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Grace's Journey: T-Cell Indolent Lymphoma

40K views 144 replies 42 participants last post by  Mjpar72 
#1 ·
Hello,

I want to share Grace's story here in case it helps others. This story is still in progress.....

Backstory:

March 2012- I noticed Grace had bumps under her jaw by her neck. She was acting normal and full of energy. Her annual physical was coming up and i did not notice any did not think to much about it.

April 2012- Grace's physical went well. She had lost about two pounds but I attributed it to my significant increase in walking....which led to her increase in exercise. The Vet said not to worry about her lymph nodes and they felt ok.

Grace and I had a great year. Lots of love, exercise and fun.

April 11, 2013- I noticed some swelling and puffiness around her face. I was not too concerned because she was acting fine. However, it got worse over the next few days. Her mouth and eyes got swollen. I started giving her Benedryl and the swelling did not improve (nor get worse).

April 15th, 2013 -I gave her benedryl and called the Vet. Her breathing was ok and she had an appointment at 3 PM. I left her at home and went to Boston to work in the Medical Tent at the Boston Marathon. We had a team of 8 people assisting with taking temperatures and another 5 people running on sponsor exemptions. My company provided the equipment. I was having a great time and was able to go to the finish line a few times to watch the runners cross. I I left around 1:00 to get home and get Grace to the Vet's. At 3:00 PM as I was pulling into the parking lot, my co-worker notified me of the explosions. I was able to get in touch with the two leads and determined the 8 people in the tent were ok. We did not know about the ones out on the course.

Grace and I went into the vet's office and told them about the explosion. The regular vet was not there and a temporary vet was covering. She was nice, but the entire office was watching the news. She even examined Grace right in the waiting room (where the TV was located). I didn't think too much about it since it was just an allergic reaction. The vet did say her lymph nodes were huge in her throat, shoulders and legs. She gave her an injection of something (starts with D??) and put her on prednisone with a taper schedule. The swelling gradually subsided, she got off the prednisone and was back to normal.

April 20, 2013- Grace celebrated her 9th birthday.

NOW:

May 8, 2013- Grace goes to the vet for her annual. Yet a different, temporary Vet sees her. She has lost another 2 lbs since last year. Again, I attributed it to exercise. I mentioned her lymph nodes and he checked in more depth. He said I could watch and wait or do a blood test. I went for the blood test.....really not concerned. She was healthy and asymptomatic. I figured it was just allergies.

May 9, 2013- My world comes crashing down. My regular vet calls me at 10:38 AM and tells me she has bad news. My heart is in my throat and I am sitting down, shaking. She told me Grace's leukocytes are extremely high and she has lymphoma. She says it is extremely serious and I have two options. Put her on high dose prednisone or go to Tuft's and have the cancer staged. She was very negative about the staging and told me the chemo is extremely toxic and could kill her. She said the prednisone may or may not put her in remission but that she would be comfortable. I cried my eyes out and did not know what to do. I figured my vet would not steer me wrong so I told her I would start the Prednisone. That night we started her on 80 mg (she is only 62 lb). I then did a bit of research, spoke with a friend who's lab had gone through chemo and also emailed "Land of Pure Gold Foundation". Everyone's feedback was pro-treatment. I decided that I would call Tuft's the next day.

May 10, 2013- I called the main campus of Tuft's for an appointment with an oncologist. I was told that they needed to evaluate the case and to have her file faxed over. I called my vet, gave them the fax number and the person to fax the file to. I waited....

May 11 and 12.....still waiting, but it was the weekend. Figured that Tufts would call me on Monday or Tuesday at the latest. I was not freaked out since I figured she was on Prednisone anyway and that would help her.

May 13, 2013. I had not heard from Tufts by 5:00 PM so I called and left a message begging them to call me the next day.

May 14, 2013. No one called from Tufts. I called them again and implored them to call me back. I then called my vet and asked if they could call for me. My vet said wait until Wed and if Tufts still did not call, that I should try the Tuft's in Walpole (not part of the main campus, but part of the system).

May 15, 2013- I called Tufts in Walpole at 2:00 PM and left a message. By 2:10 the most wonderful person (Becky) called me back and said she would get me in the next day.

May 16, 2013. Grace and I go to Tufts. She is given a tip to tail exam by a 4th year medical student along with taking her history, symptoms, etc... We were then seen by one of the Internal Medicine Veterinarians. She looked at Grace's chart an noted that my original vet had documented an enlarged lymph node over a year ago! This was the first I heard about it. She also told me that she was on a too high prednisone dose and that the prednisone is bad news. It makes it difficult to aspirate the lymph nodes and if on prednisone for an extended period, it makes chemo less effective. I cried again. Here I was listening to the original vet and trying to do the right thing! Then I tried to get her in to Tufts 6 full days earlier. It seemed like it was one bad thing after another. They took blood and obtained some aspirate. They cut her dose of Prednisone from 80mg to 40mg.

May 17, 2013. The results are not conclusive. The Internist is concerned because we need to send her blood to Colorado State for Cytometry and Parr testing. It is Friday and the earliest results would be shipped, received and tested until Wednesday. Because of the clock ticking and the high dose of prednisone, he recommended an injection of Elspar. That drug is used sparingly and usually only once or twice (he explained why, but I don't want to get it wrong). However, it would buy us two weeks That would give us time to get the test results back.

May 23, 2013- Still no call. I called Tufts to find out if the results are in. They are not, but they will call Colorado State tomorrow to follow up.

May 24, 2013- Believe it or not, the Cytometry machine was broken for most of the week!!!! Really? More bad luck. They promised Tufts that we would know the following week. Of course it is Memorial Day weekend, so there will be another day delay.

May 29, 2013. Tufts calls to tell me she has T Cell Indolent Lymphoma and that this is the best possible diagnosis. What?? Really- My emotional roller coaster is peaking with joy. What does that mean? It is a very slow growth lymphoma that Grace probably has had for well over a year. She said in most cases they don't treat for "years"....YES she said years! :smooch:However, she wants to get an oncology consult. Cut the prednisone down to 20 mg.

June 3, 2013- The oncologist recommended not treating at this time. They will watch it monthly with CBC testing, tip to tail touching and weight monitoring. They also recommended swapping her to a higher quality dog food (Nutro or Blue Buffalo) and completed the schedule for the prednisone taper. She iswill be off it by June 11. They want her in for a follow up at the end of June. I asked about exercise and they said to let her make the decision. I asked about getting another dog (I was looking another golden prior to Grace's diagnosis) and they said it is up to Grace. If she is not stressed fine. If it causes stress- don't do it.

Oh...and I will be getting a new vet in the future (for regular, routine pet care and I wrote a letter to the Hospital Director at Tufts main campus (the one that did not return my call) complaining about the person who did not return my calls.

June 5, 2013- I feel like Grace has a new lease on life and that I am blessed. I prayed so hard for a miracle and the diagnosis is a miracle to me. She is almost off the prednisone and still eating like a little piggy. We did about a 2-1/2 mile walk tonight and she did not show lethargy until the last quarter mile. She is like her old self! Having a greatly reduced prednisone dose is making a big difference. That and my positive energy. I don't look at her pictures (and her) and cry. I know she is 9 and anything can happen.

We are living each day together to the fullest. I LOVE, LOVE, LOVE her. Grace is one of my special "Soul Goldenmates". She is my 5th golden and though I have loved all of them deeply, Grace (2004-) and Ginger (1990-2001) were with me during the toughest times in my life (separation, divorce, relocation, death of a parent, new love).

This is a really, really long post. I tell you some Grace stories in future posts and keep you updated on her progress.

TAKE AWAYS!

-Always get a second opinion
-There is always hope
-Dogs know how you are feeling- stay positive
-Take lots of pictures
-Lean on your friends
-Share your stories and celebrate life (Grace sent in cookies to my work friends to celebrate her diagnosis)
-Research, Research, Research
-Become informed
-Be persistent

I hope this helps someone in the future.
 

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#3 ·
Thank you so much for sharing Grace's story. It does help to have your experience and knowledge in the ole arsenal "just in case". My prayers will be for Grace to live a long long healthy life, never again to be associated with that terrible diagnosis.
 
#8 ·
I normally avoid the cancer threads because it terrifies me, but I just read your post about Grace's journey and I'm so glad I did.
And that you so much for the "take always". It's amazing.
 
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#9 ·
All the best to you and Grace. I've read that giving Prednisone can lend chemotherapy less efficacy if you decide on chemo in the future.

Our boy lived with lymphoma for 16 months (with chemo) and was in a strong clinical remission when a viral infection in his GI tract proved too much for his suppressed immune system to deal with.

This stuff can be beaten!

One of the goldens here on GRF, Meggie, lived several years after a T-Cell diagnosis:

http://www.goldenretrieverforum.com/cancer-information-golden-retrievers/28984-lymphoma.html
 
#10 ·
June 8, 2013.- Grace is almost off the high dose prednisone my ex-vet prescribed. 10 mg tomorrow and 10 on Tues the done. She has more energy every day. The prednisone did a number on her. The lymph nodes in her throat are not swollen right now (could be the pred). Today we went for a 3 mike walk. I let her splash in the mud puddles, walk in a brook, swim in a pond and trot ahead of me on the path. She is such a joy.

Gracie's next blood work and exam is the week of June 24. If she is doing well, I will actively look for another dog. I want her to have a companion and to be honest, it is for me too. Even though she is doing well now, I have thought a lot about losing her. I don't want to be alone. Anytime I have lost a golden, I have always had another one to comfort me.
 
#11 ·
Sounds like you are on the right track. Hugs and kisses to Grace and remission.
 
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#12 ·
June 10, 2013- Grace and I spent a great weekend together. Here is a picture of her sunning herself before we ventured off on another good walk (water and splashing was involved)!

I made a decision that IF her next set of bloodwork (CBC and exam) is good, she is going to get a brother (or sister). Her next exam is the week of June 24th. I have started researching breeders in New England. There are great threads on this topic. So far, I have reached out to: Thornylea, Cloverdale, Twin Beau D, Laze Daze, Numoon and Yukon.

 
#14 ·
June 12- hmmmm. The Lord works in mysterious ways....was this a sign?
I was out walking Grace and we came upon a lost dog. Poor guy didn't know where he was. I brought him home and checked his tags. The Rabies tag was from Wells, Maine over 100 miles away. His name tag had a disconnected phone number. I called the vet office in Maine and they were closed. then I contacted Animal control. No one had reported him lost. He played with Grace and she was fine (excerpt when he tried to mount her). Animal Control came to pick him up about an hour later.

I called today and learned that his owner died and the dog just moved here with the Granddaughter. She collected him, is having the Id tag updated and will be keeping a closer eye on him. Nice happy ending and Grace I saved him from going out to a busy road.
 
#15 ·
This is the lost/found doggie.


Oops picture won't upload.
 
#16 ·
June 15- I think the prednisone is finally out of Grace's system. She is very energetic and has a spring in her step. Her ball is constantly in her mouth and her eyes are bright and she is giving me the "golden smile".
 
#17 ·
June 21- Grace had an excellent week. She went on a few long walks, played fetch and did some trekking in the mud. She was groomed today and looks so pretty
 
#19 ·
Picture

I don't have the hang of putting pictures in...trying again
 

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#20 ·
Glad to hear she's doing so well!
 
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#24 ·
Video of Grace giving paw

Trying to upload a quick video
http://www.facebook.com/video/video.php?v=10200894060941009

We are going to Tufts Tuesday for routine blood work and an exam. I am praying for good news. I felt a "bump" behind her left rib cage today. Hoping it is a fatty cyst. It feels kind of squishy.
 
#26 ·
June 25 Vet Appontment

June 25- Grace had a very good visit at Tufts. This is a picture of her relaxing in the waiting room after her blood draw and cyst aspiration.

She gained 3.5 lb since the last visit and is at a really good weight. The cyst on her left side was "fatty". Her temp, heart, etc were all good. They carefully measured her lymphnodes with calipers and will keep track of them. The Internist said the biggest indicator is her general demeanor. The nodes will change in size- sometime larger and sometimes smaller. They drew blood for a CBC and we'll have results in a day or two.

They also believe that she has had this condition for over a year and are hopeful that it will stay in this state for many more:smooch: I sure hope so.

With any luck the CBC will be steady and she'll go back in a month.
 
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