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Afraid to do chemo

wifetojeff69
Posts: 27
Joined: Aug 2019

Hello everyone,

Beginning of July 2019 my husband was diagnosed with stage 3 colon cancer. He just had his surgery and is 8 days out. He had 18 in of his colon removed (oddly the surgeon said he had extra colon), surgeon said all cancer is gone and he is recovering ok, little rocky here and there. Now in about 4 weeks he will start 6 months of chemo flofox.  The biggest thing is the nausea he has had since about a week even before his cancer diagnoses. No one seems to know what is causing it. Due to all this nausea he keeps saying he doesn't even know if he can go into chemo already feeling horrible every day. It scares me to think he wont do the chemo. This has been so difficult to see him feel so nauseaous the last month and a half.What if he decides not to do chemo or start it and not finish?

Trubrit's picture
Trubrit
Posts: 4780
Joined: Jan 2013

They will give him meds to counteract the neausea, at the time of infusion; but if he is already expereincing unrelated nausea, I'm not sure how they will work. 

There are Stage III members who have opted out of chemo, and are doing well. Trouble is, you just don't know.  For most of us, doing chemo is like covering our bases. 

Just for info, I was Stage III B, went through FOLFOX/5FU & Radiation, and the Cancer spread to the liver. So, as horrible as it was at the time, I am grateful that I stuck it out; becasue as of now, I am Stage IV and five years NED - No Evidence of Disease. 

I wish you both the best, as you make the decision to get treatment or not. 

Tru

cinda
Posts: 12
Joined: Jul 2019

They want me to do chemo ,I don't want to do it mainly because I did radiation and some chemo already and the cancer spread anyway.The surgeon say maybe the new area isn't cancer.He say he'll open me up and take hold of my colon if its hard its cancer if not it isn't. sounds crazy to me. Anyway I have no faith that they know what their doing.Chemo does have a lot of side effects.Your husband could feel different as time get closer.I took nausea drug when I was on it and they do work. He could try chemo and the nausea drug if it doesn't work he can stop chemo . As a cancer patient myself I know our feeling about whats happening changes daily. Just tell him you support his decision no matter what he decides. He will relax and really think it though other wise he'll feel pressured from you and the doctors. If he feels your on his team it will make him feel so much better. Hope his healing goes well. prays to you and your family!

          Cinda

 

Lovekitties's picture
Lovekitties
Posts: 3322
Joined: Jan 2010

Have his doctors tried any meds already for his nausea?  I know there is one which is wafer like to go under the tongue.

Some home "remedies" would be anything with ginger ...such as ginger ale or ginger snaps.  I would "de-fizz" the soda with a bit of water to begin with.

Wishing your dear hubby the best.

Marie who loves kitties

Annabelle41415's picture
Annabelle41415
Posts: 6149
Joined: Feb 2009

Being sick can be so hard, especially when you just went through surgery.  Ask his doctor for some medication to help control that.  I'm surprised that they haven't addressed this issue before now.  Make sure that this is under control and then he will feel better about starting treatment.  Welcome to the board, and don't hesitate to ask more questions.  We have a great group of people here that have been through almost everything.  Hope your husband feels better soon.

Kim

SoCal42's picture
SoCal42
Posts: 21
Joined: Jul 2017

I receive two very strong IV anti-nausea drugs with every infusion, along with Zofran to take at home, because I have so much trouble  nausea. They do a very good job of controlling it, and I often don’t need to take Zofran as often.

SandiaBuddy's picture
SandiaBuddy
Posts: 858
Joined: Apr 2017

Quality of life, mortality and chemo are all difficult issues members of this board face.  If the sole issue is nausea, there is a good chance medication can help.  But perhaps there are other issues at play as well.  It might be educational to spend a few hours reading through old posts to see the issues about chemo discussed here.  Members of this board have a unique perspective and experience that is unlikely to be known or shared by doctors.  This is a very difficult and personal decision and I hope you can undertand and support your husband with the issues he faces.  Best of luck to both of you.

wifetojeff69
Posts: 27
Joined: Aug 2019

Thanks everyone, so right before he was diagnosed he started getting nauseasted but it ws only a couple short times during the span of a week so he just blew it off as he just had a couple off days. Then a week and a half later approx. he got the cancer diagnosis. He then had a lot of anxiety (which I'm sure everyone does after getting this diagnosis), so his doctor gave him some ativan until he saw his surgeon, his nausea at this time was still not a huge issue if was very ocassional. It gradually kept getting worse, they gave him zofran, phenergan and ativan. He did not think the nausea had anything to do with anxiety as he had it before finding out so he went to his doctor because he was having a lot of heartburn, but his pcp blew it off to anxiety nerves and put him on an anxiety medication and told him to follow up with his gastrointerologist, so we did that, being he was going into surgery in a week he did an upper endoscopy a few days before to rule anything out, ulcer, reflux ect.everything came out good, he wants him to do a gastric emptying study but we went to do that a couple days before his surgery but he was to nauseated to eat so didn't do the test. Post op he continued to have the nausea in the hospital, his surgeon doesn't believe it has anything to do with the surgery since he had it before hand. They gave him more nausea pills to take home.  During this time we reached out again to his pcp and said he still has the nausea but he dropped it back in the gastrointerologists lap. Meanwhile these last few days the nausea has gotten so much worse and it seems none of the nausea pills are working, his gastro interologist is doing a MRI of his head and we are having his thyroid tested. My husband had a benign brain tumor that was removed about 5 years ago, it was a very rare calcified tumor and the doctor did not believe it would ever come back but so hopefully we will get results from these soon.

 

As for the chemo thank you, it is hard to think he wouldn't want to do it to be safe. So when you had stage 3 did you have surgery and all the chemo before it moved to your liver? That is what he is afraid of, he thinks whether he does it or not it will come back, just because we have known someone that this happened to although he had colon cancer in 1992 and they didn't expect him to live longer than 5 years however in about 2016 he got lung cancer and died so I think his was 2 separate things.

I think he would feel much better going into chemo if he wasn't already so nauseated. I will look through all of the posts and see what info I can find. I would be curious to know how others did on folfox. thank you

Trubrit's picture
Trubrit
Posts: 4780
Joined: Jan 2013

Remember mine is just one story, and most all of the Stage III forum members, no longer visit the forum as it is a sore reminder of what was a troubling time in their lives, so here, you will see many Stage IV, and our story is different. 

I guess what I am saying is, you will not get a balanced view of Stage III by reading on the forum, because all of the 'happy endings' or those Stage I II & III are no longer participating on the forum. 

As for my story, my liver tumour was always there, they just didn't pick up on it until after chemo.  I had surgery (bowel resection), chemo FOLFOX - 5FU then radiation & 5FU.

I had my liver tumour ablated and that was in April 2014.  I have had clear scans ever since. 

Obviously I can't tell your husband what to do, but I can tell you that as hard as it may seem right now, going forward with a positive attitude helps tremendously.  He has to WANT to live, thus he will do what it takes, and allot of that can get uncomfortable for a while. 

From my own personal experience, I am very, very happy that I went ahead with treatment, and believe me, it was a rough ride. But I am happy and healthy and alive to live. 

I pray for strenght for your hubby, and also for you. It is no easy task being the loved one, caring and supporting. 

Tru

beaumontdave's picture
beaumontdave
Posts: 974
Joined: Aug 2013

Sorry the nausea is such a problem, I had a minimal amount through Folfox, so I haven't any suggestions. I was 3b at diagnosis, but two years or so after surgery and chemo, it pops up in the liver, 3 places. The onc/surgeon said he believed it was there before chemo. It popped up in one more spot in the liver 2+ years later, but I'll be 5 years NED come Sep 5th. I don't know if the chemo did anything, like in the bloodstream or elsewhere, but they didn't call for it after the liver stuff, so I guess it didn't work well enough, but everyone is different. Good luck to you...................................................................Dave

flutemon's picture
flutemon
Posts: 13
Joined: Jan 2019

I was originally staged as 3b a year and a half ago. 4 months later, after right hemicolectomy and xeloda they found 5 mets in my liver.  I did 6 rounds of folfiri with avastin, had liver resection for 3 mets, radiation (sbrt) for the other 2 mets, and then 6 rounds of folfox for clean up.  I have now had 2 clean scans.  It's been a bit of a battle, but I am now considered NED (no evidence of disease).  I didn't really have side effects with the chemo because of all the pre-medication.  Just stay on top of the side effects, report any problems to the oncologist, and keep a positive attitude.  It CAN be done!

SandiaBuddy's picture
SandiaBuddy
Posts: 858
Joined: Apr 2017

Only eight days out of surgery life can be pretty tough.  Hopefully, things will improve as time goes by.

Is there any possibility the anti-nausea meds are making things worse not better?  Sometimes drugs affect different people in different ways.

I have had a heck of a time with "heartburn," especially since the surgery.  I find that drinking a teaspoon or so of baking soda in water helps, especially when I have problems while eating.  It may be worth a try.  Also, Cimetidine [second link] (tagamet) likely has an anti-cancer effect, especially in the time period around surgery (look for old posts on this subject).  It also might help calm his stomach.  I have found that ranitidine (zantac) is very effective, but it has a big kick-back effect when I stop it, so I do not take it regulalry.  But if the problem were wrecking my quality of life, I would probably just take it every day.  Both drugs are available over the counter, the prescription dose is generally double the amount on the otc product.

For what it is worth, I was a 3b, did a limited course of chemo that almost killed me, and I wish I had not done it at all.  I am 2.5 years NED.

Finally, I am of the opinion that exercise helps with everything.  It is hard after surgery, but walking every day and increasing the distance as he can, might have a positive effect.

AnneO1965
Posts: 19
Joined: May 2019

First, I hope your husband starts feeling better. Cancer sucks.

 

I was diagnosed as 3B, and I did 28 days of Xeloda and radiation. I then did 4 months of Folfox.  I then had my surgery. I'm two months out from the surgery and just now starting to feel better. I've still got a small area that hasn't completely healed, but it will... Eventually...

 

I got really lucky during the chemo, and didn't have many side effects. Just the neuropathy, and my hair thinned out a little. Your husband may get lucky and the chemo may not affect his tummy.

 

I ask about an ulcer because it sounds a lot like what my dad went through when he had one. And the stress doesn't help it. Maybe you can ask the doctor to check for that?

 

Either way, good luck!

LSU2001
Posts: 22
Joined: Dec 2017

During my first year on chemo, I lived with nausea almost continously.  I told the doctor and he tried every anti-nausea med that he could think of and nothing really helped.  I was taking zofran probably 5-6 times a day and eating was a massive struggle.  I did get to where I would eat even if nauseated.  To make a long story short, my regular onc went on vacation and I had to see another Onc in the center.  I told her about the nausea and she really started asking questions and in a few minutes told me that what I was describing did not sound like chemo caused nausea but gastroenteritis.  She ordered me a scrip of zantac and withing hours the nausea was gone, not better, gone. My current Onc has me on protonix for the gastric inflamation and I still get nauseous from time to time usually the day after my pump is removed.  The nausea now is mild and easily controlled with zofran.  I was amazed that a little change like that made such a world of difference for me. 

Tim

wifetojeff69
Posts: 27
Joined: Aug 2019

Thank you for the replies. When it first started he went to his PCP and basically because he went in after the cancer diagnosis and feeling this before that he blew it off to anxiety, which I do not doubt he had. The nausea increasingly got worse so we reached out to his gastrointerologist and he cahnged his medication for reflux and he did an upper endoscopy a few days before his surgery and every looked good, no ulcer and said everything looked good. He is suppose to have a gastric emptying study to see if he has slow motility but he has been nauseated and hasn't done it yet. They have so far checked his thyroid, cortisol and he just had a unltrasound for his gallbladder. Our biggest fear at this moment is that he has a brain tumor, he has an MRI for this next week. He had a calcified benign tumor removed at the stem of his brain in 2015, a very rare tumor the doctor said would not come back but I dont know or fear it is a different one. 

I am so afraid for him, here he has cancer, now he developed CIDP an  autoimmune disorder that where his body is attacking his nerves that he had 15 years ago that seems to have come on since his surgery. We are not afraid that they wont be able to give him the chemo drug that causes the neuropathy and fear that now the chemo will not be affective. We will find all that out on Monday. It seems everything just keeps getting worse for him. 

Steelkiwi686's picture
Steelkiwi686
Posts: 36
Joined: May 2019

My only advise I can offer is buckle down, and try to keep the fear at bay. You and he should try to focus and keep your head Once the shock wears off a bit The oxy is tough but I was lucky enough that I tolerated14 rounds with it before I had to stop and I believe it helped me personally tremendously.  Even if he can’t be on it , the 5fu etc plan can be very effective. Try to be as mentally strong as you can and get ready to expect the unexpected. If each incident is treated as one obstacle to overcome then I found it was more manageable for me over this past 14 months   

I pray he can tolerate it but as others have said it’s not fun but it can be doable when you get the right combo for his particular situation and of course the best doc you have available that you are comfortable with  

Big hugs to both of you . Keep your head up   

bridget

stage 4 and declared NED yesterday :) 

 

wifetojeff69
Posts: 27
Joined: Aug 2019

We had his oncology appointment today and disucussed the next steps with the chemo and what is currently going on with his new neuropathy issues he is having. She wants to start with the 5fu only  until the neurologist figures out what is going on with his nerves and to see if he should even use the ox or not.She said that if they decide later he can use it then he can always start later he'll just have chemo longer.  Now he is very stressed thinks that is isn't going to tbe as effective and is certain he will get cancer again. He is feeling so discouraged and defeated because all of this is happening to him, first cancer now a nerve issue. I'm trying to support him but he is just so angry at all of this and I know that all of these emotions are normal but it's hard to see him going through this.

Annabelle41415's picture
Annabelle41415
Posts: 6149
Joined: Feb 2009

It's going to be a roller coaster of emotions along with appointments and decisions.  It's going to be hard to decide on what to do and weighing all the options.  It's a good thing that you have many doctors involved in your husband's case so he has more opinions.  It's hard to stay positive in a time like this, but you have to make sure that you can trust your doctors.  If you do, then get their opinion, but also make sure you ask lots of questions.

I'm glad that you are proactive in your husband's care and it's good that you go with him him to appointments.  Better 4 ears than 2.

I'm hoping that he can find some answers to his nerve issues.

Kim

grammadebbie's picture
grammadebbie
Posts: 429
Joined: Jun 2009

Cancer instills fear in everyone.  I was petrified all thru this journey yet continued by taking 1 day at a time.  I was diagnosed with Stage IIIC colon cancer in 2007 and after emergency surgery was given a 50/50 chance of surviving 1 year.  I completed 11 of 12 Folfox treatments over 9 months. (Thru much prayer and family encouragement).  My nausea was horrific..my pain management doctor suggested Marijuana as a means to deal with nausea and keep my appetite up. (I lived in California which was one of the few states at the time that permitted medical marijuana).  For me marijuana was the only way to control the nausea.  I had all the nausea drugs on board and they did not control it.  It was a hard decision back then wheather I should use it.  I completed my chemo regimin except for the last of 12 due to a allergic reation.  I am a miracle and have been NED for all these years.  It was very difficult to say the least but it was worth it.  Yes, I am different than before cancer ( chemo brain, neuropathy etc) but I am here and able to enjoymy family as the NEW ME continues on.  Will keep you in my prayers.  And hello to all my old friends from 2007 

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