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Psjeepster's picture
Psjeepster
Posts: 63
Joined: Jun 2016

My Dad was a healthy very active 74 yr old man. A couple of months ago things went wrong and he was unable to eat or drink anything. 

This is what the doctor found. He has papillary renal carcinoma, follicular lymphoma, and diffuse large B cell lymphoma.

The follicular lymphoma tumor is on his intestine just below his stomach which cause a blockage so no food could get past his stomach. Anything he ate came back up because it had no place else to go.

He has had one round of chemo targeting the B cell lymphoma. This caused the tumor on his intestine to shrink and he can now eat. That is the good news.

The bad is that the chemo also destroyed his immune system. He has a history of bladder infections. I never realized how sick a person could become from what I thought was a simple bladder infection. 

We have been in the hospital for a week now. Everyday his condition improves but it is a slow process. I sit by him for 14 hours a day making sure he is comfortable and taken care of. 

 

The more awake and alert he becomes the more depressed and scared he is. We do not have a family history of cancer. I am new to all of this. I can care for my Dad physicaly but I don't know what to do for his mental support. I am at a loss here. He is now waking up to panic attacks. I just don't know what to do.

 

 

 

Kaniksu
Posts: 54
Joined: Nov 2015

Let's take some deep breaths here, and figure out how we are going to fight this...it is SCARY !...Sounds like speaking with someone from the cancer societywould be a great place to start ..doesn't your hospital have counselors? Ask a nurse.  Read the boards here.. I am sure someone will respond to you soon. That is going through the same type of cancer...I am 65 and found out I have diffuse large cell like your dad. I have gone through treatment and it is in remission...you and your dad will both find from this site other folks that are living full active lives and fighting this disease....Sit tight today you will get the. Responses you need from this board..I will be sending calming thoughts your way..nancy

Psjeepster's picture
Psjeepster
Posts: 63
Joined: Jun 2016

Thank you! I hope everything continues to go well for you on your journey to full recovery.

Psjeepster's picture
Psjeepster
Posts: 63
Joined: Jun 2016

I can not believe how much complaining I had to do to get the doctor to listen to me.

Finally after saying to my Dad in front of his nurse... if the doctor does not do something for you in the next 10 minutes I will personally track him down and drag him by the balls to this room to get you the help you need. They doubled his anxiety meds. He is now resting. It took me 7  hours. I even started calling in family members to help me get action. 

I am angry, frustrated and scared.

 

 

Max Former Hodg...
Posts: 3699
Joined: May 2012

Psjeepster,

It sounds like you have learned how to take charge and get a response out of the hospital staff.

Your dad has a lot of bad stuff going on at once. It may take a little time for the doctors to figure out a course of attack. It is possible that the hospital staff are not even oncologists, but rather "Hospitalists," depending on what floor he is on.  Most likely infection control and urinary function are their first priorities, along with his ability to eat.  And they can control his fear and pain immediately.

His two forms of lymphoma might both respond to the same chemo drugs, since they are both Non-Hodgkin's strains. But the kidney cancer is unrelated to lymphoma, and may require a differing approach.  He needs to be staged, and they will proceed from there.  Staging will require a PET scan and a CT, if he has not already had those tests.  They don't take too long, and do not cause pain.

Best case scenario: The urinary cancer is early stage, and readily treatable.  The lymphoma very likely is treatable, as the resolution of his swallowing issue suggests (the chemo rapidly reduced the tumor size).

Waiting is tough, but it sounds like they are putting out a dozen fires at once.  It may take a few more days and a few more tests before the have a clear plan for moving forward. But it does sound like his fight might well be winnable at this point.  Many lymphoma patients here have had to wait weeks or even months from initial diagnosis with a biopsy to the beginning of treatment.  From my first CT until the beginning of my first infusion was over a month, not uncommon. But kidney cancers I am unfamiliar with. You might want to check in with the Kidney Cancer Board also. Not because we don't want to address it, but because most (or all) of us here have little familiarity with it.  I have had lymphoma and prostate cancer, and I have learned that even the most knowledgable people one one Board often know virtually noting about other cancers.

max

Psjeepster's picture
Psjeepster
Posts: 63
Joined: Jun 2016

Thank you max for taking the time to help me understand this a little more.

Psjeepster's picture
Psjeepster
Posts: 63
Joined: Jun 2016

Its been a really long day, but I think I figured out what caused all the probless today. 

He started vomiting today also.

Dad has always had a touchy stomach. They are supposed to give him nausea meds every 4 hours. Somehow they missed giving him his med sense midnight on the 17th. 

As for his anxiety. Well guess what they forgot to give him last night. He went all night without his anxiety meds.no wonder why when I got here this morning he was in such bad shape.

I am new to this site. I just joined today. I want to thank you both for the support. I means alot to me.

 

 

Margiein tucson
Posts: 11
Joined: Jun 2016

Hi, treat everyday like a new day. It will have highs and lows. The more prepared you are the more you can help him. IT IS NOT EASY.  Write everything down . Write questions down . A lymphoma specialist is needed . This is difficult and unfortunately it is a full time job assisting someone thru treatment . Good luck . Don't lose faith . We all understand and we all send our best wishes .

lindary's picture
lindary
Posts: 711
Joined: Mar 2015

I realize your dad is already in the hospital but I wonder if you could get him a second opinion at another facility, preferably one that specialises in cancer treatments. 

Psjeepster's picture
Psjeepster
Posts: 63
Joined: Jun 2016

Thank you everyone for helping me help my Dad. Your insight and advice is priceless. 

Good news today. Dad got out of the hospital and is now in a rehabilitation center. 

I can never thank you all enough for your help. I gives me some peace knowing that I have a place to ask questions and people are so willing to share a part of their lives with me so I can better understand what my dad is going through.

 

Mary from NJ's picture
Mary from NJ
Posts: 60
Joined: Apr 2016

I will keep you, your dad and your family in my prayers......stay positive and keep reminding yourself of all the good you face each day.  Sometimes this is simply a smile from a complete stranger. May your dad gain much needed strength to continue his fight!  

Psjeepster's picture
Psjeepster
Posts: 63
Joined: Jun 2016

I got to take my Dad home today.  He is doing really good now.

Mary from NJ's picture
Mary from NJ
Posts: 60
Joined: Apr 2016

That is amazing news!  Your dad must be so thrilled to be back home and this will be much easier on you!  Keep up the fight for him!  Be sure to take good care of yourself as well!

Psjeepster's picture
Psjeepster
Posts: 63
Joined: Jun 2016

Awww thank you Mary! I got this!!  With everyone's help on here.

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