Things I wish our onco would have explained better or up front

[okie57]

Do you have a tidbit that you have learned during your journey that you wish you knew earlier or that would have been explained better to you? Here are a few from our journey. If you think I have it wrong or have misunderstand, please let me know, so I can get smarter. Also, I would like to know if what I think I know is standard or related to my onco. The devil is in the details. Please add your own tidbits.

1. Partial response means that your tumors have decreased in size overall from 1% to 30%. Stable means that your tumors are the same size or haven't grown more than 20% overall, failure means that your tumors have gotten bigger by 20%. I don't know if there are more divisions and what they are called. Is full response 31% to 100% decrease?

2. Progressing means that your existing disease sites have gotten bigger by > 20% OR you have new tumors/nodules that weren't there since your last scan, even if the rest of your disease sites look stable.

3. When your onco is trying to determine if you have failed your current chemo, the 20% is in relationship to the first scan on that chemo line.

4. If CEA level is applicable to you, then your onco will use it and the up or down as a trend and as a general indication for timing of scans. So, our onco generally will do a CT scan between 4 and 6 chemo treatments. If CEA stable or going up, then scan at 4 tx. If CEA going down, scan at 6 tx.

5. Allergic reaction to Oxi is "common." DH has a small reaction (hot scalp, kind of itchy for 5 minutes) on 7th tx, but he didn't know that was what it was and didn't tell the infusion staff or onco. Then he had a bad reaction on the 8th tx as soon as the Oxi bag was hung. Wish he would have been able to recognize the first symptoms.

[jhocno197]

6. The steroids given with the chemo can cause diabetes - it did for my husband

7. Not all chemo side effects are temporary.

[Green Tea]

I may have a few tidbits to add, but I think I'll do that later on. Right now, I would like to talk about the Informed Consent for Chemotherapy, which is supposed to be where all important details are presented in writing and all important questions answered before the onset of chemo

Below is a link to a Chemotherapy Consent Use and Discussion Guide template from the U.S. organization ASCO. If you read through this template, you will see the sorts of things that the doctor is supposed to address when discussing the upcoming chemotherapy with the patient. Keep in mind that this is only a template, and that the hospital should expand it where necessary to include information that is particularly relevant to the chemo regimens actually given in this particular case.

For example, in this template, there is a proposed list of Risks/Side-Effects that could be expected to occur, but this list needs to be extended if the treatment contains some agents with unique side effects, such as is the case with Capecitabine (Hand-Foot Syndrome), Oxaliplatin (peripheral neuropathy), Avastin (excessive bleeding and risk of hemorrhage), etc.

You can have a look at the form and compare it with what your oncologist discussed with you before your treatment began, and and you can note any differences.

http://instituteforquality.org/sites/instituteforquality.org/files/chemotherapy_consent_discussion_guide.doc

[wwroam]

"chemo" doesn"t cause diabetes.
Dexmethasone may. 18% of former patents will be diabetics.
12 cycles of chemo will reduce your kidney function by 20%.