IBD + Large Cell Lymphoma

__caitlin

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Hey everyone -- so after almost a year of managing IBD, my cat, Max, 14 years old, was just diagnosed with probable large cell lymphoma (waiting on cytology report, but it's almost guaranteed that's what he has). If anyone would like to see the progression of what happened leading up to this diagnosis, I had another thread about it here.

I know large cell lymphoma has one of the worst prognoses out of all the possible versions of this situation. Now that we know that's what this most likely is, I thought I'd post a new thread to ask if anyone else here has dealt with this, and what your experiences have been?

For anyone that decided to pursue treatment, what did you use / how did it go? And for anyone that stopped treatment, what did palliative care look like for your cat?
 

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hopscotch

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Hello Caitlin. I’m sorry to hear about this diagnosis. I’m replying to this because my cat, Simba, has food sensitivities, has IBD and gastritis and has survived aggressive large cell lymphoma and is cancer free. Below is the link to my post about his story.


Next Thursday marks two years since the terrible day I received confirmation of the diagnosis. He has been in complete remission and free of cancer since April 2020. He is 15 years and 9 months old now.

If you need any other information other than what I posted I am happy to share my experience. I personally think that Rehmannia Eight with Doxorubicin chemotherapy was a combination that worked, but definitely I would recommend the chemo if you do nothing else.

I had him on palliative care during chemo because I didn’t expect chemo to work for long. The palliative care cocktail is reduced today to keep inflammation down in his digestive tract. I had him on 5mg Prednisolone, 3mg Omerprazole (compounded in a pill) and 12mg Cerenia and 75mg Rehmannia Eight all daily during the chemo. The whole thing worked very well.

One last thing….as soon as I heard the diagnosis I got my hands on an oral Lomustine chemo pill through Simba’s regular vet and this started on that fast growing cancer quickly, buying us time to get the appointment with a vet oncologist. The regular vet wrote the prescription and I took time off work to fill it at a human pharmacy to make sure I got it right away.
 
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__caitlin

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Hello Caitlin. I’m sorry to hear about this diagnosis. I’m replying to this because my cat, Simba, has food sensitivities, has IBD and gastritis and has survived aggressive large cell lymphoma and is cancer free. Below is the link to my post about his story.

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Next Thursday marks two years since the terrible day I received confirmation of the diagnosis. He has been in complete remission and free of cancer since April 2020. He is 15 years and 9 months old now.

If you need any other information other than what I posted I am happy to share my experience. I personally think that Rehmannia Eight with Doxorubicin chemotherapy was a combination that worked, but definitely I would recommend the chemo if you do nothing else.

I had him on palliative care during chemo because I didn’t expect chemo to work for long. The palliative care cocktail is reduced today to keep inflammation down in his digestive tract. I had him on 5mg Prednisolone, 3mg Omerprazole (compounded in a pill) and 12mg Cerenia all daily during the chemo. The whole thing worked very well.

One last thing….as soon as I heard the diagnosis I got my hands on an oral Lomustine chemo pill through Simba’s regular vet and this started on that fast growing cancer quickly, buying us time to get the appointment with a vet oncologist. The regular vet wrote the prescription and I took time off work to fill it at a human pharmacy to make sure I got it right away.
Thank you so much for this! I had combed through the forums before but hadn't found your thread. What an amazing battle you fought with Simba 💜 he is so lucky that you were in his life. It's funny how the timing of his diagnosis / prognosis matches up almost exactly with mine (around early Dec is probably when we'll get the "official" diagnosis back too).

It's also interesting -- the 3 accounts I've seen on this site of cats surviving large cell lymphoma all did involve supplemental holistic therapies, although they all seemed to be different ones in each case.

I do have some questions if you're willing!
  • How big was your Simba? 12mg Cerenia sounds like so much to me -- but my Max is only 8lbs right now (with 10 being a healthy weight for him).
  • Did the holistic vet you were seeing ever talk to you about Neoplasene? I saw this mentioned in other articles, but frankly it sounds "too good to be true" and a bit scary.
  • What is it about Lomustine that they were willing to give it to you in the interim without an oncologist consultation? I'm concerned about this problem myself and will be seeing the vet tomorrow, so will try to ask them then.
  • Was there any resource you found that lists out all the different chemo drugs and the differences between them? Just for LCL, I've seen 6-7+ chemo drugs recommended and am having trouble keeping them all straight. Before your story, I hadn't seen anything about Lomustine, and doxorubicin only seems to be part of some protocols, not all.
Thank you in advance for any insight!! After being disillusioned with so many vets, I feel the need to have as much info going in beforehand so I can advocate for him, whatever happens.
 

hopscotch

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Simba was and is still around 10.5 lbs. The dose of Cerenia is whatever you need to stop the vomiting. Simba didn’t respond to half of the cat Cerenia pill so his doctor gave him half of the dog one, which I imagine is for small dogs too.

I haven’t heard of Neoplasene but it sounds very similar to Oncosupport or the remedy that Nate the Cat was on in the link in my other post. I bought Vitality Science Advanced Immune Restoration online Cat Cancer Support | Advanced Immune Restoration | Vitality Science but by the time it got to me Simba appeared to be improving on the Rehmannia Eight Traditional Chinese Medicine and Doxorubicin injection every three weeks and I didn’t want to mess it up. It appears there are similar things going on in some of these herbal remedies that have found success. I am biased to what I tried because it supported his kidneys and heart too. I got Rehmannia Eight through a different regular vet who had done supplemental vet schooling in Traditional Chinese Medicine, acupuncture and chiropractic for animals.

As far as I know you don’t need a vet oncologist to give Lomustine. I could have done the course of that without an oncologist. Just wear a glove when you touch the pill, do not touch it with your hands. It’s not radioactive. You just don’t want to absorb it yourself when you don’t need it. You will have to do follow up blood cell monitoring through the vet, which I did. Simba felt unwell around that Christmas on the Lomustine when his white blood cells fell a lot, which is why we tried Doxorubicin in early January when his numbers were good for it. He cruised through the Doxorubicin without the same issue. I don’t know exactly what worked, but starting onone thing and changing might have helped to by knocking cancer off guard.

As far as chemo, I trust the doctors. Certain chemos work for certain cancers, and there is a different chemo for small cell than large cell lymphoma. They will always know better than an average person and they see firsthand what works and what doesn’t. Lomustine isn’t the best on its own for this, but it was better than nothing while I had to wait to see an oncologist. You cannot do anything major like doxorubicin without hazmat gear and an oncologist.

The gold standard for this kind of cancer is a regimen of 4 drugs known as CHOP (cyclophosphamide, doxorubicin, vincristine, and prednisone). That was offered to me on a weekly basis for a total course cost of $10,000 (I’m in Canada). I chose the cheaper version to just do doxorubicin every 3 weeks for a total course cost of $3,000. I did the prednisoline daily as part of supportive palliative care. You may have also read about Rituximab for humans but I understand it doesn’t work for cats.
 
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__caitlin

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Simba was and is still around 10.5 lbs. The dose of Cerenia is whatever you need to stop the vomiting. Simba didn’t respond to half of the cat Cerenia pill so his doctor gave him half of the dog one, which I imagine is for small dogs too.

I haven’t heard of Neoplasene but it sounds very similar to Oncosupport or the remedy that Nate the Cat was on in the link in my other post. I bought Vitality Science Advanced Immune Restoration online Cat Cancer Support | Advanced Immune Restoration | Vitality Science but by the time it got to me Simba appeared to be improving on the Rehmannia Eight Traditional Chinese Medicine and Doxorubicin injection every three weeks and I didn’t want to mess it up. It appears there are similar things going on in some of these herbal remedies that have found success. I am biased to what I tried because it supported his kidneys and heart too. I got Rehmannia Eight through a different regular vet who had done supplemental vet schooling in Traditional Chinese Medicine, acupuncture and chiropractic for animals.

As far as I know you don’t need a vet oncologist to give Lomustine. I could have done the course of that without an oncologist. Just wear a glove when you touch the pill, do not touch it with your hands. It’s not radioactive. You just don’t want to absorb it yourself when you don’t need it. You will have to do follow up blood cell monitoring through the vet, which I did. Simba felt unwell around that Christmas on the Lomustine when his white blood cells fell a lot, which is why we tried Doxorubicin in early January when his numbers were good for it. He cruised through the Doxorubicin without the same issue. I don’t know exactly what worked, but starting onone thing and changing might have helped to by knocking cancer off guard.

As far as chemo, I trust the doctors. Certain chemos work for certain cancers, and there is a different chemo for small cell than large cell lymphoma. They will always know better than an average person and they see firsthand what works and what doesn’t. Lomustine isn’t the best on its own for this, but it was better than nothing while I had to wait to see an oncologist. You cannot do anything major like doxorubicin without hazmat gear and an oncologist.

The gold standard for this kind of cancer is a regimen of 4 drugs known as CHOP (cyclophosphamide, doxorubicin, vincristine, and prednisone). That was offered to me on a weekly basis for a total course cost of $10,000 (I’m in Canada). I chose the cheaper version to just do doxorubicin every 3 weeks for a total course cost of $3,000. I did the prednisoline daily as part of supportive palliative care. You may have also read about Rituximab for humans but I understand it doesn’t work for cats.
Thank you 🙏 🙏 this is so helpful. I'm trying to find a reliable holistic vet in my area now -- at least just to have a conversation, it couldn't hurt.

In any case, Max will be starting on a high dose of prednisolone tomorrow (replacing the budesonide he was on until now) while we wait for the cytology report. After the report, hopefully an oncologist appointment ASAP -- and if there's a wait for that, I will be asking them about Lomustine.

Thank you for all your help and I'll continue to provide updates!
 
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__caitlin

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Good luck with everything!
Quick update: So we're still waiting for the cytology report, which I'm hoping will come in by this Tuesday or Wednesday the latest. In the meantime, I did manage to get an oncologist appointment for the following Wednesday, December 8th. As of last Friday, Max switched from budesonide to 7.5mg daily prednisolone. He seems to be feeling a little better on it. Now everything is just riding on that report -- and that the cancer doesn't metastasize fast enough before we can start chemo.

Do you think ~1 week between diagnosis to oncologist appointment is long enough that I should ask the vet about preemptively starting Lomustine? I'm not sure what your wait time for the oncologist was (I imagine much longer). In theory I feel like waiting a week should be the right timeline, but I just have no idea what's going on with the tumor in there :/

Also, have you heard of this study at all recommending against prednisolone as a precursor to LCL chemo? I was pretty confused reading that since it seems like prednisone is part of the gold standard treatment across the board for this type of lymphoma -- and with the prevalence of cats with IBD prior to getting diagnosed, so many cats are already on prednisolone before getting diagnosed and treated. But do you think I should be considering taking him off the pred at all? (Not sure if any other corticosteroid would have the same problems but it seems like it might.)
 

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I totally understand the need to jump on top of this - I was there! This is a fast moving cancer. They told me Simba had 4-6 weeks so time matters. I don’t know how soon you are catching this, but you're doing well to get an oncology appointment on Dec. 8. I had to wait from Dec. 3 (diagnosis) until Dec. 16 for the first oncologist appointment.

For context, I asked for the endoscopy around Nov. 20, had to wait until Nov. 28 for it, then didn’t get all the results from it until Dec. 3. I hummed and hawed about whether to do chemo until Dec. 6. I got the Lomustine in the afternoon on Dec. 6 and gave it to Simba that evening. It was stressful and I wanted someone else to do the chemo from that point on. So if you look at all the wait time, it was Nov. 20 until Dec. 6 that I started chemo. Though I think Nov. 20 was close to when cancer began if not a little earlier. People usually do not catch it right away which effects the stats for success.

I started Simba on 5mg Prednisolone right away on Dec 3. I am not a doctor but I think having your cat on Prednisolone is the right thing to do. You are on a higher dose so it might even be better while you wait. I haven’t heard of that study, but I would not take a cat off daily Prednisolone. It’s all you’ve got to slow the tumour down. Why stop? I kept up the 5mg daily oral Pred during the entire chemo adventure and had success In the end. I would not change what I did if I was faced with this again.

Regarding whether to start Lomustine now, that is a question best left for a vet or the oncologist. Will the oncologist comment on whether it’s best to get Lomustine on board now as a hedge? If you do start it you won’t be able to do anything else until the first Lomustine finishes it’s course 4-5 weeks later. That means that if you want to start doxorubicin or CHOP on Dec. 8 you’ll have to wait until the beginning of Jan.

Its tough to wait but its really best to ask a vet or the oncologist. My oncologist was fine with me having started Lomustine. When Simba started Lomustine I did not know I was going to do Doxorubicin later and didn’t know it would delay the start of Doxorubicin because you only do one at a time.

One question I have regarding the report is are you asking them to do supplemental staining to determine if it is T-cell or B-cell lymphoma?You should be able to add it in and pay now so you don’t lose any more time. B-cell is more common and I understand the choice of chemo to use changes based on which one Max has.

Max is a beautiful boy. I love Tuxedo cats. He has the cutest toe beans, too! 😻
 
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__caitlin

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Thank you for all this info 🙏 I just called them to ask whether the report includes that supplemental straining you mentioned -- and they had absolutely no idea what I was talking about. Really disheartening. If the report doesn't come in by tomorrow, I guess I will call again and maybe try again to see whether I can get a clear answer.

Do you mind if I ask what was difficult about administering the Lomustine? That's really good to know that I'd have to be committing to the 4-5 week course. What was stressful about it -- was it difficult to administer? A lot of side effects?
 

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I’m sorry to hear about that. Perhaps ask if they can find out if the report will also contain information on whether it’s B-cell or T-cell. If they don’t know there’s nothing wrong with them asking the lab so they can answer. The oncologist will want the info.

I gave Lomustine like a regular pill. It’s refrigerated. I put on a rubber glove that I threw away after, opened his mouth and popped it in. I may have got it a bit wet so he didn’t choke on it. I don’t remember.

I didn’t know what was going to happen when I administered it, but that he would definitely die if I didn’t do chemo. About three weeks after you give Lomustine the white blood cells will bottom out and it can feel unpleasant. They need a vet check and monitoring around this point because it is risky and a vet can intervene if things go off the rails. I saw him get sick around Christmas so it was stressful for me to think of giving him another pill that would make him sick again. By sick I mean he didn’t want to do much, got cold waxy ears, didn’t want to eat as much etc. I wanted the oncologist to be in the drivers seat with treatment because it was all quite enough emotionally for me.
 
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__caitlin

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This week’s update: unfortunately the timing did not work out to start Lomustine. The cytology report (which did confirm LCL) came too late (and I did order the supplemental straining at that point); the vet then wanted to speak to an oncologist before recommending anything. She didn’t speak to them until today — by this point, the oral chemo would arrive probably the day before his oncology appt so there’s no point.

This week he was doing pretty poorly from what I now realize was constipation, but it took me a couple days to realize it because he was still pooping (just showing every other symptom of constipation other than that). After a laxative, he seemed to be feeling better — except that I woke up today and saw a noticeable bulge of fluid on his right side abdomen near his mass.

I brought him back to the vet. They weren’t able to do an ultrasound, but to my surprise she said honestly she isn’t super concerned about it. He doesn’t have a fever, his colon feels normal, etc. She thinks the bulge is the effusion that comes with his cancer and that there may be no other option except to just grit our teeth until his Wed oncology appointment. Max has definitely declined over the past week, but with the palliative care (anti-nausea and steroids) doesn’t seem to be as bad now that the constipation is better.

I am however feeling a bit skeptical. Doesn’t severe effusion typically mean that the cancer has spread throughout his entire abdomen? The vet didn’t seem to think this warranted giving up and canceling the chemo. She also didn’t seem to think it was imperative that I schedule an ultrasound to potentially further diagnose and/or drain the fluid. She just said that if he does get worse over the weekend to bring him to an ER for an ultrasound at that point, but that for now he seems status quo. Part of me is paranoid that she actually thinks this is a hopeless case but doesn’t have the guts to tell me (except that I’ve never known a vet to mince words when they thought an illness was too advanced to pursue treatment).

Does this sound right to you? Between now and Wednesday, are there other things I should be asking for in response to the fluid bulge? Or is the vet correct that this doesn’t a) necessarily warrant giving up and putting him down, but b) also doesn’t warrant doing much until the Wed appt?
 
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