Stage 4 Need encouragement

Terri065 said:

Just found out it's grade

Just found out it's grade IV/IV. So I guess 4.

Hi Terri065,

I think it would be likely that your husband will have scans every 3 months. I don't know the exact protocol, but I think with a Stage 4, Grade 4 tumor they will want to watch it closely. 

Also, perhaps you could ask the oncologist what other tests (if any) are warranted for this diagnosis. I know some oncologists or urologists order bone scans as a test. My husband (with a Stage 3 diagnosis) had a bone scan after his nephrectomy. I recommend asking for one, if only for some peace of mind. 

It's such a scary, scary job to deal with your husband having cancer. It is a roller coaster ride, for sure, I hope you are taking care of yourself too! Take care. 

Terri065 said:

Melissa

P.S. Our daughter is named Melissa after the Allman Brothers song.

 

Hi Terri,

I am glad that you have found this forum. There is a wealth of information amongst all our members. And there are a lot of wonderful caregivers on this site who will (and already have) give you guidance on this.

Your support you give your husband will help him through this!

Hugs

Jojo

Terri065 said:

Thank you, it is encouraging.

Thank you, it is encouraging. My husband retired from the fire department in October and was diagnosed in November. While am grateful he doesn't have to go back to work. My anxiety is getting the better of me. I just want him to be able to ride his motorcycle and go camping. We also have two daughters. One of which was married in 2013. I just want to stay on top of this so we can enjoy our grandchildren some day. 

                                           Thank you,  Theresa

If I recall correctly, your husband went to Dr. Russoa at MSKCC?  Coincidentally, I am a volunteer firefighter, and Dr. Russo handled my surgery.   There are a couple of other firefighters on  here.  There's a firedude, and at least a couple of others.  Congratultions on getting through the surgery, and I hope you and your husband enjoy retirement.

icemantoo said:

The force

May the force be with you.

 

Icemantoo

Terri,

     I was diagnosed Stage 4 in October 2011. I have head right kidney removed, and in 2013 lower portion of right lung removed, and another tumor removed from the brain.  I have now been NED for 15 months.   Have faith and courage and try to suppress the fear as much as possible! It can be ok!

                                        Prayers for good health!

                                        Brenda

Stage 4 Grade 4 here. Diagnosed May 2013. Had bones and lungs scanned. No mets in the bones. Left kidney and adrenogland and large amount of vein removed. IL2 treatment August - November. On sutent since september 2014.

Aint dead yet! 

Not planning on dying tomorrow

Not really planning on dying at all

Hi Terri, I know you are afraid.  Just try to get copies of all reports, blood reports, scans, etc. Keep them in a file.  There doesn't seem to be any spread to lymph nodes or other mets at this time. The best thing to have done now is to ask for a full body pet/ct scan.  I say sooner than later.  This way you can catch anything that can be around now, and if nothing, which is hopefully the case, then going forward full body pet/ct scans every three months would be the right thing to do. I think you said he has been at Sloans, they are usually on top of it all!  Keep on the boards here and continue to post updates.  Don't worry too much, take one day at a time and don't forget to take care of you! Hugs!  PS  my mom was stage 4, she went on Votrient and is now NED.  Hopefull still NED, scans in a month or so.  Praying for us all!

Terri065 said:

Thank you

Thank you everyone for your support, it is deeply appreciate. We go back to Sloan on 2/3/15 will keep you updated. 

God bless! 

I totally agree with everyone who recommends bone and lung scans. Best to do it early just in case. I'm so happy that so far all is going well and hope that it continues that way. Wishing you both the best. You're in really good hands at MSK and with Dr. Russo.

Terri065 said:

We are meeting the oncologist

We are meeting the oncologist Dr Voss for the first time on February 3nd. We're hoping he's as amazing as Dr Rosso. Also my husband had a bone scan and MRIs of the head, chest and abdomen. I'm hoping we covered all our bases.

Theresa

 

I'm sorry to hear you and your husband had to join this club.  The people on this site are very caring, helpful, and supportive.  I am also stage IV/grade IV and am going through consultations to treat mets in the lungs.  I met with Dr Voss @ MSK two weeks ago and have been in regular communication since.  He has been the most impressive doctor my wife and I have met thus far.  Intelligent, mindful of the patient, and thorough in his discussion.  He also persuaded us to see two other doctors:  Dr Walter Sadler @ U of Chicago and Dr David McDermott @ Beth Israel in Boston.  That says a lot about a doctor who can give such top notch referrals yet still keep up with the patient to further inform and guide.  You are in excellent hands.

There is a lot of anxiety associated with cancer, as others have pointed out.  I don't know of a secret to keep yourself worry-free but I have found that associating with loved ones more relieves a lot of the pressure.  Connecting with new people as well.  Just jumping into life more has helped put things in perspective.  I hope you find what works to pull up when you hit your lows (we all hit lows now and then).  Don't be a stranger!

Joe