IBD + Large Cell Lymphoma

[__caitlin]

Hopefully you can keep going. Chemo isn’t easy and they do feel worse each week in the cycle because it’s killing off white blood cells. You mentioned starting with something called Elspar. I‘m wondering why you’re not doing doxorubicin. It is the strongest chemo of the CHOP protocol.

The way it was explained to me is that, for this first week, Elspar is being used more as a "pre-treatment" before he officially starts chemotherapy. The idea is to use the Elspar to get him "in the best shape" before starting the actual cytotoxic drugs. Also, she said we definitely want to start with IV-based drugs first since his intestines are so messed up, it's questionable how much he'd absorb from anything oral. (Why I'm still giving him all these oral meds on top of this if that's the case is another question...)

And we will be using doxorubicin / the entire CHOP protocol, but it looks like we're doing it in a different order than usual? This is the protocol cheat sheet they gave me if you want to see it. It looks like doxorubicin will actually be last, after vincristine and cyclophosphamide.

One clarification -- the PARR test from the cytology report said it came back as t-cell neoplasia. Not sure if that's factoring in here.

Do you think I should ask more details about why they're using this order? And/or potentially advocate for pushing up the doxorubicin depending on their answer?

 

[hopscotch]

Interesting that it is T-cell lymphoma. It makes sense you are doing a different order because of that. I think I may have mentioned earlier I had heard there’s a difference in what you do depending on whether it’s T-cell or B-cell. That’s why you want an oncologist to guide this.

If the oncologist didn’t fully explain rationale for the order it might be worth asking for an explanation.

 

[MissCi]

Hi there,

I'm so sorry that you and Max are going through this. It's heartbreaking.

My cat Sienna was diagnosed with both small cell AND large cell lymphoma in October of this year. She couldn't keep any food down and after numerous tests (including two unremarkable ultrasounds) we received a diagnosis after an endoscopy with biopsies.

She was immediately put on 10mg of prednisolone until we could meet with the oncologist the following week. It is my understanding that starting steroid treatment prior to chemotherapy is not a contraindication for cats the same way it is for dogs. But obviously, I would always defer to your vet.

After meeting with the oncologist, we opted to proceed with the CHOP therapy. We are seven weeks in and she is doing well. I typically have to give her Cerenia for the first few days after each treatment, and one tab of mirtazapine depending on the drug administered.

I wish you the best of luck and I am more than willing to answer any questions you may have.

 

[hopscotch]

Hi there,

I'm so sorry that you and Max are going through this. It's heartbreaking.

My cat Sienna was diagnosed with both small cell AND large cell lymphoma in October of this year. She couldn't keep any food down and after numerous tests (including two unremarkable ultrasounds) we received a diagnosis after an endoscopy with biopsies.

She was immediately put on 10mg of prednisolone until we could meet with the oncologist the following week. It is my understanding that starting steroid treatment prior to chemotherapy is not a contraindication for cats the same way it is for dogs. But obviously, I would always defer to your vet.

After meeting with the oncologist, we opted to proceed with the CHOP therapy. We are seven weeks in and she is doing well. I typically have to give her Cerenia for the first few days after each treatment, and one tab of mirtazapine depending on the drug administered.

I wish you the best of luck and I am more than willing to answer any questions you may have.

That’s great to hear your success so far, MissCi. It sounds like you caught the cancer early as I did. I had an unofficial ultrasound done within about a week of requesting an endoscopy. I don’t think you see large cell lymphoma on an ultrasound when it’s early. Best of luck with continued success. I didn’t start to think Simba was beating it until almost two months into treatment, when he appeared to possibly turn a corner, slowly put on a little weight and get just a little bit better. Of course the oncologist and I didn’t want to assume anything and we just carried on and finished the entire treatment protocol and did an endoscopy at the end three weeks after the last chemo.

 

[MissCi]

But in the 24 hours since then, he's been worse. He seems to have lost strength in his legs whenever pooping is concerned -- he goes back to the litterbox multiple times to have little amounts of diarrhea, and has started falling into his own poop because he doesn't have the strength to squat. This has led to multiple cleaning sessions which he hates. He also still seems nauseous throughout the day.

What colour is Max's poop? If it is black/super dark that could be indication that he is losing blood. Before her diagnosis was confirmed, Sienna's energy also started to decline. We found her lying outside of her litter box after trying to make a bowel movement and we rushed her to the emergency clinic where it was determined that a tumor had ruptured and she had become anemic resulting in her having minimal energy. We treated it with Sulcrate and that resolved the issue. I have no idea if Max is experiencing something similar (vs. disease progression etc.) but I would have kicked myself for not at least mentioning it.

There is a really great oncologist on youtube that I follow who has helped me immensely through this scary diagnosis. If you're interested (and it's allowed) I can send you the link to her channel.

 

[MissCi]

That’s great to hear your success so far, MissCi. It sounds like you caught the cancer early as I did. I had an unofficial ultrasound done within about a week of requesting an endoscopy. I don’t think you see large cell lymphoma on an ultrasound when it’s early. Best of luck with continued success. I didn’t start to think Simba was beating it until almost two months into treatment, when he appeared to possibly turn a corner, slowly put on a little weight and get just a little bit better. Of course the oncologist and I didn’t want to assume anything and we just carried on and finished the entire treatment protocol and did an endoscopy at the end three weeks after the last chemo.

Thank you and I really hope so. I feel like Sienna has had the small cell lymphoma for a while as she was vomiting intermittently for quite some time. No one seemed to take it seriously and just chalked it up to being a "cat thing" which is definitely not true. I believe the large cell lymphoma is relatively new but it's still so scary to navigate as I know the prognosis is typically not favourable.
Reading about Simba has given me some hope so thank you so much for sharing his story. I'm really glad to hear that he is doing well years later.

 

[__caitlin]

What colour is Max's poop? If it is black/super dark that could be indication that he is losing blood. Before her diagnosis was confirmed, Sienna's energy also started to decline. We found her lying outside of her litter box after trying to make a bowel movement and we rushed her to the emergency clinic where it was determined that a tumor had ruptured and she had become anemic resulting in her having minimal energy. We treated it with Sulcrate and that resolved the issue. I have no idea if Max is experiencing something similar (vs. disease progression etc.) but I would have kicked myself for not at least mentioning it.

There is a really great oncologist on youtube that I follow who has helped me immensely through this scary diagnosis. If you're interested (and it's allowed) I can send you the link to her channel.

Jesus -- I can't even fathom small cell + large cell, especially with unremarkable ultrasounds and all the other tests you must've done. Just that discovery process alone must've been so much on all of you. I'm so glad your baby is doing well with the chemo.

Max's poop right now, if anything, is a little too light in color. Prior to everything going down, chronic diarrhea was his main symptom. After the cancer, constipation became a huge issue. But seems like when he's not constipated, it just goes back to diarrhea. So if anything the food is going through his system too fast/lightly.

He IS mildly anemic, though; that was established earlier, but the oncologist said he is still at the level where it should be safe to proceed with chemo. I do wonder now if the anemia is contributing to his weakness in his hind legs / lower abdomen?

How was the ruptured tumor diagnosed, though? Was it via ultrasound? Just wondering what I could ask for when I talk to the vet this week about Max's hind leg / pooping weakness.

Also, yes! I'd love to see the oncologist you follow on YouTube. Anything would help right now during this time.

 

[kittenmittens84]

My cat recently died of gastrointestinal large cell lymphoma, he was 12. He had IBD (diarrhea mainly) for most of his life, it took a 2-3 years of flare ups to find the right way to get it under control for him but after that it was well controlled.
Originally the vet did an ultrasound and suspected cancer, I had to take him to an IM vet for a biopsy to confirm it and they diagnosed him with lymphoma. Unfortunately it had metastasized and the vet said we could try an oral chemo protocol, but that it would likely only buy him 1-2 months. She predicted that with only palliative treatment he had another 4-5 weeks.
We chose palliative treatment because the chemo didn’t seem worth it since the cancer had spread, and he was prescribed prednisone to take daily as well as anti-nausea medication to take in case he got nauseous.
The prednisone definitely helped him feel better, and he lived another 2 months after his diagnosis. Most of those two months he was doing pretty well, eating a lot, hanging out with us, even playing with his ball a few times. The last two weeks I could tell he didn’t feel as good, no bathroom troubles but he didn’t want to eat as much and he mostly slept or sat around under the table.

sorry for the depressing response, it sucks that lymphoma has such nonspecific symptoms and that cats are so stoic about pain. I think if we’d caught it earlier he could’ve done chemo and had more time with us but unfortunately he was acting normal until almost right before being diagnosed so there really was no outward sign that something was wrong. Hopefully it works out better for you and your cat, but if it makes you feel any better I do think my cat had a happy and peaceful end despite the cancer. The prednisone really helps them feel better, zofran helped him eat, and the vets were very supportive.

 

[__caitlin]

Hey everyone,

Unfortunately, my baby Max passed away on his own this afternoon. Even just this morning, he was peeing okay on his own and walking around. And last night, he was still walking around, alert-eyed, doing things he enjoyed and purring. But over the span of just 4-6 hours this afternoon he declined very fast, lost the ability to walk or stand at all -- and quickly developed trouble breathing and then had multiple seizures before he died. I was even able to push up his next chemo appointment to tomorrow afternoon -- but it was not to be.

I think at every juncture, he had medical treatments and doctor appointments waiting for him that were happening on as fast a timeline as a reasonable human system would allow -- it's just that at every juncture, the cancer was faster. That's honestly the most astounding part of this process -- that where reasonable people would think "he's stable now, let's follow up in 3 days," the cancer was like "those 3 days are going to be the equivalent of 3 months."

Regardless, I'm really glad that he got to die at home, on his favorite blanket, in my arms, and one of the last thoughts he had was looking outside the window when he heard the schoolchildren playing -- something he used to love to do right up until the last days.

hopscotch daftcat75 I especially wanted to thank both of you for your incredible support throughout this (so quick yet so long) journey. You guys were my literal virtual support while I navigated a terrible diagnosis that I had absolutely no prior experience with and I definitely wouldn't have made it through this without you guys. Thank you so much.

Attached is a recent pic of Max, just from this past Saturday. Sitting on that favorite blanket, purring and happy

 

[daftcat75]

Hey everyone,

Unfortunately, my baby Max passed away on his own this afternoon. Even just this morning, he was peeing okay on his own and walking around. And last night, he was still walking around, alert-eyed, doing things he enjoyed and purring. But over the span of just 4-6 hours this afternoon he declined very fast, lost the ability to walk or stand at all -- and quickly developed trouble breathing and then had multiple seizures before he died. I was even able to push up his next chemo appointment to tomorrow afternoon -- but it was not to be.

I think at every juncture, he had medical treatments and doctor appointments waiting for him that were happening on as fast a timeline as a reasonable human system would allow -- it's just that at every juncture, the cancer was faster. That's honestly the most astounding part of this process -- that where reasonable people would think "he's stable now, let's follow up in 3 days," the cancer was like "those 3 days are going to be the equivalent of 3 months."

Regardless, I'm really glad that he got to die at home, on his favorite blanket, in my arms, and one of the last thoughts he had was looking outside the window when he heard the schoolchildren playing -- something he used to love to do right up until the last days.

hopscotch daftcat75 I especially wanted to thank both of you for your incredible support throughout this (so quick yet so long) journey. You guys were my literal virtual support while I navigated a terrible diagnosis that I had absolutely no prior experience with and I definitely wouldn't have made it through this without you guys. Thank you so much.

Attached is a recent pic of Max, just from this past Saturday. Sitting on that favorite blanket, purring and happy

I'm sorry to hear about Max. The outlook with LCL was never very good. I know you did all you could for him. If there's a silver lining, he passed at home with those who loved him and whom he loved back. Take some time and take care of yourself. When you're ready, I hope you'll post a tribute to him in the Crossing the Bridge forums. While there's no shortcut through grief, I did find this helpful for finding footing and meaning within the grief. May his memory be a blessing!
Urgent Coping Skills for Pet Loss Grief - Center for Pet Loss Grief

 

[hopscotch]

I’m very saddened to hear of this news, Caitlin. Thank you for letting us know. You’ve been and will continue to be in my thoughts.

You did everything you could for Max, did online research, sought more information here and sought help from an oncologist. Max would love that you did everything in your power for him. It speaks to your bond with him and how special he was.

This is difficult to say and get right so please forgive me if I stumble with words. We all go one day, so when it was Max’s time I hope you find peace in knowing there was not a long difficult period and that you had relatively good time together. That good time is precious. The photo you posted is proof. He is at peace now and has no cancer at all. I am sure he loves you for all you did for him. Like daftcat75 says, please take time for yourself and be easy on yourself, especially in the next while. You went through this with him and need time to rest and recover. Stay well.

 

[Margot Lane]

What a deep soul…you can tell he was much loved & thanking you for all you did for him. Agree w Hopscotch…take the time to care for you, now.

 

[Meowmee]

Hey everyone,

Unfortunately, my baby Max passed away on his own this afternoon. Even just this morning, he was peeing okay on his own and walking around. And last night, he was still walking around, alert-eyed, doing things he enjoyed and purring. But over the span of just 4-6 hours this afternoon he declined very fast, lost the ability to walk or stand at all -- and quickly developed trouble breathing and then had multiple seizures before he died. I was even able to push up his next chemo appointment to tomorrow afternoon -- but it was not to be.

I think at every juncture, he had medical treatments and doctor appointments waiting for him that were happening on as fast a timeline as a reasonable human system would allow -- it's just that at every juncture, the cancer was faster. That's honestly the most astounding part of this process -- that where reasonable people would think "he's stable now, let's follow up in 3 days," the cancer was like "those 3 days are going to be the equivalent of 3 months."

Regardless, I'm really glad that he got to die at home, on his favorite blanket, in my arms, and one of the last thoughts he had was looking outside the window when he heard the schoolchildren playing -- something he used to love to do right up until the last days.

hopscotch daftcat75 I especially wanted to thank both of you for your incredible support throughout this (so quick yet so long) journey. You guys were my literal virtual support while I navigated a terrible diagnosis that I had absolutely no prior experience with and I definitely wouldn't have made it through this without you guys. Thank you so much.

Attached is a recent pic of Max, just from this past Saturday. Sitting on that favorite blanket, purring and happy

I am so sorry, made me feel so bad to hear this, but he was at peace at home with you and he knows how much you love him. I lost my Wizard to lymphoma too. We never did the biopsy but he was treated for small cell and did better for a while and then crashed. I know how much it hurts. Wizard was at peace too, but we had to go to dvm. Still it was very peaceful.

Probably Max’s IBD like Wizard’s was already lymphoma for that year or more, once they get to the end it is very fast. You did what you could but most cats do not survive it even if they have a remission for small cell- 70% have a relapse and don’t live more than 4 months or so from what statistics I found. Wizard was 21 but I would’ve kept him with me forever if I could have.

Run free sweet Max and watch over your mom.

 

[MissCi]

Oh Caitlin. I'm so sorry.

It's apparent that Max was very well loved and cared for. You did everything you could so please be gentle with yourself and take the necessary time needed to take care of you now. You will miss him terribly...but try to take some comfort in the fact that he is not sick anymore; he's running free.

 

[__caitlin]

Thank you everyone for your incredibly kind words. Outside of work, I have been spending most of this week sleeping, just processing the grief and depression (and catching up on the sleep I haven't had the past couple months). My sense of time hasn't totally returned to normal yet. I of course miss Max a lot and feel it in my bones every day, but that is a part of the pain I do accept as I did always know that this day would come one way or another -- and that this is just the cost of loving someone, a price I gladly pay. Maybe in the next couple weeks I will post a tribute to him in the Crossing the Bridge section

Meowmee I think what you said is probably right -- that he may have had cancer even as early as his IBD diagnosis in Spring 2021. The endoscopic biopsy wouldn't have caught the place where his cancer was -- in his small intestine, which I've realized through this process is also probably one of the worst places to have the lymphoma, because it really screwed everything else up in terms of his ability to absorb nutrients, defecate, etc., much less with the multiple small masses as he had.

But I think back on that decision in the spring and, given all the info I had at the time, I'm still not sure that I would've risked the surgical biopsy. After all, it could've come back negative that day and turned into cancer a month later and all of this could've still happened the same way. When you look at the science around these illnesses there just still is so much we don't know and limitations we have to work around. Cancer is a terrible disease, but this whole experience has given me such an appreciation for what terminal care can look like and what our loved ones deserve from the healthcare system.

Anyway, thank you all once again I've been able to spend a lot more time with Cephas, Max's sister, now. Just doing my best to take it one day at a time.

 

[Meowmee]

Thank you everyone for your incredibly kind words. Outside of work, I have been spending most of this week sleeping, just processing the grief and depression (and catching up on the sleep I haven't had the past couple months). My sense of time hasn't totally returned to normal yet. I of course miss Max a lot and feel it in my bones every day, but that is a part of the pain I do accept as I did always know that this day would come one way or another -- and that this is just the cost of loving someone, a price I gladly pay. Maybe in the next couple weeks I will post a tribute to him in the Crossing the Bridge section

Meowmee I think what you said is probably right -- that he may have had cancer even as early as his IBD diagnosis in Spring 2021. The endoscopic biopsy wouldn't have caught the place where his cancer was -- in his small intestine, which I've realized through this process is also probably one of the worst places to have the lymphoma, because it really screwed everything else up in terms of his ability to absorb nutrients, defecate, etc., much less with the multiple small masses as he had.

But I think back on that decision in the spring and, given all the info I had at the time, I'm still not sure that I would've risked the surgical biopsy. After all, it could've come back negative that day and turned into cancer a month later and all of this could've still happened the same way. When you look at the science around these illnesses there just still is so much we don't know and limitations we have to work around. Cancer is a terrible disease, but this whole experience has given me such an appreciation for what terminal care can look like and what our loved ones deserve from the healthcare system.

Anyway, thank you all once again I've been able to spend a lot more time with Cephas, Max's sister, now. Just doing my best to take it one day at a time.

Yes agree, the treatment options as they are now are limited and not fault proof etc. We did not do a biopsy either because Wizard was older and always had problems with sedation. I still wonder if I had done it earlier if he could have had a better result sometimes. No one knows for sure at what point ibd becomes lymphoma and what we do to try to treat that may not always stop the progression. Wizard’s was in his small bowel also. Big hugs to you

 

[hopscotch]

Yes, the treatment options are limited at this time. Back in April when Simba achieved a year in complete remission from this disease, I asked the vet to take some extra blood during a routine health check and I had it sent (from Canada) to Dr. Leslie Lyons at the University of Missouri. I also sent a donation from a cat cancer fundraiser I ran just before the pandemic hit. I have been in contact with her about Simba's case, the Rehmannia Eight factor, and asked for his sample, donation and case to be used as part of feline cancer research into gastric lymphoma. Maybe there is something about his DNA that allowed him to survive this? I did what I could to help the body of knowledge on this for cats. It is my hope that this never happens to anyone again.

 

[Norachan]

I'm so sorry for your loss Caitin

We always lock the threads when a cat passes away, so I'll lock this one now. When you feel ready it might help to start a thread in our Crossing the Bridge forum.

Rest in peace Max