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Sometimes the Doc just has to listen....

thxmiker's picture
thxmiker
Posts: 1282
Joined: Oct 2010

So, I was at the Oncologists today. Doing the normal Chemo treatment.  See the nuurse, weigh in, BP, review the blood test, blah blah. The Onc comes in and asks if everything is going OK. I tell her that this chemo (Folfiri w/Avastin) makes me exceptionally nauseated. It makes me run to the bathroom and lose it for the next four days. On the plus, I get to eat a lot. lol  She laughs with me.  My next to last IV, I run to the bathroom, and lose it.  I come back and sit down, only to run a minute later, and do the same thing.

 

The Onc come over to me and asks, "Why did you not tell me this made you so nauseated?"  I replied, "I thought when I told you that it made me exceptionally nauseated, and I ran to the bathroom to lose it for four days after the last treatment, that I was fairly concise."  She paused, and told me, "I am sorry that I did not listen to you." She changed some meds and said nect time it will not be that bad, and to call if I am still having issues tomorrow.   She is a keeper for a doc.  It does not bother that a mistake was made, it bother me when they want to blame us for trusting them.

 

I have two more Chemo Treatments to go before surgery. I can not wait until this stage of the journey is over.  I have slowed down to 1-2 walks a day at 2-3 miles each.  Still loving the mountains, time with my wife, and dogs.

 

On the down side, My sister Carol just got diagnosed with colon cancer. She is 3 years older then me, and looks 15 years older. She will need our thoughts and prayers for the start of her journey.

 

Best Always, mike

hippiechicks
Posts: 509
Joined: Sep 2012

Oh Mike!! I am so sorry to hear about your sister!! I will add her to the prayer list and wish her all the best on her journey.  Surely she will do well with supports from experience!  I also have a family member diagnosed.  It is very helpful to have someone so close who understands and can help navigate.

So...it also sounds like the FOLFIRI will not be any easier to tollerate than the FOLFOX....uuuggghhh!!!

Glad to hear she did listen and will be adjusting those meds for you!

Best of luck with your remaining treatments and surgery, and I am glad to hear you were able to find the right doctor for you!

 

thxmiker's picture
thxmiker
Posts: 1282
Joined: Oct 2010

The side affects were worse for me with FOLFOX.  I still can not feel my toes.

 

The Nausea is really severe with FOLFIRI for me.  I use steel cut oats in my rice maker to make oatmeal poridge, and add a dash of maple.  My wife whom professes to hate oatmeal, now likes this mix also. (Sanyo and Panasonic make a very reasonable rice maker that does a grate job for around $100, or found on eBay for around $50.) My Onc liked the oatmeal, stating it is better then more chemicals.

 

Juicing when I feel depeleted, is a real help. (12 Carrots, a clove of garlic, and a stick of celery - Juicing for Life is a great read.)  I also make Peanut Butter, Oatmeal, honey cookies. (Alton Brown recipe)   Bananas are a must!

 

My surgery will be in San Diego at UCSD Moore's Cancer Institute, Andrew Lowey, MD, PhD, etc...  A 1/2 mile (1 Km) from the beach, a beautiful campus, and Lowey's team has incredible results. Most likely I will get HIPEC and surgery, a 14-18 hour procedure.  We have friends whom have offered a beach condo for us to use. I am blessed with many generous friends. We also may stay in Ventura for another of week to enjoy the beach and let me have additional recovery.

 

Carol, my sister is a School teacher in Houston. She teaches computer science in the hood and loves it!  She started a breakfast program, and a tutoring program at her school. She hates the politics, but loves teaching.  The Kids stole her car (with her husband's approval.), reupholstered and painted it in a week.  Like me she went to see the Doc for stomach pains, had a CT that showed a tumor.  She will have surgery in a month. 

 

Wolfen, I am sorry that you and your husband are having a difficult time. If only the Docs would listen. I completed my Paramedic in 1987, for my own knowledge and zero desire to work in the field. With this little knowledge it allowed me to question my Docs over the years. 

 

Best Always, mike

tommycat's picture
tommycat
Posts: 790
Joined: Aug 2011

Hi Mike,

I live in San Diego....please PM me if I can be of any help to you and your family.

Sorry about your sister :(

Tommycat

thxmiker's picture
thxmiker
Posts: 1282
Joined: Oct 2010

As soon as we know more I will contact you.  Either way would love to talk when we are in SD.  If you have not tried the Sushi Deli, it is a real treat.  we have tried the one in Downtown and one in La Holla. 

 

Best Always, mike

Chelsea71
Posts: 1170
Joined: Sep 2012

Sorry your sister is going through a bad time. Hope her surgery goes well. Maybe she caught it early. Hope it works out.

Chelsea

wolfen's picture
wolfen
Posts: 1322
Joined: Apr 2009

I'm so sorry to hear about your sister. Does she live near? Sometimes it just seems like too much, doesn't it.

I am glad that your onc realized and admitted that she had not been listening. So many doctors don't. My poor hubby would be much further along in treatment if only the first doctor had listened and read all the medical history I provided, and it would have saved 2 hospitalizations and a medical error created surgery if only someone had listened. This is so odd and was a "red flag", I know, but our first ENT visit was on Election Day. The very first words out of this ENT's mouth when we met for the first time were "We need to get this Muslim out of office." We were not there to discuss his political beliefs, so if his head was up his a$$ over the election, perhaps he should have closed for the day.

I'm sorry about your side effects. I know JBG had a really rough time with various chemos. I sure don't understand how some people can work through these treatments.

My hubby hasn't been able to eat properly for quite some time and now has a G-tube, but remains quite weak, despite sporadic nourishment. He's finished 7 of 10 lung rads. No big side effects yet, but I'm sure they'll come later. Home Health visits once a week. Still quite pleased with MD Anderson.

Where and when is your surgery?

My best to you , your lovely wife, and sister and family.

Luv,

Wolfen

johnnybegood's picture
johnnybegood
Posts: 1122
Joined: Oct 2008

we have never spoke before i am wolfens daughter.i have had alot of times when my onc did not listen,sometimes i feel i am the doc but not getting paid for the job.i am sorry about your sis maybe she can join our forum.i have fond childhood memories of the Arizona mountains near Flagstaff we spent alot of time up there.its great you are almost done with chemo just another step closer to surgery.good luck and nice to meet you....Godbless...johnnybegood

Sundanceh's picture
Sundanceh
Posts: 4408
Joined: Jun 2009

I'm sorry to hear about your sister...she'll have a great teacher in you to show her how things get done:)

Best of luck to both of you!

jen2012
Posts: 1607
Joined: Aug 2012

My husbands doc is like that too...not afraid to say she made a mistake or doesnt know something.

So sorry about your sister. Maybe we'll meet her here soon...but either way i will remember her in my prayers.

jen2012
Posts: 1607
Joined: Aug 2012

oops

annalexandria's picture
annalexandria
Posts: 2573
Joined: Oct 2011

i imagine you'll be able to be a great source of support for her.  Sounds like you'll have to make sure that any kids in the family get colonoscopies earlier than the norm.  My oncologist said mine should start in their 30s (my sister also had cancer but not colon...they still felt it should be checked early in the next generation).  I hope all goes well for her.  Hugs to you both~Ann Alexandria

PS Have you tried an anti-anxiety med for the nausea?  Only thing that worked for me (at the dosage of 2 mg 3x per day) when I had unbelievable nausea during FOLFOX.

tootsie1's picture
tootsie1
Posts: 5056
Joined: Feb 2008

Hey, Mike.

Sorry, you've been so nauseated, but I'm glad you have such a good doctor.

Really sorry about your sister.

 

*hugs*

Gail

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