My husband is de novo newly diagnosed with metastatic pc to lymph and bones. He was on firmagon for a month (psa went from 112 to 31) and shifted to lupron last week. He is 56 and in good health other than the pc
A few questions
We are having the first docetaxal treatment soon. It is scheduled for 6:30 in the evening for this Friday. We would find it less stressful if we didn’t have to wait all day. We will need to come back home the next day 8-9 hr drive depending on traffic and I don’t want to be exhausted dealing with driving. I am also concerned that if he has a bad reaction to the medicine, I would be dealing with it when I am sleep deprived and less able think clearly. Also Friday night at the er may be kind of scary. If we have to wait 4 or 5 days to get an earlier appt, are we risking very much?
Also the second appt is scheduled for 27 days after the Friday appt. How important is it to maintain the three week schedule?
How important is it to get the chemo where your doctor is? And how hard would it be to be set up somewhere else for it? Would we have to wait for a lot longer?
Feeling like we are a widget on a conveyor belt at mdanderson
Thanks.
Written by
longleaf
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I am sure MD Anderson will do everything correctly. I go there for my scans and treatment plan - I also had my prostate removed there last summer. (I went through chemo locally.)
MD Anderson is among the best hospitals for PCa. That said, they are incredibly popular and it can feel like a ‘factory’. I’ve had scans at 7:30 at night - I did not know any hospital worked shifts that late - but they do.
The questions you are asking are best answered by your Medical Oncologist. Is your husband planning to go back on Saturday to get a blood test and to get a shot of Neulasta? That’s what I had - it’s to help ward off infection because chemo lowers your white blood cell count. They now have a device that they attach to your arm that dispenses 24-hours later. So they may be planning to do that.
Anyway, MD Anderson delivers top notch care. Just reach your to the MO and ask these questions. They are very basic concerns and I would insist they address them.
Good luck on the journey! And feel free to keep reaching out to our group - including if you have questions about what chemo is like and what to do to prepare for it.
Ask questions about the premeds and postmeds too so you have a better idea of what to expect. So many don't ask questions that many DRs assume they don't want to know but are very forthcoming once the right questions are asked.
I have known several patients who have consulted with an MO at a regional center but got their infusions locally. Talk to your MO - most are OK with prescribing treatment to a local guy. Your husband has probably already started on hormone therapy which should stop progression for the time being, so some minor delays in scheduling chemo should not make a difference.
Agreed with Tall A. Speak with your oncologist about options. Plus you should have a cancer treatment specialist walk you through expectations and resources especially if you are not local.
Where do you find a treatment specialist? Our only experience with chemo has been helping some very sick relatives afterwards but the had brain and lung cancer and were very sick already. We read some of the tips to prepare but more information about what to expect is helpful.
The hospital and or someone that works with your oncologist should be available to you for guidance. My treatment was through Texas Oncology and we were given a binder with q and a phone numbers, and expectations from the treatment. I cannot imagine MD Anderson not having this available for you.
I am sure there are resources at MD Anderson but we are learning the system from a distance relying mostly on email while working (because god knows what we would do with out insurance right now) and taking care of our children who have some of their own needs for medical care. I am hopeful that we can learn to navigate the system. I am hopeful that we are in a good place for his treatment. We were not given a folder on treatment expectations and all the doctor discussed was a few potential side effects, told us to let her know if he developed neuropathy, and to go to the emergency room if he developed a fever. We did ask about icing to prevent neuropathy and were told no studies back that up so it would be up to us if we wanted to do that. Our appt with the mo was clearly the last one scheduled for the day and occurred after5 so it may not have been conducive for discussion. We are working on timing of appts and hope that will help us feel like we have time to ask questions in person. I find this site helpful because people suggest things that I didn’t know to ask. Thank you.
You will find lots of posts about chemo and expectations on this site. I finished my six rounds in March and I had no problem with the day of the infusion or even the following day. Day three, another story. You feel like you have the flu without the fever. Each round has a greater hangover effect, so enjoy the first two or three.
We did find in the paperwork a care coordinator and he was very responsive and answered a lot of questions. We will probably shift to local chemo after the 2nd treatment but maintain the md Anderson doctor. Thank you everyone who responded. We will learn to navigate this eventually 😃.
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