How do you handle advice with bad news attached?

Ruthmomto4

Everyone seems to have to add their two cents to everything you tell them, and of course they all have someone who had someone etc. then they hit you with the but he died or didn't work. It's so disheartening and scares the hell out of me. When I told a friend we were hoping to start Xeloda she said well I hope it works for you and your husband can stomach it. Her husband has blood cancer, so I asked why, I shouldn't have. She said it made her husband horribly stomach sick and it won't get rid of my husbands tumors only keep them from growing more.  Why would she say that? I thought our goal was to get rid of them not just maintain, now I am thinking we need to talk to the oncologist about another drug.

My brother in law told my husband about how his friend had colon cancer and how sick the chemo made him and how hard he fought. I stupidly asked how is he doing now and the idiot said , oh he died. Why would you tell us this?!? I was so angry with him.

So how do you guys handle this or are we just around idiots alone? Lol  

Trubrit

The truth is the truth

no matter how hard it is to hear. 

They can't say 'Oh, he's alive and living in the Bahamas", that would be a lie.

What they could say, possiby, is something like 'Well, my .... didn't make it, but I'm sure your husband will do well'.  It takes the edge off of bad news, a bit. 

How do I react when someone says 'Oh, they died!' I offer my deepest sympaties and tell them that its a good job I intend to beat it. 

As for the chemo cocktail. For some it works, for others it doesn't. Just because your friend's Xeloda didn't work, or caused terrible pain, doesn't mean that is what will happen to your husband. Its all very scary, but in the end, decisions have to be made, and time is often of the essence. 

I wish you both the best as you move forward. 

Tru

lhduffer

We are all different

I always tried not to put too much thought into what they told me.  First, it is normally someone who "knew someone".  Many times it is not even a close friend or family member.  Unfortunately human nature makes everyone want to put their two cents in.  Also, unfortunately, many people really do not think about what they are saying to those of us who are traveling this journey.  That's why this forum is such a blessing to all of us and to the caregivers.  You are getting real experiences and real inspiration.

As for xeloda, I am a big fan.  I did 4 rounds of capeox (capecitabine/xeloda and oxaliplatin) and then daily xeloda with my 25 treatments of radiation.  For me it worked very well.  Upon my CT after the treatments I showed a complete clinical response.

Keep the faith and believe.  I now it is hard but try not to let others comments bring you down.  Wishing you and your husband all the best.

Tunadog

No problems with Xeloda for me..

No problems with Xeloda for me. I take 3500mg daily with food for two weeks after my Avastin infusion.

It fatigues me but no stomach problems.

I had a recurrence with my CEA up to 9.8 and started Xeloda and Avastin maintenance Chemotherap. My CEA has been going down 8.2, 7.8, 7.6, 7.2 and last week 4.6 and I'm very pleased.

So it's working for me with minimal side effects.

Best of Luck to you and yours.

Ruthmomto4

Thank you!

i kind of tried not put too much into the Xeloda story because he does not have the same cancer, or at least that's how I made myself go through it.

the other story I just sat there thinking why the hell tell us that? What benefit does serve us or you to tell us that? I guess people don't think before they open their mouths. 

tanstaafl

Well,

Well, at a certain level, I the caregiver prefer to know the various flavors of bad news ahead of time, and compare realities.  I would rather know sooner than later, and know what to look out for.   I don't count on this from the doctors.  

If I don't like the odds or the outcome, I look for people that have serious claim to changing them. Knowing bad outcomes gives me a chance to prepare for a battle that may come my way.

As for xeloda, recent studies suggest that shorter intense  treatment is okay for curative resections of some kinds of CRC patients. There are number of things you can do to improve xeloda's performance and reduce its side effects that are not common medical advice.

1.  Folic acid, the old, inferior, common supplement form of vitamin B9, at any level adds toxicity without benefit.  This includes "fortified foods" like enriched flour and bread, and many multivitamins with older formulations.  The natural form of folate, L5MTHF, protects healthy cells without compromising chemo effects. Leucovin another synthetic B9  is about a wash for xeloda, no net benefit above RDA.  

2. Patients that have IV vitamin C often have fewer side effects from chemo, and in combination with other specific vitamins, may actually improve cancer kill.  This is clearly the case for my wife.

3.  Patients that have specialized nutrients often have fewer side effects and better treatment results for radiation, surgery, chemo.  Even 500 mg - 1000 mg of glutamine have been helpful for us with gastric or mucosal injuries, including my wife's oral chemo.

4. Mild drugs like cimetidine and/or celecoxib (Celebrex) are helpful against some common kinds of deadly CRC cells.

5. Expanded blood testing, more frequently has given us earlier warnings and helpful hints for dealing with metastatic CRC.

 

NHMike

There are people on

There are people on maintenance chemo. They are not elegible for surgery because it would be fairly dangerous so they are on drugs which prevent the tumor from growing. I have a coworker with lung cancer and he is taking a targeted treatment. The treatment shrunk the tumor by 50% but it's stable now so he may have to keep taking the drug until a cure can be found [surgical or other drug].

On chemo and cancer in general: I asked my oncology nurse as to whether or not people worked through it and she said that the vast majority of people work through it. They have side effects but manage through it. I have had GI issues for sure. Certainly constipation. I am taking Calcium and Vitamin D3 though not in huge amounts. I've used MiraLax to help with the consitpation and I find that a lot of walking helps the GI issues and even the tiredness issues. There may be some good natural drugs that the body generates through walking.

A lot of people feel pretty awkward around people that are sick and say odd things and sometimes we, the sick, need to comfort them or inform them. My mother and three sisters came to visit this weekend and I spent an hour going over what I had, what I had done, prognosis, advances in treatment, and the course of treatment for the future. I think that I put them at relative ease and decreased their concerns and worries. I said that this stuff is all hard stuff but that there's a path to a good outcome, though no guarantees.

 

 

BRHMichigan

Forgiving ignorant people

Dear RuthMom4,

I am so sorry people have said such discouraging things to you!  Please just try to forgive them or think if an apprpriate comeback. I am not confrontational at all, but people should be called out when being so insensitive.

I am so impressed that your husband has fought this battle with so little 'conventional' treatment. I felt much pressure from family to do chemo and radiation.  I will have surgery in a month.  I refuse to get a port.  That's just not for me.  Anyway, I am super encouraged that your husband is doing so well years after diagnosis.  You have so much to be thankful for.  And you must be an excellent helper/caregiver.

Have a wonderful day.  -- Beth

JanJan63

People love to share bad news

People love to share bad news. I remember being pregnant with my daughter and towards the end it seemed like everyone had a pregnancy or childbirth horror story. Plus, as mentioned, she was telling the truth. And it certainly doesn't mean it will be the same for anyone else. I'm on a chemo that I tried before in February and its much easier for me this time when it was horrible and I couldn't stay on it in February so it can even be different for the same person each time.

I'm sorry that it made you worry. It must be so hard to be a caregiver, I give you all so much credit. Everyone has their own reaction to things and his chemo couldeven be different even with the same name because of his different cancer. I was on that one and had some nausea but it was manageable.

Good luck!

Jan

ron50

some times even your doctor does it.

      Following my surgery for stage 3 c colon cancer into 6 nodes my surgeon came in and had a heart to heart with me. He said that he had been dealing with cancer for a long time and he had rarely seen a tumour so aggressive. He told me if I had a bucket list , do it now because he said it will get you , too many lymph nodes and way too aggressive. I asked how long . He said three years maximum.  Next jan22nd I will end year 20 of survival still ca free. I had 48 sessions of chemo over a year. Not a fun year but you do what you think is right and have no regrets. A speedy recovery to your hubby, Ron.

JanJan63

ron50 said:

some times even your doctor does it.

      Following my surgery for stage 3 c colon cancer into 6 nodes my surgeon came in and had a heart to heart with me. He said that he had been dealing with cancer for a long time and he had rarely seen a tumour so aggressive. He told me if I had a bucket list , do it now because he said it will get you , too many lymph nodes and way too aggressive. I asked how long . He said three years maximum.  Next jan22nd I will end year 20 of survival still ca free. I had 48 sessions of chemo over a year. Not a fun year but you do what you think is right and have no regrets. A speedy recovery to your hubby, Ron.

I think you are one of the

I think you are one of the toughest people on here Ron! Many more years and I hope they're happy and you enjoy life as much as possible. 

Jan

Ruthmomto4

Wouldn't it be nice

if people just wished someone well and that was it? I can dream I guess