I am so scared

27 Posts | Page(s): 1 2 3  Next 

I am so scared

by mg576 on Tue Feb 14, 2012 06:31 AM

Quote | Reply

My husband was diagnosed with rcc in November of 2009. He had his right kidney removed. Everything looked great until last week when they found tumors where the right kidney used to be, in his lungs and brain. They said it's not curable. They are starting radiation on the tumors in the brain tomorrow.

I am so scared. I have to keep a brave face for my husband,children and grandchildren.

What is going to happen??? 

RE: I am so scared

by Midmomom on Tue Feb 14, 2012 03:55 PM

Quote | Reply

I am so sorry, and understand your fear.  I notice you wrote this after midnight - when my husband's kidney cancer returned 5 years later in  his liver, I, too, was scared, but prayed and hoped it would be "fixed" with surgery.  I was even more scared when they discovered it in his lungs 3 months after the liver surgery.  Spent many nights awake, crying silently and praying.  But I did set my children down and tell them that the doctors could not "fix" Daddy's cancer now, but he would be starting a new medicine to hopefully stop it and maybe shrink it.  I imagine after your husband's radiation treatment for his brain mets, that he will be started on one of the targeted therapies.  Hang in there and find some close friends with whom you can share your feelings.  Learn all you can and don't give up.  {{hugs}}

RE: I am so scared

by lb-in-msp on Tue Feb 14, 2012 04:15 PM

Quote | Reply

I am so sad that you and Midmomom are having to go through this again.  I think it is especially difficult for those who have children and even more difficult for caregivers.  The doctors are right - once RCC starts to spread it is no longer considered to be 'curable' - but IT IS treatable.  Did you know that until about 2006 there were NO treatments for RCC?  Depending on an individual patient's response to these treatments, they can produce long periods of remission which then gives more time for yet more new treatments - and, as we all hope and pray - perhaps one day a cure. 

I know how awful this is - especially after a lovely period of being 'cured'.  My first recurrance was 5 years after my initial diagnosis and surgery. 

What's going to happen?  I wish there was an easy answer to that one.  For myself, I figure God's driving this bus now and I'm just the passenger.  I have no doubt it's going to be a rough ride sometimes - but - I'm no longer behind the wheel. 

My prayers are with all of you!

 

 

 

RE: I am so scared

by mg576 on Thu Feb 16, 2012 08:44 AM

Quote | Reply

Thank you, Midmomom. How are you and your family? I'm sorry you and your family are going thru this. {{hugs}} My children are grown. My grandchildren are 5 and under so I am struggling with what, if anything, should be said. I can imagine how hard it was on you to have to talk with your children. How do you deal with everything and everyone? My husband had a pretty emotional day. I want to keep him in a bubble so he can concentrate on getting better but I know people need to talk with him. The doctors are concentrating right now on trying to stop and shrink the tumors in the brain. Once that's done, they will start on one of the therapies.I'm trying to take things one day at a time.

RE: I am so scared

by mg576 on Thu Feb 16, 2012 09:05 AM

Quote | Reply

Thank you Ib-in-msp.I hope all is well with you. I can't tell you how much I appreciate you and Midmomom responding to my message. I tried talking with a couple of our friends about what I was going through but it freaked them out. When I read your and Midmomom's message I was so encouraged. I'm going to keep myself reminded that there are good treatments for RCC and that God is driving the bus now. 

My prayers are with you all.

RE: I am so scared

by Midmomom on Thu Feb 16, 2012 04:12 PM

Quote | Reply

mg576, We are actually doing pretty well at the moment.  Have been through some tough spots - one word of advice - I thought some of what my husband was going through was the metastatic disease or the Sutent, but turns out it was a BAD infection, probably pneumonia.  He was REALLY sick for a while...fevers, coughing, chills - you get the idea.  So the point is, they can get sick with other things - don't always assume it is the cancer or the medicine.  He had to stop his Sutent for 5 days while he fought the infection, but is now on his second cycle.  We will have scans the middle of next month to see how it is working, but currently I am more than grateful that he is feeling so well and "normal" for the most part.  Our friends and family have been wonderfully supportive, with lots of prayers and notes of encouragement.  When he was feeling so poorly, though, there were a few times I had to comfort the friends and family.  My prayers go up for successful treatment of your husband's brain tumors. 

RE: I am so scared

by Rnrnc on Fri Feb 24, 2012 01:50 AM

Quote | Reply
My husband has been fighting kidney cancer for 16 years. There is so much more to work with now. I hope you are in a very up to date center with Doctors who are on the cutting edge of medical science. There are positive changes in cancer therapy every day. My husband had two brain tumors treated in November. They are gone now, thanks to stereotactic radio surgery. He had no downtime. He went to work the next day! He has renal cell cancer in his chest. It has been there for 5 years that we know of but has not changed. So far he has not been on any meds. He has been followed carefully. His doctors are surprised by how well his own immune system has kept things at bay. Oh yes, he also had RCC in the prostate. ( only the third person in the literature). That was six years ago. So we have had some rough times. My husband is still working harder than any two people, traveling all around the country and constantly caring for our kids and grandkids. We can only attribute his energy and health to prayer. We have always felt like we were believers, but there is nothing like a Christian Prayer Warrior Chain to lift you up! For us it is palpable! Now I want to get the word out about the most exciting announcement I have ever heard. If you want to have hope, just google "Dendritic vaccine at Roswell Park cancer institute". Watch the video and thank God. A real cure is coming! Lets discuss it!

RE: I am so scared

by shotqueen1 on Sat Feb 25, 2012 12:47 AM

Quote | Reply

I am so excited to hear about your husband. You both have no doubt been through so much, but to me it is such an encouraging story!! I am 39 & was diagnosed last November with stage IV RCC. I had the left kidney removed in December & was supposed to start IL-2 in January. Had to postpone that because they found a brain tumor. Had the sterotactic surgery also & am now scheduled to start treatment on Monday.  I also heard about the possible vaccine at Roswell Park! Instead of praying for me, I ask that my friends & faimly pray that a cure (vaccine) is found.

I am very encouraged to know your husband is doing well after so many years with RCC. Just goes to show the Dr's dont know everything & that prayer & positive attitude go a long way!!

 

RE: I am so scared

by Rnrnc on Sat Feb 25, 2012 04:19 AM

Quote | Reply
Thanks for writing back. I will pray for you and for a cure as well. God can take care of both at the same time. Many people have been cured by IL2! I hope that someday this will all be just something that happened a long time ago. The Roswell vaccine makes so much sense. It has already worked for others. Now, with the addition of Rapamycin, it promises to have more durable results. I'm not a "magical" thinker. I am an RN, so I have been trained to think scientifically. Keep things as normal as possible during your treatments. It will be over soon. Send a positive message to your body demanding to be healed. My husband and I send love and prayers.

RE: I am so scared

by gonzalemi2004 on Tue Feb 28, 2012 12:30 AM

Quote | Reply

Hi,

 

Your story really makes me feel better.  My dad had his kindy tumor removed last November but has 8 tumors in his lungs.  H e was on th il-2 but it didnt work.  He then was on Votrient which shrunk them but quickly stopped working.  He was then on Afinitor but it didnt work.  I keep tellng him that he needs to build up his immune system, eat better and exercise more.  Did your husband get a vaccine or would you say its mostly his immune system doing its job?

27 Posts | Page(s): 1 2 3  Next 
Subscribe to this message board discussion

Latest Messages

View More

CancerCompass Survey

If you were considering traveling for cancer treatment, which headline would you find more interesting?

Get $75 for taking a research survey

We care about your feedback. Let us know how we can improve your CancerCompass experience.