2nd Ones a charm...and the value of this Forum

[chixter]

Going back a few weeks when we were first hit with this Dx, we were shell shocked, uninformed, ignorant of this disease and proceeded with our 'assigned' Onc from the hospital. But old Chixter had a gut feeling even in my ignorance, that this guy was probably looking at his first patient under 50 maybe even 60. Something about his approach was off. FF to today we consulted with an Onc who was strongly endorsed by a friend (veteran crc survivor) who is older than me but claimed that he is on his game with new therapies, he specializes treatments to correct anemic conditions and he is very responsive. As icing on the cake his practice is very local to our home rather than over an hour away. After a few weeks on this board and obtaining information we were able to meet with this doctor with a prepared list of intelligent , specific questions. To my relief, he began addressing our questions before I even asked them! It was like I gave him our list and asked him to study it. All he had were Katies Dx records. As I have posted her anemia was a very big concern. She is wiped out almost all the time. So all of you who responded to my Anemia post, especially Voxx, CRguy, Arizonamom, thank you for the information on Iron, ferritin levels, etc. He wants to begin iron infusions with hydration next week, he has ordered new labs, and after review he may throw an additional agent into the chemo mix, I forget the name it is an older agent used to treat malaria with...I have to look it up. There is a trial going on now with it at NJCI with good success and he is going to consult with those folks upon getting her new labs. I (as well as Katie) just have a better gut feeling about this guy. He wants a new scan after her 4th or fifth round...the other guy wanted to wait until all 12 were completed. Anyway, the proof will be how she will be feeling in a few weeks after addressing this anemia. Once again thanks to all for your input, learning from others is priceless.

[arizona mom]

I am so glad you found a doctor you as comfortable with! Hopefully those iron infusions will give Katie new energy. I hope your new doctor was able to give you hope and encouragement.

Is Kate taking anything for anxiety or depression? My doctors had no problem setting me up with Ativan when I asked and I have decided that staying on a low dose is probably worth it to preserve my sanity.

One other thought...a 25 year old girl might have a hard time initially talking about rectal bleeding or heavy periods, especially with her dad around. She may be totally fine with it, but you might want to have little talk with and make sure she is comfortable bringing that kind of stuff up with her doctor.

I'm continuing to keep Katie and your whole family in my thoughts. So good to hear positive updates from you!

Lara

[Val*pal]

I am so happy for both you and Katie that you have found a doctor who seems on top of things. Sometimes you just get that gut feeling that a particular doctor "gets" it.

That's ridiculous that the other doc only wanted to do scans at the end of the 12 chemo treatment. My husband was always scanned about mid-point in each of the three 12 treatments he underwent. I know with his last round, they scanned him sooner since the chemo was taking a horrendous toll. It's important to scan at an interval so that if any adjustments need to be made, they can be done with less waste of time.

I am also happy to hear that the new doctor is immediately planning to do something about Katie's anemia. Hopefully, she will begin to get some of her energy back.

I will keep you both in my thoughts and prayers.

[ColOrPan]

I am glad you found an oncologist you have more confidence in, after all you are trusting him with your daughter's life. I can't believe he wanted to wait for all 12 treatments to be done to see if it was working. You need somebody like this who is going to try to dig new and promissing stuff up, not just go through the montions. Good luck to your daughter.

[lauragb]

This is great news! Now you are getting somewhere. This oncologist sounds like he will work with you to get good results with a lot of tools in his repertoire.

[raym]

Good that you have found a good treatment path! I'm curious, how is the anemia being treated?

[Voxx66]

Great news - getting that anemia under control is the first big step in getting the whole situation under control. As for the malaria treatment - quinine?

[Bev G]

Hi Chixter,

What good and hopeful news finally! Getting that anemia under control is such an essential first step. I sort of hate to bring this up now, as there are so many things going on, and many things getting underway, but I just want to throw this out there: many women in the Colontown Women's Group (Facebook) have mentioned how they wished that someone had brought up fertility issues with them before they underwent some of the treatment they did. This may be the farthest thing from Katie's thoughts right now, but might be something she wants to ask her onc about.

Sending all best wishes to you both, of course.

Bev

[Rob in PA]

Glad to hear our CRC family helped you get some answers Chixter. Best to you and Katie.

It is kinda odd that you found a good doc in your back yard and were initially travelling farther to see the "crappy" doc! Usually it is the other way around .

Rob

[NWgirl]

Good job - always trust your gut!

[CRguy]

Sounds like a lotta positive energy coming together for Katie right now, and very glad we were able to help out a bit.

Sending MEGA POSI++++++Vibes for moving ahead on the Journey
Best wishes
CRguy

[chixter]

Ya man, good things coming out of here, bless you all! Voxx the chemo 'on trial' now is Hydroxychloroquine
This trial: http://clinicaltrials.gov/ct2/show/NCT01006369
These researchers: http://www.cinj.org/PressReleases/MossClinicalTrial (Thanks Maia for links). I guess by the name it's quinine based? I'll read up on it after work. This new doc is also putting together an order for tissue testing for genetics...immunotherapy further down the line. @ Raym We are starting with Iron infusions with hydration. In his opinion the Procretin Onc #1 prescribed was next to useless. He explained that red cell has 'ingredients" iron, B12, D3, etc. and Procretin was the hormone (oven) that bakes these ingredients into the RBC cake. (charming) one needs the ingredients for the procretin to work. @Bev Kate gave thought to fertility issues such as egg storage etc. Being blindsided as we were, there was 1. little time to get this done 2. cost prohibitive from my initial inquiry. @Lara, Kate is in the medical field, she is pretty free about discussing matters in the medical context, even when her padre is around. Thanx for your prayers as you will be in ours for your procedure next week. Thanks to all, I'll keep you updated on progress.

[elise]

I'm so happy you found someone you both like

Elise

[justin case]

My wife takes Methatrexate,(spelling) which is an anti malaria drug used in some chemo protocols. She has rheumatoid arthritis, caused by an overactive immune system. Oh, and don't be surprised if the iron infusion, is a brown color. All my infusions were clear, except this one.
Regards,
Michael

[juliej]

But old Chixter had a gut feeling even in my ignorance, that this guy was probably looking at his first patient under 50 maybe even 60.

Yeah, the problem is getting them to recognize the disease in younger people. I was told by a gastroenterologist and the doc who did my colonoscopy that I simply could not have CRC because 1) I was too young, and 2) I was too healthy and didn't have the classic symptoms. It's insane that docs think of it as just an older person's disease. I'm glad you finally found an onc you like. It makes sense to scan again after the fourth or fifth round. I think you're in much better hands now.