Has others received treatment at MSK, how did they do

[Muffin2019]

I am being referred to MSK for a trial or treatment due to the treatment not working. Liver Mets had increased not decreased, getting a liver biopsy on Monday. The PSA had gone up instead of down, the trial is plivicto so we will see what happens. Since I am over 4 hours away and the only driver I will be taking the train. Do they make some allowances for people who live some distance away ? Does anybody have or have had experience having plivicto and traveling by train after the treatment ? Alot of gray areas and unknown for me, my roommate works so time off is limited. Another question is how was the first in person meeting with MSK ? I know a lot of questions but maybe would give me some peace of mind and encouragement. Thank you for any replies that is helpful.

[TylexGP]

I have been treated and continue to be treated at MSK. You can see my treatment s in my Bio but quick summary ADT+Abiraterone, HDR Brachytherapy and EBRT. I only had to go into NYC twice For HDR Brachytherapy and the simulation and set up for EBRT. All other appts at the West Harrison site. My experience has been very positive regarding meeting with RO, MO and Uro. Support staff from security at the door to the Techs, NPs and PAs has been awesome. I live in CT so it’s 1.5 to 2 hrs to West Harrison a little longer for NYC. Depending you maybe able get treatment at the NYC site and follow-up at a satellite site. I wish you well you will be in good hands at MSK.

[Muffin2019 in reply to TylexGP]

I live in central new York and Google maps say it is 4 hours to west Harrison site. You are much closer and 2 hour drive would be nothing for a single driver. I figured the Amtrak train would be less stress and better, especially after treatments.

[TylexGP in reply to Muffin2019]

I grew up in central NY. Coordinating the logistics for the train may be challenging but doable.

[Mjex in reply to Muffin2019]

I have the same situation and come down to mskcc on Amtrak. Most follow visits are video. Mskcc is tops in my book.

[Muffin2019 in reply to Mjex]

How many hours does it take to get there, I know they have stops along the way. If I get the clinical with pluvicto I would need special accodamations coming back home as I would be radioactive and wondering if they would do that? If you have to have blood work done I wonder if you can do it locally and not have to travel down there ? I expect scans would have to be done there and do I keep my team here where I live for hormone shots etc ? So many questions and unknowns but they are top rated in the country. Did you take Uber from the station and is there hotels close to the cancer center, the Harrison site. Thanks for your input.

[j-o-h-n]

Great Hospital (worth the 4 hours to and 4 hours home). I live in NYC so if you need more info just message me.

Old way. Take E train from Penn station (E Train to Queens, Not to Brooklyn - Take Brooklyn headed train on return trip). Get off at 53 street/Lexington avenue stop. Go to front of station (all the way) and take escalator up and follow the crowd to the "uptown 6 train" straight ahead (do not get out of subway) two stops to 68th street and Lexington Avenue (New York University stop). Follow most of the crowd up the stairs (not the NYU exit) and when you get up on the street, make a quick U turn onto 68 street and take the crosstown bus (about 30 feet ahead) to the last stop (approximately 4 or 5 blocks - slow in traffic). The Main MSKcc campus is right there on York avenue (68 street and York avenue).

If you are to visit your doctor at the Kimmel center get off the bus on 68 street and First avenue (one stop before the last stop). Cross First Avenue headed back from where the bus just pasted the Kimmel center (1/4 or a block).

Reverse yourself on the way back to Penn Station. However you have to take the 67 street bus (heading west) - just around the corner of the hospital. (This is the first stop on to bus).

Note on the reverse trip the 53 street stop is actually named 51 street, but it is the stop to transfer to the E train (towards Brooklyn) to Penn station. Again when you get off the train at 51 street you will have to walk (follow the crowd) to the back of the station and go down and up the stairs. (again follow most of the crowd and do not get out of the subway).

On the way to MSKcc buy a two trip metro card on the metro card machine. It will cost you $2.75 per trip ($5.50 Plus $1.00 for a "new card" for a total of $6.50). This card should be kept for the trips on the trains and the bus - since it's a free transfer between the subway and the bus and vice versa.

New Way: Train from Penn station to 42 Street and Lexington avenue??? Too new for me to know how to travel via subway.

Regards,

Good Luck, Good Health and Good Humor.

j-o-h-n Friday 03/31/2023 10:34 AM DST

[Muffin2019 in reply to j-o-h-n]

Thank you but never been in New York city and never taken the subway, how is the Uber service, know it is probably more expensive than in central New York. Looking for hotels near whatever the one that I have to go to, looks there is a mess of them.

[j-o-h-n in reply to Muffin2019]

FROM Penn station, 34 Street west side of Manhattan --- TO 68 Street and First Avenue/or York Avenue east side of Manhattan is terrible with all the traffic. Subway is actually faster since it's underground. I never took Uber so I can't tell you about the price. You can call them and get a quote. But tell them the above --- FROM and TO addresses.

Call the main MSKcc telephone number and ask to speak to the person who can tell you which nearby hotels you can use (discounted). Also Sloan is known for their cuisine (true) and ask if you can (open and closed times) have breakfast/lunch/dinner in their so called restaurant in the campus 68 street building. Much less than eating out (unless you want mcdonalds located one block away (north east corner of 69 street and first avenue). If we were related I would have you stay with us...... When you're in NYC you can call me for help or information. Send me a message for my home phone number.

Good Luck, Good Health and Good Humor.

j-o-h-n Friday 03/31/2023 3:11 PM DST

[Muffin2019 in reply to j-o-h-n]

Thank you, they called today for insurance information but when I called back it came up ad a non-working number there. I will call about the hotels and eating there sounds like a plan, not a fan of fast food plus still have the side effects of chemo for 6 months.

[j-o-h-n in reply to Muffin2019]

[phone] main number for msk.

Good Luck, Good Health and Good Humor.

j-o-h-n Friday 03/31/2023 6:08 PM DST

[Melzer2169]

my husband had his surgery in NYC MSK, follow ups are at one of the remote sites, they have several. Driving into the city was not terrible, easier than I thought and there is parking right there. They do have hotels they work with which are near and decent rates. I ultimately did not stay in a hotel but i'm sure they would be able to offer some suggestions.