Follow up Question

cmai

Hi All,

 

to Brief my huband history:  he has stage 4 adenoid cystic carcinoma in left max spread to base of skull (T4N1X0).  He was scheduled for 3 rounds of cisplatin and 35 rad treatments.  He will have 3rd round of cisplatin tomorrow, 6 rad treatments left (however his radonc may give more depending on the scan result we did this past weekend). We live in VA and currently our doctor is at MSKCC.  I was wondering what is your input regarding follow up after treatment.

Should I find local medical oncologist in VA area and do pet/mri in VA... then follow up with radonc in NY ?  She's supposed to be one of the top in the country.   Another option is driving up to NY for Scan and see our doc.. but their cheduling system seems complicated to make a "one trip" deal for all appts.

 

Any option or experience in term of follow up care?

 

Thank You

 

kathy

 

----

 

Just came back from med onc appt, they canceled his 3rd cisplatin.  Tumor now spreads to mult bone sites and liver...:(((((  I can't stop crying...  We have to find a clinical trial for him...

Kat

 

Ladylacy

Your Husband

So sorry to hear about your husband.  Believe me I know how hard it is.  I would research medical facilities near where you live especially if the trip to NY becomes too hard on your husband.  His doctors in NY could also refer you to someone closer to where you live.  I was raised and lived in Arlington for many years and while I haven't lived in VA in years, I know there are good hospitals there.  My sister is a 12 year survivor of triple negative breast cancer and her doctors were all in the Arlington and Alexandria area. 

Bone cancer is hard.  My husband's cancer has progressed from laryngeal to esophagus to lungs and is probably in his bones now due to the pain he has all over.  He is on hospice and his time is very near now.  His will and strength have really been something.  I know I could never go thru what he has gone thru in the last 5 years. 

Wishing you and your husband peace and comfort.  Be sure to take care of yourself too, because you are important too.

Sharon

cmai

Ladylacy said:

Your Husband

So sorry to hear about your husband.  Believe me I know how hard it is.  I would research medical facilities near where you live especially if the trip to NY becomes too hard on your husband.  His doctors in NY could also refer you to someone closer to where you live.  I was raised and lived in Arlington for many years and while I haven't lived in VA in years, I know there are good hospitals there.  My sister is a 12 year survivor of triple negative breast cancer and her doctors were all in the Arlington and Alexandria area. 

Bone cancer is hard.  My husband's cancer has progressed from laryngeal to esophagus to lungs and is probably in his bones now due to the pain he has all over.  He is on hospice and his time is very near now.  His will and strength have really been something.  I know I could never go thru what he has gone thru in the last 5 years. 

Wishing you and your husband peace and comfort.  Be sure to take care of yourself too, because you are important too.

Sharon

God Bless

Sharon,

 

I'm so sorry to hear your situation as well.  It's not easy for me, for you, or for us all  I'm searching...  It's hard, I hate to see him suffer AND the impacts this might have for our young kids L( 

 

ThankYyou so much for sharing your experience and pain....

 

Truly!

 

Kathy

 

MrsBD

Questions

Kathy, There are many promising new treatments. I would go to the center that offers you a trial. It's possible that some of the regular tests could be done at a nearby facility. Do you have family, friends, coworkers,  and a church that can help you with driving, child care, and such? The social worker at your cancer center can help with rides and maybe even finances. He or she is also a good source for information on how to explain things to your children. I'm so sorry your world has been turned upside-down. I will pray that you be given physical,  emotional, and spiritual strength.                                                                                  Beth

 

cmai

MrsBD said:

Questions

Kathy, There are many promising new treatments. I would go to the center that offers you a trial. It's possible that some of the regular tests could be done at a nearby facility. Do you have family, friends, coworkers,  and a church that can help you with driving, child care, and such? The social worker at your cancer center can help with rides and maybe even finances. He or she is also a good source for information on how to explain things to your children. I'm so sorry your world has been turned upside-down. I will pray that you be given physical,  emotional, and spiritual strength.                                                                                  Beth

 

MedOnc Friday

I still haven't heard a thing from RadOncologist at MSKCC regarding continuation of current rad tx to his primiary tumor.  So, we decided to cancel his 30th tx appt tomorrow and drivd home.  At this time, I wish to squeeze and hug my kids so badly!!!!!  I want to hear them scream, yell, and fight .. the typical things they do that will get on my nerve...  i miss them, i realize it's the comfort I have left to be strong for my husband....

We have appt with Dr. Kang at Hopkins on Friday.  They are the one who referred us to MSKCC for proton therapy in the first place.  Now, we re heading back......... for possible clinical trials with TPK-inhibitor & anti PDL-1....  I have no idea what they are.. but at this time... We will try anything... and being closer to home .....

I was expecting a good new.. scan look good..finish your 35th tx and go honme guys!!!  This is the least I've expected... (

Thanks so much for your support....  I tried not to cry to affect my husband.

 

Kathy