Renal Medullary Carcinoma (kidney Cancer)

That1true,

First let me say I am sorry to hear of your diagnosis. My husband was diagnosed in January with this horrible disease. Where are you being treated at? You should NOT be ignored! There is alot of good oncologists out there and you should be getting the care that you deserve. And what did they tell you about your treatment? I know you are worried for your loved ones but im sure they are going to want to be there to support you. If you want to you can private message me if you have any question. There is alot of good people that are on this board that are there for answers and support. I can only speak as a wife of someone with this cancer so I can't fully understand what you are feeling but keep positive and fight for a doctor that will help you and support you!

that1true

Fist off, don't give up on yourself yet!!!  My husband was diagnosed with Medullary 16 months ago.  We live in Richmond VA and he started treatment here.  When we were not sure what further treatment he could take we decided to go to MD Anderson to see Dr. Tannir based on other posts I have read on this sight and his local oncologist agreeing it could be a good idea.  Dr. Tannir changed his diagnosis because he does not have sickle cell.  Go see him!!! MD got us in pretty quickly and it truely was a positive experience as a whole.  But you have to believe in yourself, believe in God, and fight like hell!!! I hope that you have a strong supportive family and friends.  If it would help to talk to someone who actually is fighting let me know an email address and I will ask my husband to contact you. I know it helped him in the beginning to talk to a friend who was fighting a rare cancer herself.  We will pray for you as well.  Feel free to email me atcabuckle@aol.com.

Best wishes, Carrie

On May 09, 2012 3:03 PM that1true wrote:

hey everyone, i was told yesterday that i have medullary carcinoma of the kidney, which was a hard pill to swallow seeing that i have been pretty much healty my whole life. About 3 or 4 weeks ago i started have this pain in my stomach that i thought to be gas. So i did al i knew to do to get rid of it. finally one nigh the pain was just too much to bare s iwent to the ER thinkig ill get a shot or a pill to relieve all gas and everything would be good. To make a long story short 3 doctor ad 2 weeks later they inormed me i have this cancer. Im only 25 and im worried for mysef but more worried for my loved ones. Any advice would help....

Praise The Lord that1true:  you sound like someone I know.  A dear friend was recently diagnosed with is monster about your age.  I am trying to learn all I can about it so that along with prayer and faith, I might be able to encourage him and his family who are dear friends of mine.  I have some medical training and research ability and if you like can walk with you on that side as well as the spiritual side. I know that God is able and is a Healer. So I am praying for you that God will show mercy and give you an awesome testimony.  I will help you praise him now and then.  Look to the hills from which cometh your help, your help cometh from The Lord.  Stay in touch with me please.

Hello everyone,

Haven't been on here in a while and wanted to check in. Today my husband is getting his second round of Taxol and Carbo. He was on adriamycin/gemzar and that shrunk the kidney some but didn't do anything for the other tumors. After his last scan and the not so good results, they are trying this chemo regimen to see what will happen. They are going to scan him next week after today's round. We are not giving up, but at this point we are thankful for everyday that he is here and not taking it for granted. Dr Tannir and his local oncologists have been great. Our faith has gotten us this far and will continue to get us through.

Hope all is well with everyone and I will keep everyone updated.

Love to all! Stephanie

Hang in there!  Because of Dr. Tannir my husband is getting a treatment that is keeping his cancer at bay, he is still working, and is planning a trip to take our 4 year old son to Pittsburgh to see his beloved steelers and pirates.  We got to a point where dr.s in VA didn't even know what they could give my husband anymore.  So have faith and enjoy the gift you have of time, time to share special moments and create memories. Trust me I know how hard each day is and that you can't stop your day to day life but that even a siple evening of laughing and thowing water balloons at one another can be great.

CarrieBuckle,

Thank you, we are definetly grateful for each day we have and thankful for the little things as well. I think we are very lucky to have Dr Tannir involved in our husbands treatment, he is an amazing doctor and he is truly fighting for a treatment for this cancer. Hope your husband and son have a wonderful trip! Take care, Stephanie

I would like to hear some updates on this cancer.  My 19 year old daughter was diagnosed with this rare cancer in February 2012.  We are praying for a miracle and do believe that God's power will heal.  PLEASE if anyone is willing to share, please do so.  We are currently with Cancer Treatment Centers of America in Zion, IL.  Thank you and may God bless. 

On Jul 24, 2012 7:07 PM mamma.harrel l wrote:

I would like to hear some updates on this cancer.  My 19 year old daughter was diagnosed with this rare cancer in February 2012.  We are praying for a miracle and do believe that God's power will heal.  PLEASE if anyone is willing to share, please do so.  We are currently with Cancer Treatment Centers of America in Zion, IL.  Thank you and may God bless. 

I would suggest getting in contact with Dr Tannir at MD Anderson in Houston TX. My husband is now under his care and is in the middle of a chemo regimen. There is a trial that is coming up at MD Anderson for this cancer, we are waiting to find out if my husband's tissue sample is a match so he can take part in this trial. Dr Tannir is really working towards a treatment for this cancer, MD Anderson is one of the few places treating this rare cancer. If you are willing to share as well, what has been her treatment so far? I will include your daughter in our daily prayers. We believe in God's power as well that my husband will recieve a miracle. Take care and God bless!

I agree, Go see Dr. Tannir.  I promise it is worth the trip. My husband was originally diagnosed with Renal Medullary Carcinoma and Dr. Tannir really broke it down to look at my husband as an individual and looked to find a treatment that is best for him and reassured us that we were not at a brick wall where there were no more options. This is where we were getting at home being that he has been getting treatment since April 2011.  It is an amazing facility as well!

Good luck!  Prayer is also great medicine. I recommend setting up a caringbridge site for family and friends. It helps to get positive messages from them and then you only have to relay things once.  My mom keeps up my husband's site for us.

We will be praying for your family.

On Apr 07, 2010 8:13 AM jabsmom wrote:

I am hoping that there others out there with this rare disease that are willing to speak out and get this horrible disease even recognized in the medical community.  The majority of the people with this disease have it for years before they are even diagnosed.  The systems are there but doctors are not trained to recognize them.  Early diagnosis is the key to this very aggressive cancer.  Looking back I can see that my son had these symptoms for at least two years before he was diagnosed.  The link to the sickle cell trait must be studied.

Hope to hear from others

My nephew was diagnosis with Medullary Kidney Cancer in March 2012.  His docter is Andy Armstrong at Duke Hospital in Durham, NC.  He is a great docotr and he is doing all he can for my nephew.  All we have to lean on is the power of Prayer.  We know God can heal my nephew and we are praying that he will.  We have to step out on Faith and Hope.  I think about my nephew everyday all through the day, and I pray that God will heal him.  We all know that this is a type of cancer that spread fast, but remember the cancer is not as fast as God.  Some may say, "why am I speaking so much about God".  Who else is going to do the healing.  My nephew is 35 years old married and have 2 sons.  He wants to raise his boys and see them progress through life like we all do with our children.  My brother and his wife have a lot to deal with.  No one wants to face the fact that there child is sick and there is nothing they can do for him.  You can have all the money in the world, but when it comes down to a sickness like this, money cannot do you any good.  You cannot buy a drug to heal this cancer.