 2017

I don't recall this restriction but my chemoteach was back in July. I'm taking Xeloda right now and sometimes I take it with a cup of tea if it's a drink that I have handy. I sometimes drink coffee or tea with meal - again if there happens to be a drink handy. So I'm curious about this recommendation as well.

Cathleen Mary
Posts: 827
Joined: May 2011

Just to offer another opinion. I was 11b 8 years ago and chose no chemo. I had some risk factors...7.5 CEA at diagnosis, obstructed. Although my CEA hovers between 3-5, I have not had a recurrence though have continued to be followed closely. In fact, will have a CT tomorrow. I have had a lacunar stroke in that time but no cancer. Again, there is no right or wrong but you need to be able to live with the decision and have an oncologist comfortable with that route. If my onc had disagreed, I would have listened. My situation was presented to the tumor board at the major teaching hospital where I was treated and there were differing opinions. A difficult decison for sure. Best wishes for peace in whatever you decide.

CM

Worriedchild
Posts: 46
Joined: Dec 2017

thankyou dear please tell me if it was stage 2 did they ask you to go for PEt after surgery

Cathleen Mary
Posts: 827
Joined: May 2011

Not certain the question re the PET scan is being asked of me...but if it is....no, they did not.

Best wishes,

CM

 

Worriedchild
Posts: 46
Joined: Dec 2017

thankyou so much my father’s onco decided NO chemo just 3months followup and scans cea hus genetic test is yet to ne done

Mickeyclaude's picture
Mickeyclaude
Posts: 21
Joined: Dec 2017

hi worried child. The oncologist goes over the pathology report with you and looks very closely for risk factors. When I was told she could not find any risk factors to assume a recurrence I was greatly relieved...the main reason I am comfortable forgoing chemo was that the four proteins involved in replicating d.n.a in the nucleus of my cells ( I think called mmr) we’re working properly. In that case, chemo is actually not advised. The follow ups are three months apart for me too. By the way, I thought pet scans were not used on colon area? I was told only ct scans?

Worriedchild
Posts: 46
Joined: Dec 2017

we were advised PET cT for my dad because his ct showed some soft tiasue nodule in ct in lungs ( he was tuberculous patient too) so to confim if they were from TB we had PEt and they were calcified old tb nodules

Mikenh's picture
Mikenh
Posts: 669
Joined: Oct 2017

I believe that MMR is mismatch repair. This is a genetic mechanism to repair mutations.

Worriedchild
Posts: 46
Joined: Dec 2017

hi hope you are doing great

would you help me by telling me what did your onco decided about chemo and what were your symptoms at time of diagnosis and how was it stage 2b In colon?

Annabelle41415's picture
Annabelle41415
Posts: 5330
Joined: Feb 2009

You've posted a while ago but just wondering how you are doing and what you decided.  Hope things are going well.

Kim

Worriedchild
Posts: 46
Joined: Dec 2017

hello Kim

oncologist decided NO chemo because there is very few percent chance of benefit of chemo in stage 2a so he said he in his opinion doesnt want to burden normal body since in a recommenndation is it said if person is doing well physically chemo is not recommennded too and my dad asked him if he can take only xeloda doc said i still wont recommend only 3 montly followup fresh fruits and exercise 

thankyou for asking :)

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