Bump.
We go to Cleveland Clinic on Monday for a 2nd before chemo.
What should I be asking? Planning on asking to be moved up to Cleveland Clinic for all care but what else?
1. The main cancer building down there is truly impressive, hard to describe the inherent efficiency, patient centered design, subtle features to make up a really phenomenal center. They went hard after making a damn near perfect center for the size of program they have there
2. There should be high degree of alignment between the recommended regimens, without too much info- I suspect the letters ABVD have been thrown about but it may be different pending subtype. In any case, I wouldn’t think the starting plan should vary much, if it does- I’d generally go with them
3. Pending on where you live, they may be able to accommodate the plan more local to you but still leveraging main campus expertise, generally works well and that team is great with communication, on the other hand if you are close to downtown you are in great shape there
4. If things like long term toxicity, fertility questions, risks for secondary malignancies haven’t come up or been addressed they really should as the patient here is young and these are huge parts of how quality management of this particular disease is measured....long term risks for cardiac, pulmonary and hematologic issues should be addressed because the value of the expertise is really understanding the nuance and guide toward the optimization of outcome on all levels, I like the clinic in this particular space because they have a mature set of support programs for these issues like cardio oncology and survivorship
5. Not only should the regimens of treatment be the same, there should be similar notes about supportive medicines and very importantantly timing of follow up PET scans, again I like the clinic here as well, as the follow up studies are often pivotal in management decisions so whoever reads them has to be experienced
6. Hopefully you get no grief from the person who saw you initially, often I’ll hear from people, they did the same thing anyway- that ultimately may be true, but it’s like boating on Erie, doesn’t take much to be out there in a 3 mile an hour southern wind but they are prepared and experienced to get through the off hand chance the wind flips to 10-12 out of the north east.....
7. While you never know and cannot guarantee an individuals experience- that team in Cleveland is generally bright, communicate well, thoughtful and focused.....they also are dedicated specialists that only focus on lymphoma and will run cases by each other as well- again , huge benefit, I run stuff by them fairly frequently
Best of Luck, Prayers up