should I send this letter to my husband's onc (or not)?

[jep]

So I spoke with my husband's oncologist yesterday regarding starting Lonsurf . . . One of my biggest questions was regarding combining Lonsurf + Avastin . . . I had read a bit about this combination on line, and since my husband never tried Avastin (due to a fistula), I thought it might be a possibility. His oncologist kind of pushed it aside and told me that Avastin is not usually given with Lonsurf. So, of course I did more reading and found some info from ASCO (2019) as well as info from NCBI (2017). Both suggest that this combination is associated with improved response. I wrote my husband's onc a short letter explaining my thoughts and citing those sources . . . Is this out of line? I know the onc is the expert and maybe I should just listen to what he says, but I just feel like I should be asking questions and advocating . . . am I overstepping here? Please let me know your thoughts . . .
Thanks everyone!!
jep

[GrouseMan]

Well - you seem, to be pretty well informed. Perhaps better than your husbands oncologist on the face of things. BUT he does have the medical degree and my experience has been that many of these guys have an attitude when someone questions their knowledge. Its also possible that the oncologist has other reasons for not using Avastin in combination with other chemotherapy. Some are biased as it raises BP, and can cause bleeding which might be a factor in your husbands case. I noticed your oncologist didn't use it in combination with Folfox or Irinotecan. Many have added it to those drugs to good effect now a days. My wife was pretty much on Avastin continuously regardless of other drugs for over three years. But my wife's was a rather advanced case of stage IV from the get go.

In my case - My wife's oncologist was somewhat receptive to research papers I brought to him to read. They don't always have time to keep up on things, and some are lacking in basic research knowledge. You see most of my career was as a drug discovery chemist in Oncology. I was not a doctor and I didn't have a PhD! But I was involved in researching a lot of Chemotherapy mechanisms and drugs. He found many papers I gave him very interesting. But in the end it was he and my wife's decisions on treatment. At one point she was on Erbitux, which is an EGFr inhibitor that is a monoclonal antibody. I would have preferred that he had put her on Dacomitinib (Vizimpro) instead which was a third generation EGFr inhibitor that was being used in Lung Cancer. But although it was a newer and based on knowledge I had (I was involved in its discovery and synthesis) better, the oncologist used Erbitux instead since it was approved for Colon Cancer, and although the same class of compound Dacomitinib had no clinical data yet in colon cancer where as it did in lung cancer. So its up to you.

If I where you I would broach the subject and determine what the oncologists concerns are. I probably wouldn't do it in a letter. But given the current situation with Covid-19 ?? Might be as simple as Insurance will not pay for the combination in which case you would like as not have to pay for that and possibly Lonsurf if the insurance company will not allow its use in that combination.

Good luck

GrouseMan

[jep]

Wow GrouseMan, so many great points in your response . . . I do worry about stepping on toes because I am obviously not a doctor and science was never my strong suit. My husband's doctor has gotten used to me (I think), and he seems to know that I'm just so incredibly desperate to help my husband get well that I can be a bit pushy (in a loving kind of way) . . . He knows that I read and research a lot, and he has even commented that he is impressed at how my husband and I are knowledgeable about his disease/treatment, etc. Normally, I wouldn't send him a letter, but given the current situation, I felt it was a good idea (maybe). I am not allowed to attend my husband's appointments, and I did just speak to his oncologist on the phone yesterday (phone conference during his appt). I just wasn't satisfied with his response the to Lonsurf + Avastin question, so rather than trying to get him on the phone again, I thought I would try the letter . . . I have written to other doctors in the past, and it seems to get a pretty quick response (surprisingly).

My husband had 1 dose of Avastin in 2017 but it was immediately stopped because of his fistula and issues that occurred . . . My thinking is, maybe this is the drug that can really make a difference . . . he's tried so many other drugs, but not Avastin . . . why not try it?

So, those are my thoughts, but I really appreciate your input . . . you clearly have a wealth of knowledge regarding these subjects . . . much more than I do . . . I'm just a desperate wife doing my best here

Thank you,
jep

[stu]

Some great points made . I think you can raise this under the pretext of the current climate and would welcome his views on it . Or a second opinion might let you hear another view point to consider .
Your a skilled advocate . I think you can navigate it .
He is very fortunate to have you on his team .
Stu

[polluxx]

I sent my oncologist 3 pages of questions through my portal. I made sure to write that I did not expect her to spend her weekend giving me answers in writing, but I would print them out and we could discuss at our next visit. I told her that I was just giving her a heads-up so she had time to prepare.

We had a productive conversation.

On each point, I made it clear that I’m not insisting, demanding, or even requesting a particular procedure or treatment. I just want to fully understand, so would she mind explaining why each one was or was not indicated.

She was very nice about it and told me that if she was in my position, I could bet she would be coming to appointments with 3 pages of questions as well.

So in your position, I would definitely ask, but I’d try to be clear that I just want clarification, not to take his place as the expert.

Good luck!

[jep]

Yes, great advice Pollux....thank you!!!
jep

[JJH]

Are these the studies you had in mind?

ASCO (2019)
https://ascopubs.org/doi/abs/10.1200/JCO.2019.37.4_suppl.637

NCBI (2017)
https://www.ncbi.nlm.nih.gov/pubmed/28760399

[jep]

Yes JJH, they are...