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Is chemo really necessary?

Cosette24
Posts: 14
Joined: Jun 2020

It is still difficult to talk about, but this seems like the only place for now where I can do so. Last month, my husband was diagnosed with early stage III colon cancer at age 29. It was a massive shock and the scariest time of our lives. Thankfully, by now we are almost out of the woods. My husband had a PET scan done which showed that the cancer has spread to only one lymph node. This was followed by a surgery where he had the entire right portion of his colon removed along with 23 lymph nodes and only the one tested positive for cancer cells.

Now, we have been referred to an oncologist for adjuvant chemotherapy. The oncologist is recommending 3 months of chemo; 4 rounds of Eloxatin while taking Xeloda. However, my husband is apprehensive. He is worried about the side effects of chemo and his quality of life during and after it. He says that even with chemo the cancer has a chance of coming back. While I agree that there are no guarantees, I think chemo will significantally reduce the risk of it coming back. The doctor said that chemo will give him 75-80Z% chance that it will not come back. 

I would appreciate any advice or opinions on this situation.

Thank you!

SnapDragon2's picture
SnapDragon2
Posts: 304
Joined: Nov 2019

Do the chemo is my opinion.

feckcancer
Posts: 117
Joined: Jun 2018

i would do the chemo too. from what i have been told if there are any cancer cells migrating to the rest of him via his bloodstream the chemo will kill them. I am glad they got it early. Listen to your doctor. They know what they are doing. Take care & good luck. 

DD3's picture
DD3
Posts: 134
Joined: May 2013

 

definitely persue chemo.  If he can't handle it, he can always quit.  My wife (as with many on here) was given FOLFOX.  In my heart I truly believe it has played a pivotal role in her being 6 1/2 years NED.  I wish you both the best in your decision.

 

Trubrit's picture
Trubrit
Posts: 5175
Joined: Jan 2013

Chemo sucks! It's hard. The side effects are yukkie. Sometimes you wonder why you are doing it BUT THEN you are out the other end, a;;; done, and you get a clear scan, and another clear scan and another and another and another ..... we call it being NED - no evidence of disease, and you think 'I'm so glad I did chemo. I'm so glad I stuck it out. It wasn't fun, I don't want to do it again, but I'm glad it did it'.

I won't beat around the bush. Chemo is no fun - though I have crossed paths with a chosen few how have suffered little, they are in the miniority. But I can tell you, as a Stage IV SIX years NED, I am glad I went through it. I am OK living with the long-term side effects because I am alive, happy and very, very grateful.  

It is a hard decision, and it is hard for you as well. At the end of the day it will be his decision to make, and you will stand by him. Whatever that decision, also decide not to look back. Don't play the 'what if' game.

Good luck to both of you. And stick with us, we'll help you both through.

Tru 

 

SandiaBuddy's picture
SandiaBuddy
Posts: 1089
Joined: Apr 2017

First, the final decision rests with the person accepting the treatment.  With that said, I think it advisable to understand clearly the advantage that chemo can give.  For me, it was supposed to be a 10% reduction in the chance of recurrence (7.5% reduction with the monotherapy I eventually accepted).  I went back and forth on whether it was worth it.  In the end I tried chemo, and regretted it.  The side effects can be significant.  I think you will find a diversity of opinions on this board.  If I were facing the decision again, I would research it broadly and independently, as some doctors seem to favor chemo and that may influence the advice they give.  Good luck with your decisions.

Europa
Posts: 1
Joined: Jun 2020

Your husbands' situation is very close to my own. Stage 3 with 2 lymph nodes testing positive, but I also had a positive anal cancer result. I was able to get through 4 rounds of chemo before I stopped. Dr wanted 6 rounds then radiation for anal cancer then another 6 rounds. 

After 4 rounds I could barely walk. I could peel off huge chunks of skin from the bottom of my feet but couldn't feel it, and still now can't feel a big toe. My hands would ramdomly cramp up and become a ball. I slept all the time and lost 50 pounds. Toward the end I started vomiting as well and was hospitalized after getting a fever and could barely stay awake, they feared sepsis. 

Currently I struggle with what to do. I feel physically sick when I drive by the hospital or think about going back into chemo. They gave me a clear on all my PET SCANS but the adjuvant therapy is supposed to kill the cells they can't see and I still haven't moved forward with radiation treatment. I don't know if the damage the chemo does is worse than the cancer itself and then there is COVID-19 to worry about. 

I am struggling but have decided to get a second opinion from a different hospital and perhaps pursue alternative therapies. 

Tom M.
Posts: 144
Joined: May 2019

Everyone reacts differently with side effects. I myself was lucky. 22 rounds with Folfox and avastin. The treatments work. Don't be afraid. Kill it now. Best of luck.

Cosette24
Posts: 14
Joined: Jun 2020

Hi everyone, thank you for your replies. We have decided to get a second opinion from another oncologist. We are going to see him on next Tuesday. 

As of now we are leaning towards doing chemo, especially since it's only 3 months. We are just worried that some side effects will last and that we won't be able to have children. However, preventing it coming back is obiously more important. 

Lovekitties's picture
Lovekitties
Posts: 3346
Joined: Jan 2010

Make sure to ask about side effects possible with which ever chemo is recommended.  If he goes ahead with it, watch for those and any other changes and report to onc asap...that may help to forestall any lasting effects.  As for children, there is also the possibility of freezing sperm for future use, if needed.

Wishing you both better days and best outcome.

Marie who loves kitties

Annabelle41415's picture
Annabelle41415
Posts: 6512
Joined: Feb 2009

While everyone is different when accepting treatment options given, my doctor told me that chances were that doing adjuvant chemo would be the best for me.  If you trust your doctor and you don't want to ever think back and say "should have", then it's best you come to a final decision and just be okay with it.  Don't hesitate to get a second opinion either as this might reassure you what your decision might be or back up the initial assessment from your current doctor. 

Kim

Gail E's picture
Gail E
Posts: 19
Joined: May 2020

I was diagnosed stage four in 2014. I've had two surgeries in many many rounds of chemo. I am certain that I would not be here today if I had opted out of chemotherapy. For me it came down to, "what do I have to live for? "I want to be around for my son and the rest of my family so I chose the chemo. And I'm still on chemo!

Cosette24
Posts: 14
Joined: Jun 2020

Hi everyone. Just an update. We saw the second oncologist and have decided to go ahead with chemo. His recommendation was the same as the first one we saw, except he recommended 6 months instead of 3. We will stay with the first doctor and do 3 months for now. Apparently,  there are studies proving that in low risk CRC patients, 3 months is as affective as 6 months. We're going in on Friday again to discuss blood test results and set up an appointment for the first cycle. 

Annabelle41415's picture
Annabelle41415
Posts: 6512
Joined: Feb 2009

I'm glad that you got a second opinion, because this will confirm that follow up is needed and therefore they're won't be any reason for you to doubt your decision.  You can go with the 3 months and maybe go from there which is what the original doctor wanted.  Thank you for the post and please let us know if you need further information. 

Kim

Cindit
Posts: 7
Joined: Jan 2020

Hi, 

I was diagnosed with stage IV. I was lucky enough to get into a trial of immunotherapy. While i think the Immunotherapy helped fend off side effects, I also did my own research on how to avoid them. I took zinc supplements (for the taste thing and mouth sores), I iced my hands and feet AND mouth (sucked on ice) during the 2 hour treatment.  I have had hardly any side effects....a little tingling in hands, nothing in the feet and never lost the taste sense. The eloxatin was in my folfox therapy and doc stopped that after 6 rounds (was having some neuropathy in fingers and i type for a living). My hair thinned but not to the point i needed a wig, just a hairpiece. Also, before treatments i would use a aromatherapy nose inhaler of ginger. THAT really helped and i hardly had any nausea the entire time. I'm going on last treatment (have had 11 treatments plus surgery) but will continue on immunotherapy for another year and a half. I would do the therapy again of course because i prefer life to the alternative. Your hubby will get through it with a positive attitude and realizing it's keeping him alive.

abita's picture
abita
Posts: 803
Joined: Dec 2017

Are you in a keytruda trial? I see it was approved for colon cancer today.

Cosette24
Posts: 14
Joined: Jun 2020

Hi everyone! Thanks for all the comments. Husband is going in for the first infusion on the 17th. I will take off from work and go with him. We got a lot of useful information regarding the treatment and side effects. Apparently he will not lose his hair and we will most likely not have any trouble conceiving. The doctor said it's best to wait a year after the treatment is finished. He got anti-nausea meds and a cream in case his skin cracks.

At this point we are just really taking it a day at a time. We both feel much better. My husband has been extremely strong throughout all this but I've been a mess. The anxiety has subsided a bit now and I feel mostly normal. I'm trying not to think too far in the future about all the scans and checks we will need to do in the next 10 years. I'm sure we can handle anything that comes our way but for now I will just enjoy every day as it comes. Thank you for being here and understanding! 

Trubrit's picture
Trubrit
Posts: 5175
Joined: Jan 2013

that he is heading into treatment.  

Do you remember what cocktail of chemo drugs they are going to give him? 

Make sure that he is dilligent in using the cream they have given him, because once the skin cracks, the chance of healing is diminised while undergoing treatment. Best to avoid it happening by using the cream. 

While most colorectal patients don't lose their hair, it can thin out a little or allot or none at all, so just be prepared for all situations. 

If he is on the chemo drug called Oxaliplatin, be aware of neuropathy - numbness in the hands and feet.

It is a good idea to keep a journal of everything that goes on during treatment and afterwards. Then go over any and every concern you have, with his Oncologist before every infusion. 

Be sure and keep visiting here with us, we have a boatload of advice to share, due to hands on experience. 

Wishing him the best. 

Tru

Cosette24
Posts: 14
Joined: Jun 2020

He will be on CAPOX, so yes, Oxaliplatin. They warned us not to let him touch or drink anything cold. I will make sure he uses the cream before his skin starts cracking. 

SnapDragon2's picture
SnapDragon2
Posts: 304
Joined: Nov 2019

Fortunately I was one that had only one side effect from oxaliplatin.  After round 7 my signature looked like crap and I couldn't make the #2 for nothing, it looked like a Z.  After a few days it was OK again.

There's a mouth wash they can prescribe for mouth sores, I forget the name.  I would ask for the script so you have it on hand if he starts to get a mouth sore to keep it from getting out of hand.  Onc didn't want to give it to me until I developed sores.  I replied "No way, my luck would be one pops up on Friday and you will be nowhere to be found until Monday.  Write the scrip."  It has antibiotic and numbing properties in it.  It you swish it in your mouth, your whole mouth is numb. You can use a Qtip to apply just to sore.  Hopefully he will not get any.

Cosette24
Posts: 14
Joined: Jun 2020

Yes, now I remember that he got the mouthwash as well. Was told to rinse with it after every meal. Hopefully that will keep the sores at bay. 

SnapDragon2's picture
SnapDragon2
Posts: 304
Joined: Nov 2019

Good, his onc isn't stingy, lol...Haven't heard of swishing after every meal.  I never got the mouth sores but had the magic weapon on standby, haha.

SandiaBuddy's picture
SandiaBuddy
Posts: 1089
Joined: Apr 2017

Anti-nausea drugs are also a useful thing to have on hand before the treatment starts.  Also, ask for the infusion in the non-dominant arm (left for most of us).  That can keep the dominant arm working better for things like driving, etc.

Cosette24
Posts: 14
Joined: Jun 2020

Hi everyone, another update: 

Husband had his first infusion yesterday and started taking Xeloda. He is doing very well. Had a runny nose after the infusion and some sensitivity in the left arm, but that has stopped now. He has gone to work today. I am hoping he will continue to feel well. He is taking anti-nausea medications, using the cream on his hands and feet and rinsing his mouth with the mouthwash from the onc. 

SandiaBuddy's picture
SandiaBuddy
Posts: 1089
Joined: Apr 2017

Thank you for the update, it is great he is doing well.  My experience with Xeloda (capecitabine) is that the effects can sneak up on you and some days are better than others.  For me, the worst time was in the afternoon.  Some days were great and almost normal, but others I really tried to avoid people in the afternoon.  Hopefully your husband can work out a system where he is able to take off work if it turns out to be a bad day or a bad time of day.  Best of luck with the upcoming challenges!  Hopefully he will be a lucky one who sails through without issues.

Cosette24
Posts: 14
Joined: Jun 2020

He is going to work twice a week now. He wants to go more often, but I think it's better to wait. Thankfully his boss is really accommodating. We are expecting some side effects to come up, but are grateful that right now he is living normally. Taking it one day at a time..

avargov
Posts: 24
Joined: Feb 2018

I found that the side effects occured more as time went on.  Looks like 6 session (3 months), would take to at least the 3rd or 4th before anything really started happening for me.  I was on FOLFIRI w/ Avastin for a little over 2 years (30 rounds I think), and it stopped working.  So now I am on Longsurf (and oral chemo).  Hopefully it won't be too bad.  But, fortunately, the side effects were all manageable with other drugs (magic mouthwash was a Godsend).  We are all here to help if we can, so please keep reaching out!!!

kathy54487
Posts: 2
Joined: Jul 2020

My husband had a large tumor in his intetines that broke through and ate through the muscles of his stomach and adhered to his abdominal wall. They removed the tumor and some intestine and 32 lymph nodes that were cear. They want to do chemo for 6 months (IV) and the pills. he has stage 2-C adenocarcinoma. but the dr says he got it all why such harsh chemo?

SandiaBuddy's picture
SandiaBuddy
Posts: 1089
Joined: Apr 2017

From my perspective, the patient is the boss in health care treatment, and the patient should be well informed of the risks and reasons before making a decision about any treatment.  You might want to make a list of the questions and concerns you have and take them to your next appointment.  Visiting a forum like this is also a good way to ask questions of people with personal experience.  Whether to engage in chemo is a very tough and very personal decision.

PhillieG's picture
PhillieG
Posts: 4907
Joined: May 2005

The bottom line is that I'm in favor of doing the chemo. I can appreciate your husband's hesitation. Getting through each chapter is a challenge so when there's a break in the action you want to savor it. Many of us have been there. 
I strongly suggest that he keeps the momentum going and do the follow up chemo. 

Annabelle41415's picture
Annabelle41415
Posts: 6512
Joined: Feb 2009

It's hard to wrap your head around doing treatment with all the side effects as I've got them after treatment, but like Phil said, each step is (or could be) a difficulty.  Take it one step at a time.  Wishing your husband the best going forward.  Good to see you Phil.

Kim

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