Please help...lymphatic system involvement

jannes75

Hi, I'm hoping someone can provide me with any information they know about involvement of kidney cancer with lungs/lymphatic system. My sister was diagnosed with Stage IV RCC about 2 years ago. At that time it was our understanding it was just in her lungs and liver. She started on Votrient and had an excellent response for about 6 months. After she had her kidney removed the Votrient stopped working and she had a tough recovery as we found out it was also in her pelvis and she had some fractures that were causing her a lot of pain. She started on Inlyta last summer and did pretty good except for trouble with her hip/leg pain where the fracture was. Her last scan in March showed clear lungs and stable liver as well as decreases in some lymph nodes we had found out about after her initial diagnosis.

The fracture in her leg/pain got much worse the last few months so she went in 3 weeks ago for a partial hip replacement and to get a rod in her leg. She has been in a world of pain sense then. I won't go into the details but she's had to be hospitalized because of the pain as well as not being able to breathe. She retained a ton of fluid in her body and even though her leg went down, her mid-section is still carrying a lot of fluid which is why she couldn't breathe. They did a CT scan and saw a lot of mets in her lungs, one doctor even wondered if it was lymphatic lung cancer. So she got a bronchoscopy yesterday and they confirmed it's still kidney cancer, but that now the lymphatic system was involved and it's very aggressive. They said it was a whole different animal and they're trying to determine what chemo to get her back on. 

I live out of town so I only hear second hand what the doctors say, but this really scares me. She had an uphill fight as it was but this sounds even worse? The bad thing is when she was first diagnosed she was pretty healthy. She does so well on chemo and can still work, but everytime she has surgery and has to get off it the cancer just goes ballistic. It's been 3 weeks so they're starting her back on chemo and doing radiation on her one bone they couldn't operate on.

I guess I'm wondering if anyone could shed light on what they possibly mean by the lymphatic system being a whole different animal. She already had some lymph nodes involved which we knew about, so I'm not sure what this means? Anyone else have this?

Up until now I had a good feeling about her hanging on, but the emotionaly toll the past 6 months have been terrible and she's had a lot of other things non-health-wise to deal with. 

Thanks - I don't really post but come here to read people's stories and I wish everyone here the best.

twinthings

Hi Jannes,
I can't really

Hi Jannes,

I can't really speak about the lymphatic system but thankfully, there will be others who can shed some light on this for you. 

What I can say is just how very sorry I am for what your sister is going thru.  I think it's awesome that you have come here, to help her.  She's lucky to have you. 

I'm sure living apart from her makes this all the more difficult, for both of you.  Hang in there.  Keep doing what you can to get answers and help her.  And keep us updated. 

Lifting your family in prayer,

Sindy

jannes75

twinthings said:

Hi Jannes,
I can't really

Hi Jannes,

I can't really speak about the lymphatic system but thankfully, there will be others who can shed some light on this for you. 

What I can say is just how very sorry I am for what your sister is going thru.  I think it's awesome that you have come here, to help her.  She's lucky to have you. 

I'm sure living apart from her makes this all the more difficult, for both of you.  Hang in there.  Keep doing what you can to get answers and help her.  And keep us updated. 

Lifting your family in prayer,

Sindy

Thanks

Thank you for you nice words. I'm trying to be her advocate but it seems like everything is so unclear. I feel like all we do is wait. I've tried investigating clincial trials but it seems like so many want no prior treatment. Also, she lives in a small town and probably won't be able to travel frequently if need be. The tumors in her lungs are very aggressive and we need to get them down asap as she can't breathe. I think her liver has gotten worse too. We're just hoping we can find something that can work on her fast. 

Any advice anyone has in dealing with clinical trials would be appreciated as well.

cubsfan9

Yikes!

Good Morning, Jannes!

Yikes!! Your sister has certainly been through a lot.  She is fortunate to have you to care about her.  I can't offer any insights on the lymphatic involvement.  Have you visited smartpatients.com? It is another good discussion board with a lot of medical insights and information about trials.

Praying that you will all be able to get some answers and come up with a treatment plan that will improve your sister's situation.                             ~Sharon

 

NanoSecond

jannes75 said:

Thanks

Thank you for you nice words. I'm trying to be her advocate but it seems like everything is so unclear. I feel like all we do is wait. I've tried investigating clincial trials but it seems like so many want no prior treatment. Also, she lives in a small town and probably won't be able to travel frequently if need be. The tumors in her lungs are very aggressive and we need to get them down asap as she can't breathe. I think her liver has gotten worse too. We're just hoping we can find something that can work on her fast. 

Any advice anyone has in dealing with clinical trials would be appreciated as well.

Clinical Trials

Your friend needs to consult with an oncologist who has expertise in renal cancer - especially if it has turned aggressive.  Where is she located?

Since time is of the essence, please consider registering at: www.SmartPatients.com.  No only is there an abundance of expertise available on the site but there is a user-friendly interface for checking out all clinical trials.

In the best case she should be seeking out an immune-based clinical trial.  These are trials that offer either an anti-PD1 or an anti-PDL1 checkpoint inhibitor (drugs that remove the "breaks" on the immune system) or perhaps an experimental dendritic vaccine.  If these terms don't mean much to you right now that's OK - but it is even more reason to head over to SmartPatients.

The NIH (National Institutes of Health - based in Bethesda, MD) conduct lots of different clinical trials and offer superb medical support. Some of the most exciting work is being done by Dr. Stephen Rosenberg (who, years ago, pioneered HD-IL2). But it is by no means confined to his group alone.

It is not true that most trials demand no prior treatment.  In fact it is just the opposite.  Many of them are interested in patients that have failed one or more targeted or chemo therapies.  You just have to search around a bit to find those that do.

Your friend is so very fortunate to have an advocate like you.  Hang in there.

Jojo61

cubsfan9 said:

Yikes!

Good Morning, Jannes!

Yikes!! Your sister has certainly been through a lot.  She is fortunate to have you to care about her.  I can't offer any insights on the lymphatic involvement.  Have you visited smartpatients.com? It is another good discussion board with a lot of medical insights and information about trials.

Praying that you will all be able to get some answers and come up with a treatment plan that will improve your sister's situation.                             ~Sharon

 

Hi Jannes,
So sorry to hear

Hi Jannes,

So sorry to hear about the challenges your sister is going through. I am glad she has you to support her though. There is some good advice on here, and we are all here to support you along the way. My thoughts and prayers are with you.

Big hugs

Jojo

Srashedb

For what it's worth

my husband was diagnosed with stage 4 clear cell carcinoma; he had 2 spinal mets. One was surgically treated and the other with cyber surgery.

From what I have learned, renal cancer can spread through the blood or the lymphatics. So far, my husband's mets are believed to have been carried by the blood. There is nothing to say they cannot spread through both but so far, his lymph nodes are clear.

we are on a wait and see so he gets scans of chest and abdomen every 3 months with a bone scan less frequently. His oncologist will make it every 4 months should he have a year (from nephrectomy) with no progression.

he is scheduled for scans in 2 weeks and it is beyond stressful. His oncologist is "guardedly optimistic"". He is 67 so 10 years without progression and the meds being tested would be a great thing.

all of this is to answer your question; it sounds like your sister's cancer is spreading through the lynmphatics and those on this board who have more knowledge can probably provide more info about treatments.

sarah

donna_lee

Srashedb said:

For what it's worth

my husband was diagnosed with stage 4 clear cell carcinoma; he had 2 spinal mets. One was surgically treated and the other with cyber surgery.

From what I have learned, renal cancer can spread through the blood or the lymphatics. So far, my husband's mets are believed to have been carried by the blood. There is nothing to say they cannot spread through both but so far, his lymph nodes are clear.

we are on a wait and see so he gets scans of chest and abdomen every 3 months with a bone scan less frequently. His oncologist will make it every 4 months should he have a year (from nephrectomy) with no progression.

he is scheduled for scans in 2 weeks and it is beyond stressful. His oncologist is "guardedly optimistic"". He is 67 so 10 years without progression and the meds being tested would be a great thing.

all of this is to answer your question; it sounds like your sister's cancer is spreading through the lynmphatics and those on this board who have more knowledge can probably provide more info about treatments.

sarah

The good part...

is that the lymph nodes are doing their job, which is to be the garbage collectors from throughout the body, as they filter and remove waste cells, bacteria, and viruses...and even cancer cells.  Then they are supposed to destroy what doesn't belong in the body and send it packing (i.e waste cells in urine, excrement, etc.).

In this case, it is overwhelming, and the lymph nodes can't keep up with the find and destroy mission.

I didn't have any drug therapy all three times it was found in the nodes.  The first surgery removed the tumor, mets, and a set of nodes with 2/11 positive.  The RCC recurred in single nodes one year, and again 2 years later.  Each one was surgically removed, as they were in  locations that were accessable and operable.

I hate to suggest more surgery, but sometimes it may be work. The newer drugs have been effective for some people who have posted on this board; but, again, you need to hear from them.

At least we can be here to try to answer questions and support you, a relative and caregiver.

Cinco de Mayo is around the corner. Find a beer and a lime and relax a moment.

Donna

Jan4you

{{{{ JANNES }}}}
Hugs to you

{{{{ JANNES }}}}

Hugs to you and your sister~

 

You are a loving, wonderful sister to seek out informaton to help you.

Just know we'll walk this journey along side you if you needs us, we'll be here!!

Let us know how YOU are doing as well.

 

Warmly, Jan

 

jannes75

Jan4you said:

{{{{ JANNES }}}}
Hugs to you

{{{{ JANNES }}}}

Hugs to you and your sister~

 

You are a loving, wonderful sister to seek out informaton to help you.

Just know we'll walk this journey along side you if you needs us, we'll be here!!

Let us know how YOU are doing as well.

 

Warmly, Jan

 

Thank You

For all your kind words. She's still in the hospital and they had her on so many drugs for pain that she was extremely disoriented and confused. After a couple of weeks of radiation on her knee and pelvis the pain was getting better but she was so loopy it was scary. They started weaning her off drugs and she is now just on fast acting oxy as needed. It's almost been 24 hours however, and she still seems confused, so now they are ordering a brain scan as a precaution, which makes my heart drop. I know there are treatments but I'm afraid this would do her in. We're just praying very hard now. She has such a strong life force I feel she can beat the odds but this would be a scary thing to hear.

 

 

foxhd

jannes75 said:

Thank You

For all your kind words. She's still in the hospital and they had her on so many drugs for pain that she was extremely disoriented and confused. After a couple of weeks of radiation on her knee and pelvis the pain was getting better but she was so loopy it was scary. They started weaning her off drugs and she is now just on fast acting oxy as needed. It's almost been 24 hours however, and she still seems confused, so now they are ordering a brain scan as a precaution, which makes my heart drop. I know there are treatments but I'm afraid this would do her in. We're just praying very hard now. She has such a strong life force I feel she can beat the odds but this would be a scary thing to hear.

 

 

It can get tough

but the good news is that she is being closely watched. I have faith in our medical system and believe theyy will do the right things. If she is loopy, so be it. It all takes time and with it are unwanted complications. Keep asking questions of her caregivers and give her your support. Not too much in this business moves along fast enough. There is infrequent immediate gratification in our cancer world. Let her know that you are looking forward to better days. We've all been there.