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Informtion on kidney cancer spreading to the skin??

KJones1969
Posts: 158
Joined: Mar 2012

Well my hubs had an appointment at Duke yesterday. First he had an x-ray to see how the fluid looks with his malignant pleural effusion, well there was fluid still there so they could not take the pleurax out. He was so hoping they would take it out since he had no drainage for a week but that was a no go. He was very disappointed because of the discomfort with the pleurax. Does anyone else have one and if so does it cause you pain?

His second appointment was with his kidney oncologist just to see him since he started his Inlyta 3 weeks ago and to do bloodwork and get the results of that. Well he went in with a spot on the top of his head that he thought was a cyst. His doctor told him he believes it is the cancer spread there and for us NOT to touch it at home or try to operate on it here. LOL....that isn't funny but you have to laugh sometimes. He has scans in 5 weeks to include a brain scan this time and we will know 100% what it is but in the meantime I am worried to death about him. Have any of you seen or had this happen to you?

Thanks,

 

Karen

angec's picture
angec
Posts: 622
Joined: Mar 2012

That sounds very odd, he thinks the RCC went to his forehead. What kind of spot is it? is t a lump or change in colors. How is he feeling now is he doing any better with the new meds.  please keep us outdated.  I hope he is wrong about the spot.

KJones1969
Posts: 158
Joined: Mar 2012

Angec,

We thougth it was very odd for it to be on his head as well. It isn't on his forehead but the top left of his head. It has grown to a little larger than a dime in 2 weeks and is red looking with no head on it. It is very painful and his doctor at Duke told him to just use warm compresses on it. He is doing good with the new medicine with the exception of being very fatique all of the time. Most of his pain right now is with his head and the pleurax in his right side. We have 3 more weeks before scans and it is probably driving me crazy more so than he is by waiting so long. He said the brain scan this time would show what the spot is on his head. I pray he is wrong so we will see.

I will update after we go back in 3 weeks.

Thanks for asking about him.

Karen

angec's picture
angec
Posts: 622
Joined: Mar 2012

Karen, I hope things turn out well also, you both can do with some good news!  Maybe the spot is a reaction from the meds. My mom gets her first scan on the 19 after starting votrient, I hope it is helping as well.  I am a nervous wreck too, I can sympathize greatly and sure could use some positive news as well.  Please do keep in touch, love to you both!  XXxoo 

 

Angela

bry4856's picture
bry4856
Posts: 14
Joined: Nov 2012

Yes after not having any new cancers, last Spring I felt a lumb on top of head that started bleeding if I caught with my comb. My doctor removed it finding it to be renal cell cancer. I saw my oncologist and he siad I was only his second patient to have this in all his years of being a doctor. Well only 6 months later I got two more and again had them removed. Having no problems there since, but now this November my cancer in my chest has grown and needs to be treated. Started Voltient in Dec but had many side effects worst being vomiting, I could not hold solids down, I stopped for 4 weeks and started Sutent for two weeks and still having side effects also just got out of 5 day stay in hospital. Now waiting to get a new plan of attack.

KJones1969
Posts: 158
Joined: Mar 2012

My husband's is on the top of his head. It has grown to a little larger than a dime in about 4 weeks. His oncologist wants my husband to wait 3 more weeks for scans to see what it is if he can stand the pain. Was yours very painful? We can't touch his and if he accidentally does my husband is in a lot more pain. His doctor said that is what he believes it is, we are just hoping it isn't but now since you responded I don't know. My husband's had spread to his lungs when we found out he has RCC. Now my husband had very little side effects with Votrient but after his first 3 month scans it stopped working. That darn cancer finds a way to fight whatever drugs you take. He was then on Afinitor and the side effects were awful on him. Now he is on Inlyta and the only side effect is extreme fatique so if it helps it will be worth. I'll be praying your new plan of attack works. :)

Texas_wedge's picture
Texas_wedge
Posts: 2807
Joined: Nov 2011

Karen, here are a couple of links that may prove of some help to your doc.  They're not very cheering reading

but then I don't think they'll tell you a great deal more about your Husband's situation than you're already aware of.

 

Spontaneous regression of renal cell carcinoma metastases.

K C Chang, K L Chan, C W Lam

https://docs.google.com/viewer?a=v&q=cache:C-scjG5ZQ1QJ:www.hkmj.org/article_pdfs/hkm9903p72.pdf+&hl=en&gl=uk&pid
=bl&srcid=ADGEEShlt4pi_W1KfD6QL8GPk53-OUslV2bdnA5TC3ZCae2PGa7mvq8sUEtZdD-f6kTFFtRgmXpFrn99HGLXRvNSAFRLBWnR
-JUcsBlJC8rCz54JU5ZsO844urtEsbgPJkZ2nE2HQ4TD&sig=AHIEtbQLLrKZ3Ff1xplKBbdXSXJ4AwiqYQ
Renal cell carcinoma presenting as an ominous metachronous scalp metastasis Lisa G. Smyth, MD, Rowan G. Casey, MD, and David M. Quinlan, MD
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3499921/



KJones1969
Posts: 158
Joined: Mar 2012

Thank you Tex for sending these to me. I have gained so much inspriation from all of you on here and hope. All of you fight a battle everyday, it just amazes me that over the years there has never really been anything discovered that cures cancer completely. My cousin is a doctor that is working on a cure for HIV in Washington right now. I told him he needs to ax that and work on one for cancer. Not that HIV isn't important but right now to all of us on here cancer is of the utmost importance.

angec's picture
angec
Posts: 622
Joined: Mar 2012

Kathy, it is unreal that the cancer can come outside on the scalp like that! So depressing this cancer!  They really should be able to find a cure for it and my feeling is that there is one, a simple one but they don't really want to find it!  That is my opinion.  The 15 year old student recently won an award for detecting lung, pancreas and ovarian cancer just by using a saliva test for proteins that these cancers produce in the very early stage. The saliva test costs 3 cents. Why was this young child able to do this and not doctors or scientists?  Maybe they are thinking too hard about it. 

http://newsfeed.time.com/2012/05/24/15-year-old-creates-test-for-pancreatic-cancer/

 

Anyway, perhaps the doctor should remove the scalp tumors if at all possible?  Maybe show him the info of the new post about it.  Hope it goes well. Love to all!

KJones1969
Posts: 158
Joined: Mar 2012

The brain scan showed up that the nodule on his head is RCC that has spread there. After me pitching a fit about him seeing a surgeon since we were already there they got us in with one this afternoon. He is having surgery tomorrow afternoon to take it off. His other scans showed that the lung nodules had enlarged in size since his scans 6 weeks ago and so he is now off of Inlyta. This has been the 3rd treatment option since last May. He told us basically that we have limited options at Duke because he is reacting the same to all treatment options. The oncologist called me back this afternoon and said there could be some options at John Hopkins if we are willing to go there. I told him whatever will help my husband if he is up for it.

I know I have read a few of you that go there. Can you give me some input on doctor's, treatment options or whatever you know? We have to make the right decision for him and at this point God knows what that is so keep him in your prayers.

NanoSecond's picture
NanoSecond
Posts: 532
Joined: Oct 2012

Many folks speak extremely highly of Dr. Hans Hammers at Johns Hopkins.

Amongst them are Chris & Dena Battle.  Are you familiar with their blog?

It is here:

http://kidneycancerchronicles.com/

Read their onging saga - and be inspired.  There are still more options for your husband.

Hang in there,

 

-NanoSecond (Neil)

KJones1969
Posts: 158
Joined: Mar 2012

I do follow their blog and read it every time it they add to it. We will see what the next few weeks bring.

Texas_wedge's picture
Texas_wedge
Posts: 2807
Joined: Nov 2011

Karen, with luck you'll meet up with our very own Alice and John Thompson and also Vicki and Rick Loucks and get comfort and further inspiration from them - they will all be ready to help you all they can, I'm sure of that.

alice124's picture
alice124
Posts: 860
Joined: Mar 2012

Hi Karen,

Sorry to hear yet another challenge rears its ugly head in the RCC war. And I hope the surgery today was successful.

Yes, as Tex points out, John's oncologist is Hans Hammers and we're very pleased with him and his staff. Below is a link to Hopkins with  information on clinical trials and other material, including out-of-state communication. Also noted is a BMS  Anti PD-1 website you may want to review. 

Know I'm thinking of you and your husband. Keep us in the loop as to your next step.

http://www.hopkinsmedicine.org/kimmel_cancer_center/research_clinical_trials/

 

http://www.bmsanti-pd-1drugresearchstudies.com/index.aspx

 

KJones1969
Posts: 158
Joined: Mar 2012

Hey everyone! Thanks for your concern. Well he had surgery on Thursday and when they got ready to take him off of the oxygen his saturation dropped in the mid 80's so he was admitted overnight. They did an x-ray and said it is hard to tell the difference in pleural effusion and pneumonia but that he may have a touch of pneumonia.

I went over and met with his oncologist Friday morning to discuss options. He said after looking over everything he has been through and with him having sarcomotoid features and fuhrnman grade 4 that he didn't think the antiPD-1 would work. He also said what we already know, he has been through 3 drugs since May 2012. He told me that we may have only more shot at getting the cancer to calm down some and he recommended a combination of Avastin, Gemzar and Xeloda. I have been exhausted so haven't done any research on the last 2 drugs but am very familiar on Avastin. He said those would hopefully help battle the sarcomotoid part of the cancer and the Avastin would hopefully help with the vegF. I am nervous as heck about these because he said it is a very toxic combination but he would be taken off of it immediately if we see issues. He has been forturnate not to lose his hair and not have to much nausea or vommiting and he said that would definitely happen with this. I asked him because he is in advanced stages is it really worth putting him through this. He said we would just try 2 cycles and do scans at 6 weeks so we would know fairly soon if it is helping.

We have to talk about it this weekend and I have to call his oncologist back on Monday. How do we know what the right decision is? I want whatever is best for him and what is going to put him through the least amount of pain and suffering but how do we know what that is?

Any advice any of you have on any of these drugs or combination of these would be greatly appreciated.

Texas_wedge's picture
Texas_wedge
Posts: 2807
Joined: Nov 2011

Karen, this is such a crucial stage, as you well know.  I don't remember whether or not you've tried KIDNEY-ONC on ACOR.  There are folks there who are vastly more knowledgeable than we are here and much better-equipped to help you this weekend. 

Please confirm whether you've been there.  If not, you could join immediately and free. 

However, in the state you must be in, if going there is more than you can manage right now, I'd be happy to post over there on your behalf in the hope that someone can respond with some real help.

KJones1969
Posts: 158
Joined: Mar 2012

That would be awesome if you could do that Tex. He had a really rough night and having an equally rough morning so I am staying right by his side as much as possible. Thank you!

Texas_wedge's picture
Texas_wedge
Posts: 2807
Joined: Nov 2011

Try not to reduce yourself to a wreck.  He needs your help so, for both of you, dont drive yourself into the ground.

I've posted on KIDNEY_ONC  and indicated the urgency so I'm hoping I'll get some response soon.  I guess there's some time today, in the US  (I'm in Scotland so I'll be retiring in about 5 hours time) and I'll keep a close eye open for responses.

Texas_wedge's picture
Texas_wedge
Posts: 2807
Joined: Nov 2011

I'm trying to gather more information.  So far, it's suggested that Hans Hammers at Johhn Hophins would be a great choice.  Also that if it's possible, cabozantinib, which has worked magic for Chris, has to be a good shot (and would be kinder than the old chemotherapy drugs).  (By the way, was it suggested that your Husband could get into the Xeloda, Gemzar, Avastin trial?).

Dena has asked whether he is being seen by Dan George at Duke, who treated Chris there.  She is aware of a patient who got cabo and wonders whether DG might write it for your Husband.

I'll pass on anything else I can.  Look after yourselves as well as you can and assure your husband that there are a lot of people thinking of you both and wishing him well.

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