Caregiver to a stage IV Renal Cell Carcinoma Cancer Patient

Hi Jen,

Welcome to our forum. You have come to the right place. You will find lots of good information, advice and support. I know that you will soon get a response from someone in a similar situation to yours.

I am a survivor, not a caregiver. My best advice is to be supportive in the health care, help in keeping track of things, nutrition, etc. The emotional part is a tough one. It depends on what your husband is like. Don't be afraid to share your own thoughts with him. That will alleviate second guessing. Just being there for him speaks volumes to him! Love and support is a combination that can't be beat!

He could attend a support group, it might be helpful to him. You might need something like that too. Don't forget to take care of yourself as well.

It sounds like you are already doing all the right things! Wishing you good health!

Keep us posted!

Hugs and smiles,

Jojo

Well, one thing is for sure everyone's experience is slightly different but we are all united in supporting one another through this horrible disease. WELCOME.  There are several caretakers that post here, I'm newer. My experiences with the physical aspects of the disease so far have luckily been limited to a 2 hour ER visit that ended in a cancer diagnosis, a 9 day hospital stay and several weeks post nephrectomy recovery. Mentally, it is an ongoing battle for me and my husband as well.

One thing I learned (which my husband and I have subsequently discussed at length) is that immersing yourself 24/7 in the caretaking is unhealthy for your soul. We did the math: 236 hours straight spent together at one point. We agreed that if the cancer comes back, it can't be that way again. Our life together is never going to come to a complete halt the way it did the first time with the abrupt cancer diagnosis.  It wasn't healthy for our daughter to spend so much time without her mom, let alone see her dad in the hospital and have to move in with her grandma for 10 days. 

I still see a therapist because I struggle with anxiety about cancer recurrence. My husband is considered "high risk" for it to come back. I deal with this now by talking to a therapist. I try to acheive balance between keeping him updated on current research and information I learn here without driving him crazy. He asked me last night to back off on the "cancer talk" since his scans are coming up. I guess open communication between one another has been very helpful but therapy was really what helped me deal. 

Interestingly enough, he recently told me that our marriage is better since he had cancer. It wasn't in a bad place before, but I certianly know what he means. When you love someone so much and go through cancer together, I think it changes you forever. Luckily in our case, it evidently changes us for the better. Please come here often and look for support if you need to. You will find it here. 

jshorty29 said:

Wow!  What an amazing sourse

Wow!  What an amazing sourse of support and a plethera of information!  Thank you!

To provide a bit of medical information, David was just recently diagnosed New Year's Eve and began taking Sutent on January 1st.  At that time, David's only medical insurance was Veterans Insurance.  We spent 7 days at the VA in Long Beach, CA.  We met with his Oncologist no more than 5 minutes and we're given an RX for Sutent.  Within the first cycle, I began researching and discovered chemo (Sutent) is the "norm" the "gold standard" in treating RCC, BUT after further research, I discovered that it is only effective on about 15% of RCC patients.  We immediately sought a second opinion and payed out of pocket for a well known educator and Oncologist at UCI who confirmed the diagnosis and proceded to inform us that he would also prescribe Sutent (2 rounds only) and then look at other options that might "prolong" David's life.  David was given the grim prognosis of 20 months.

This week, we FINALLY have another PET/CT Scan to see if anything has changed.  His first scan showed a golf ball size mass on his left kidney, "growths" in his neck, trachea, spleen and stomach lining.  Nano Second:  I'm embarrassed to say, I have no idea what his cell history is...the two times we met with his oncologist at the VA, nothing like this was ever mentioned to us.

On a good note, however, I was also able to get health insurance for David and we have moved over to UCI and away from the VA hospital, where the oncologist admitted they weren't able to help with clinical trials and such. Such a sad way to treat our vets!

This is all still very new for us and we feel overwhelmed with all of this.  I think once we receive the findings on this next PET/CT Scan and meet with our new Oncologist at UCI, we will have a better understanding of what, if anything, we can do next.

I hope this brief overview gives you a better understanding of where we are at.  We have two small children at home, one with special needs and I'm overwhelmed with trying to figure out what to do next, how to keep everything at home as normal as possible and to make sure our boys are not picking up on the tension and fear that sometimes penetrates our walls. 

Also, thank you for the smart patients website,  I'm jumping on there next to see what I can find.

I'm wishing all of you a gentle and restful night.

 

Love & light,

 

Jen

 

Welcome to the group, sorry you are here. Take heart in the fact that you are not alone. Tap on my bio for a moment and spare me typing on my phone. I am a stage IV patient, diagnosed in Oct 2012 with a 15cm 2lb tumor in my right kidney, a 3.4 cm tumor in my adrenal gland, And several lung mets. I atarted a drug trial of Sutent and Nivolumab in Feb. 2013. I appeared to be cancer free in Jan 2 2014, but have since had a scan that showed a new lung met. 

Be aggressive with questions when you meet your new oncologist. Ask how he /she plans to extend your husband's life indefinitely. My first meeting was a blur and I was extremely confused and emotionally a wreck. It kept me from asking good questions. weite down your questions ahead if time and don't leave until you understand the answers.

there are multie drugs like Sutent that are designored to inhibit tumor growth. Dutent is one of 7 my dr discussed. Immunotherapy is a newwe approach and appears to have curative potential. The oldest immunotherapy is a drug called IL-2,but there is a new araenal of drugs going thru trials now called anti PD-1 drugs. They give all us stage IV folks reason to have hope that a cure is near.

a positive attitude goes a long way. I may well die from kidney cancer, but I don't think it will be today, so I choose to make the most of today. Sutent has a higher response rate that you quote. It will most likely sheink the tumors and hold the cancer at bay for some time. Believe that... If scans don't slow that, there are other drugs that can do the same. It sometimes takes a while to find the right drug for each of us. We panic when one doesn't work, but that is normal....you then try the next one and pray it works.

Hanf in there, there is hope. Ask wheat other drugs your oncologist will try if Sutent doesn't show benefit. If he doesn't have a plan, find a new RCC specialist.

Be well you are in my prayers.

jshorty29 said:

Wow!  What an amazing sourse

Wow!  What an amazing sourse of support and a plethera of information!  Thank you!

To provide a bit of medical information, David was just recently diagnosed New Year's Eve and began taking Sutent on January 1st.  At that time, David's only medical insurance was Veterans Insurance.  We spent 7 days at the VA in Long Beach, CA.  We met with his Oncologist no more than 5 minutes and we're given an RX for Sutent.  Within the first cycle, I began researching and discovered chemo (Sutent) is the "norm" the "gold standard" in treating RCC, BUT after further research, I discovered that it is only effective on about 15% of RCC patients.  We immediately sought a second opinion and payed out of pocket for a well known educator and Oncologist at UCI who confirmed the diagnosis and proceded to inform us that he would also prescribe Sutent (2 rounds only) and then look at other options that might "prolong" David's life.  David was given the grim prognosis of 20 months.

This week, we FINALLY have another PET/CT Scan to see if anything has changed.  His first scan showed a golf ball size mass on his left kidney, "growths" in his neck, trachea, spleen and stomach lining.  Nano Second:  I'm embarrassed to say, I have no idea what his cell history is...the two times we met with his oncologist at the VA, nothing like this was ever mentioned to us.

On a good note, however, I was also able to get health insurance for David and we have moved over to UCI and away from the VA hospital, where the oncologist admitted they weren't able to help with clinical trials and such. Such a sad way to treat our vets!

This is all still very new for us and we feel overwhelmed with all of this.  I think once we receive the findings on this next PET/CT Scan and meet with our new Oncologist at UCI, we will have a better understanding of what, if anything, we can do next.

I hope this brief overview gives you a better understanding of where we are at.  We have two small children at home, one with special needs and I'm overwhelmed with trying to figure out what to do next, how to keep everything at home as normal as possible and to make sure our boys are not picking up on the tension and fear that sometimes penetrates our walls. 

Also, thank you for the smart patients website,  I'm jumping on there next to see what I can find.

I'm wishing all of you a gentle and restful night.

 

Love & light,

 

Jen

 

Hi Jen.  Thanks for the additional information.  Sutent is a perfectly appropriate therapy to begin with.  However, it is not considered "traditional" chemotherapy (although technically, of course, it is).  Sutent is one of several effective TKI's (Tyrosine Kinase Inhibitors) that work to interfere with the molecular signals that tumors secrete to stimulate the formation of their own "private" blood vessels.  They need these additional blood vessels to grow and proliferate - so if Sutent or another TKI can inhibit these signals the tumor will stop growing and, in many cases, start to shrink.  However, these drugs are not a "cure".  The strategy for using them is that they can be a "delaying tactic" that one can employ to extend one's life while, hopefully, waiting for newer drugs that will offer long-term remission. 

One class of such drugs are called immunotherapies.  They rely on one's own immune system to do the "heavy lifting" - that is, to fight and kill the tumor cells.  If the immune system can recognize tumors as "alien" they will attack and eliminate them.  Unfortunately, most tumors are rather clever and they have numerous mechanisms that allow them to appear as normal cells to the immune system.  In which case the immune system will just ignore them.  The oldest effective immune therapy, mentioned earlier, is called HD IL2 (High Dose Interleukin-2).  It is FDA approved. About 7-14% of the clear cell patients who undergo this therapy achieve the holy grail of a Complete Response (CR).  Others get a Partial Response (PR) whereas others get no response at all.

The newer immune therapies are mostly confined to clinical trials right now.  One of the most promising is to block the PD1/PDL1 pathway.  PD means "Programmed Death".  These drugs are known as "Checkpoint Inhibitors" or, more commonly as anti-PD1 or anti-PDL1. But once again, only a small minoritiy of patients (so far) are achieving CR with them.  Still, it is a very benign treatment (not like HD IL2 which requires hospital supervision and is a very tough regime to undergo).  Hopes are high that that combining PD1/PDL1 with other treatments will likely expand the base of Complete Responders.

Just letting you know I was thinking of you today. I hope you had a productive conversation with your husband's new doctors. 

jshorty29 said:

Wow!  What an amazing sourse

Wow!  What an amazing sourse of support and a plethera of information!  Thank you!

To provide a bit of medical information, David was just recently diagnosed New Year's Eve and began taking Sutent on January 1st.  At that time, David's only medical insurance was Veterans Insurance.  We spent 7 days at the VA in Long Beach, CA.  We met with his Oncologist no more than 5 minutes and we're given an RX for Sutent.  Within the first cycle, I began researching and discovered chemo (Sutent) is the "norm" the "gold standard" in treating RCC, BUT after further research, I discovered that it is only effective on about 15% of RCC patients.  We immediately sought a second opinion and payed out of pocket for a well known educator and Oncologist at UCI who confirmed the diagnosis and proceded to inform us that he would also prescribe Sutent (2 rounds only) and then look at other options that might "prolong" David's life.  David was given the grim prognosis of 20 months.

This week, we FINALLY have another PET/CT Scan to see if anything has changed.  His first scan showed a golf ball size mass on his left kidney, "growths" in his neck, trachea, spleen and stomach lining.  Nano Second:  I'm embarrassed to say, I have no idea what his cell history is...the two times we met with his oncologist at the VA, nothing like this was ever mentioned to us.

On a good note, however, I was also able to get health insurance for David and we have moved over to UCI and away from the VA hospital, where the oncologist admitted they weren't able to help with clinical trials and such. Such a sad way to treat our vets!

This is all still very new for us and we feel overwhelmed with all of this.  I think once we receive the findings on this next PET/CT Scan and meet with our new Oncologist at UCI, we will have a better understanding of what, if anything, we can do next.

I hope this brief overview gives you a better understanding of where we are at.  We have two small children at home, one with special needs and I'm overwhelmed with trying to figure out what to do next, how to keep everything at home as normal as possible and to make sure our boys are not picking up on the tension and fear that sometimes penetrates our walls. 

Also, thank you for the smart patients website,  I'm jumping on there next to see what I can find.

I'm wishing all of you a gentle and restful night.

 

Love & light,

 

Jen

 

Hi Jen, nice to meet you!  First, let me say that I am sorry for all you are going through! I think you are doing a remarkable job handling all on your plate! Your family are blessed to have you!  I had a pre-emie also. He was 28 weeks, ten years old now.  I have an idea of what you are dealing with there.  

How do they know it is RCC? I am assuming that you have no path report to know what type of cancer your husband has. I may be wrong, but did he have surgery? From what you wrote he didn't have surgery yet and they are still figuring out what to do.  When he does have surgery to remove the Kidney, then get the path report as soon as possible. Get a copy of all of his reports, blood work etc. for each and every test he takes.  Keep them in a file.  If possible, also get the scans on cd rom and shuffle that along with you to any doctors you go to for a second or even third opinion. The mere fact that they told your husband he only has 20 months puts out a signal to me.  It signals to me that maybe he isn't with an "up to date" doctor.  Most doctors today that are experienced with Kidney cancer will not say those words.  They know there are drugs out there that can kick cancer's you know what! Since your husband is young, he might be able to try the IL-2 which Nanosecond spoke about. Please ask them about this. He will test to see if he can do it.  There are also other immunotherapy drugs trials that were mentioned.  Please correct me if he did have surgery already.

So, in short I would like to tell you that you go forward believing that your husband can be treated and be stable.  You stay on these boards and work with us here and we will help you to be sure you do all the necessary things.  I hope by now you signed up with www.smartpatients.com.  There are a lot of VERY educated people there with lots of experience, both as patients, and in the medical field as well. You have a family here, now.  

I was going to suggest, if at all possible, that your husband join the group here.  I am guessing you are sharing the posts here with him, and he is happy to note that others here had been told they should have passed on but are flourishing.  

You be sure to take care of yourself as well. Take time to meditate and eat and sleep as much as you can.  Anytime you need a shoulder, come here and you will also get virtual hugs along with it!  Many prayers are going out for you.  You can do this!  XXOO  Keep in touch!

Angela

a_oaklee said:

I am also a caregiver

Hi Jen.  Welcome.  I'm sorry to hear about what you are going through and I can completely relate to your situation with your husband.  My husband was also diagnosed at a Stage 4 over 2 years ago.  It's probably a bit weird to say things calm down a little in time, but I have found it to be true.  The initial trauma of finding out about cancer is the worst.  Not to mention hearing that it's Stage 4.  We thought at the time that we were doomed.  But it's been over 2 years now and my husband is doing pretty well, considering.   This website has helped me immensely.  I got to read about other people who are Stage 4 and doing well for years and enjoying life.  It gives us hope.  You asked what more you can do for your husband.  It sounds to me like you have everything covered and that you are doing an excellent job of helping him.  Please remember to take care of yourself too.  I just can't think of what more you can do to help him, because everyone is an individual.  Hopefully you both just keep communicating to eachother how you feel and what you need.  You can send me a private email if you would like.  Take care.  Thoughts and prayers go out to you, your husband and children.

Annie 

Do you think your husband would enjoy participating on this site?  There are a great bunch of guys on here and I think it would be tremendously helpful.  My husband does not participate here.  I wish he would, but he's not big into being online, or opening up to others.  He relies on me to do research and only tell him positive uplifting stories. 

 

Jen - just wondering how your husband's appointment went at the oncologist the other day?

Thinking about you.

Hugs and smiles,

Jojo

My dad had kidney removed in 1990 and it came back 23 years later. Multiple lesions in the spine, mass in the right surgery bed. It's hard to see my dad so weak. Dr diagnosed him having sciatica for the last three months. When they finally decided to run a CT scan they found it. Oncologist told my dad to go to hospice. I am not giving up that easy. He still has lots of life in him. The pathology report they could not determine the type of cancer. They assumed it was RCC since he had it before.