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kidney removed 2012, Now reoccurance stage 4

bowdora
Posts: 5
Joined: Jan 2013

Hello again

    My husband had his right kidney removed in 2012, he had been ned untill this last scan in aug. We went in expecting to hear the everything is good, see you in a year. That was not the case. He has a mass on liver, needs biopsy. we went to hospital for biopsy scared of what would or could happen.

    They took him back to do it but were unable to get a clear shot at it, but the Dr decided to scan his lungs. he found larger mass in rt lung. we were then sent for biopsy on that. after compete CT with contrast (he has allergy to contrast)it was seen in both lung lmpth node system and around his windpipe also.

     Now we are told it is stage 4 and needs to put on Sutent. I am so scared. He does not even take tylenol, very anti pill!they are putting him on 4 weekon the 2 off cycle. He does not feel ill at all right now. working 40+ hours a week. my worries are how will this make him feel? He is 52 and has never smoked, not over weight, and very active. we heat with firewood and that is our excerise in the winter,

what should we expect? how have others coped with work and sutent?

 

Dembel
Posts: 32
Joined: Jul 2015

Hy there,

I'm sorry you got this bad news.....I'm a caregiver as well to my husband who had radical nephrectomy for a stage 3 grade 2 tumor. Which grade was your husband?

I can not answer your question, I hope others will be able to, I can only thell that from what I heard and what I read, side effects of any drug seem very variable per person.

Strange this cancer, the patient doesn't really feel sick for a long time......and then suddenly these meds that should fight the cancer, but gives symptoms itself.

All the best, I hope your husband will not have too many symptoms.....

Dem

Footstomper's picture
Footstomper
Posts: 1238
Joined: Dec 2014

Invest in moist toilet paper. Honestly I think it effects different people in different ways. It diminished my tumours but ultimately I couldnt take it. Others on here have taken it for years with minimal side effects. I think you have to take it a day at a time and see how you get on. Try not to have any preconceptions.

Good Luck!

(But I'm serious abot the toilet paper.)

JoanneNH
Posts: 115
Joined: Sep 2013

Hi:  Read your husband's profie.  What was the size/stage of his initial tumor?

mrou50
Posts: 389
Joined: Mar 2013

I am stage IV as well and I have been on Votrient for about a year.  I was told by my oncologist that the side effects are much the same but it varies from person to person too.  "Footstomper" is correct get some soft baby wipes they will come in handy if Sutent does to his body what Votrient does and as I said my ONC suggested the side effects are about the same.  Thoughts and prayers are with you.

 

Mark

Jojo61's picture
Jojo61
Posts: 1307
Joined: Oct 2013

So sorry for your husband's news. I hope the medication works well for him.

Please keep us posted on his progress.

Thinking about you.

Hugs

Jojo

rjhillcbytwp
Posts: 11
Joined: Oct 2015

In early 2012, I lost my left kidney completely, and small parts of the right to clear cell renal cell cancer.  I have milliary pattern mets throughout all lung lobes but the tumor load is very small, with the largest nodule measuring ~13mm.  I've been through HD-IL2, Sutent, and have been taking Votrient for 2 years.  I've enjoyed stable disease since its discovery.  The only change in my lungs has been the reduction in size of two marker nodules by approximately 1/2, resolution of many of the smallest mets, and softening of some others after about 3 months of taking Sutent.  

While on Sutent, my brown hair turned white, and infrequently, I would turn a bit orange.  I worked 5 days per week too, although I'll admit frequent trips to the Men's room with aloe wipes throughout the day.  These things usually resolved during the two week rest period.  If your husband begins to experience any kind of heartburn or reflux, have his doc start him on Prevacid, Nexium, or some stout form of acid control immediately.  Like others have said, we are all unique and handle these drugs and their side effects differently.  There's reason to believe he can have an entirely different and better experience that mine. 

Now, I lead a fairly normal Votrient life; that means no alcohol, no dairy at night, and I avoid tomato based foods. Everything else is pretty much ok.  I hunt, fish, lift weights, and pretty much work five days per week in the IT finance industry. Occasionally I'll wrestle with some stomach cramping and diarrhea, but a day or two vacation from the drug pretty much solves the issue.  There are a bunch of reasons to believe that a "New Normal" life is to be expected. I'm confident that your husband will fare well.

Dutch1's picture
Dutch1
Posts: 144
Joined: Mar 2014

I'm stage four and had surgery in Feb of 2013.  The cancer came back in October 2014.  At that time, I was put on Sutent.  I couldn't take the 50mg on the 4-week on and 2-week off cycle.  After some trial and error, I'm on 37.5mg for two weeks and off one week.  

My side effects are pretty minor.  I will feel run down towards the end of the two week cycle.  I retired in 2012, so work isn't on my radar screen now except for activities of my own choosing.  I can't do what I used to do, but still consider myself fairly active.  

From what I hear, the side effects to Sutent (as with other such drugs) will vary from person to person.  

I hope that this helps.

Oh, and the Sutent (and radiation) have been effective.  The cancer isn't gone, but it's been reduced in size.  Sutent is my friend, for now.

Best wishes.

 

Dutch

 

 

cheatinlil's picture
cheatinlil
Posts: 190
Joined: Jun 2014

bowdora,

I'm also the caregiver to my husband who is stage 4.  I'm sorry your scared.  It is very scary.  Just remember to breath!  I don't know about Sutent.  My husband has done Votrient and now Inlyta.  From what I've read they have a lot of great advances with Kidney cancer treatment and I'm thinking we will all be here together (not alone) for many decades to come.  I try and tell myself after every scan:  Put my fear and feelings in a box and put it on a shelf.  I can take it back down when it is time for the next scan.  Now is not the time to worry, it is the time to live and build happy daily memories, that will turn into years and decades.  Great big hug coming your way!

Jan4you's picture
Jan4you
Posts: 1257
Joined: Oct 2013

I am sorry for all you and your husband are going through. Glad you came here to ask.

There are some great folks here who want to help and support you.

Let us walk this journey along side you. Would your hubby want to join in at this site?

Sending you healing thoughts and strengths to get through this time.

Genle hugs, Jan

Richgels1's picture
Richgels1
Posts: 26
Joined: Oct 2015

Hi, My situation is pretty much the same as yours. I was 53 when diagnosed. Never smoked, not over weight. I had my kidney removed and it came back in my lymph nodes. I was put on Sutant with good response but there are side affects. For me there was some fatigue and shortness of breath. I also experienced some blisters on the bottom of my feet. Some of my hair turned white but not all of it. Some additional body aches. I continued to work for about 8 months up until I had surgery again to remove 17 lymph nodes. It was pretty tough but doable as long as you are not doing a labor intensive job. It came back again for me also in a lymph node on my wind pipe and am now on Votient with good results. Almost 2 years now but am retiring at the end of the year (SSD). My wife and I still cut wood together. I run the saw and she moves most of the cut logs. I run the splitter and she stacks.  Let me know it there is anything else I could help with. Good luck to you, Scott

bowdora
Posts: 5
Joined: Jan 2013

thank you all for your help. Although the scare factor is still there I do feel some relief. Our new journey starts soon. My "superman" is in autobody restoration, repair, and painting. Pretty much any thing to do with saving a car from the scrap yard is his goal. (As long as it is a muscle car). We have a lot of great friends that are all volunteering to "help". 

We enjoy going in the woods to cut wood.  I love to run the saw and splitter. I will not "drop" the tree though. But get it on the ground and I can do the rest. 

Continued prayers for everyone in this journey. 

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