Willy might have cancer / high-grade lymphoma Treatment thread

[FeralHearts]

I'm glad you got the actual report. I've learned from past mistakes to always request a copy of what is wrong, if I'm concerned things aren't improving.

I'm going to second this. Also always get a copy of the full vet records (notes) as well. Have them with you when you go to the specialist. Have them with you if you ever need to go to ER or an off hours clinic.

I'll give you a couple of examples: (and I can tell you there are more)

Mia - when she had a UTI (BAD one) in March. When I read the vets notes, someone had told the Doctor that she was peeing outside the box. Incorrect. She wasn't peeing at all. Big difference.

BH - She had to have a biopsy done on her foot. What I wasn't told and read in the notes after was that she stopped breathing and had to be pulled from anesthesia. After I read that, I had it flagged on her records so it comes up right away that she had a bad reaction.

I started to get the vet notes after an old Vet of mine failed to tell me that one of my dogs had the start of Lymphoma. I found out in the ER when she was dying. Not a word had been said to me. You can imagine the words I had with that vet. (and yes - I never went back to them again.)

People get busy, they think they heard right, they think they've told you something and haven't, or someone on the phone translates it wrong to the doctor, or even a simple typo. We're human and errors can happen with animals and people.

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[cmshap]

I'm going to second this. Also always get a copy of the full vet records (notes) as well. Have them with you when you go to the specialist. Have them with you if you ever need to go to ER or an off hours clinic.

Great advice. I've printed out a copy of the whole thing, as well as saved the PDF file on my phone.

Interestingly, these vet records actually contain more detail than I expected about the interactions between the vet and myself. For example, they describe the phone call immediately after Willy's biopsy, when she told me that the procedure went well.

"Owner asked about timeline for biopsy results. He was disappointed that it could take a week or more; I advised him ..."

There are quite a few notes characterizing our conversations, which I kind of understand now after reading your examples of miscommunications. They seem to want to be thorough in documenting all communication between vet and pet owner.

If anything, that tells me this particular office is paying attention to detail, so I take it as a good thing.

 

[Kwik]

I finally got the actual medical records file from my vet -- for some reason it took a long time.

My vet only told me "lymphoma" over the phone, but now that I am reading the report, I see that it's large-cell lymphoma... which is very concerning.

Here is what the histopath report says:

SOURCE: A) Ear B) Neck MICROSCOPIC FINDINGS: Lymphoma, large cell (x2)
SPECIMEN MARGINS: Evaluation of margins is not applicable in this case (incisional biopsy). COMMENTS: Both specimens in this submission contain a large cell lymphoma, possibly arising from regional lymph nodes, although no recognizable lymph node architecture is observed in these specimens. Staging is recommended. MICROSCOPIC DESCRIPTION: 2 bisected samples: Similar findings are present in both tissues. Infiltrating fibroadipose tissue is a nonencapsulated, poorly demarcated, and densely cellular neoplasm. The neoplastic cells are closely arranged in sheets in a pre-existing fibrovascular stroma. The neoplastic cells are round, with clear cell borders, small to moderate amounts of amphophilic and flocculent cytoplasm, a centrally located, oval to reniform nucleus, finely stippled chromatin, and up to 2, small, basophilic nucleoli. Anisocytosis and anisokaryosis are mild to moderate. The nuclear size measures greater than 2 red blood cell diameters (large cell). Mitoses are frequent, up to 6 per single 400x HPF. Scattered throughout the mass are numerous tingible body macrophages.

I'm going to share with you what my own oncologist once said to me when my Dad was diagnosed with a very aggressive ( fast moving,large cell)cancer..... I was beside myself because my Dad was not here in Florida with my oncology team- they ( NY )gave him a terrible prognosis and didn't even want to treat him

He said " So? Aggressive cancers spread quickly but they also die quickly with aggressive treatment.... small cell is actually harder to treat....and look at YOU ,youre a walking Miracle!

The point I'm making is this Doctor had a completely different perspective and looked at each individual patient as his patient that he would do everything possible to treat,hopefully cure- he didn't care about statistics...I'm not supposed to be here according to statistics!Let's see what your oncologist has to say

 

[FeralHearts]

Great advice. I've printed out a copy of the whole thing, as well as saved the PDF file on my phone.

Good and keep getting updated copies as you go forward.

There are quite a few notes characterizing our conversations, which I kind of understand now after reading your examples of miscommunications. They seem to want to be thorough in documenting all communication between vet and pet owner.

If anything, that tells me this particular office is paying attention to detail, so I take it as a good thing.

Also a very good sign... but don't get complacent on it. My vets are very, very good and note well. Mia's still had an error as did another. Worse - when she was diagnosed there were a lot of new people and transitions happening (I didn't know that at the time)... a lot of things got missed, weren't noted - and it appears some of my calls to the vet of her being in pain - didn't reach the vet properly. It was a perfect storm for things to go wrong. Trust is good... but no one is perfect. Even the best of the best can error and this is not the time for it. XOXO

So be aware - even some of the best can make errors etc. Keep on it. I think you will though. XOXO

I'm going to share with you what my own oncologist once said to me when my Dad was diagnosed with a very aggressive ( fast moving,large cell)cancer..... I was beside myself because my Dad was not here in Florida with my oncology team- they ( NY )gave him a terrible prognosis and didn't even want to treat him

He said " So? Aggressive cancers spread quickly but they also die quickly with aggressive treatment.... small cell is actually harder to treat....and look at YOU ,you're a walking Miracle!

The point I'm making is this Doctor had a completely different perspective and looked at each individual patient as his patient that he would do everything possible to treat,hopefully cure- he didn't care about statistics...I'm not supposed to be here according to statistics!Let's see what your oncologist has to say

Exactly.

 

[cmshap]

I appreciate all the positivity in this thread. I have been having a really hard time with this today, even though Willy is still fine and nothing has taken a turn for the worse. I just keep feeling guilty whenever I look at him... like I wish I could have possibly noticed this sooner, and I wish I had more financial resources to get him whatever treatment he needs, etc. (so far, the money involved is doable, but I have no idea what to expect and I am dreading having to make a call if the money becomes too much).

I wish I could share Willy's optimism with life... he's still acting like nothing is wrong. I wish it would just rub off on me and I could feel more at ease.

I am capable of optimism, but it is coming and going as I process this whole situation, and tonight in particular I happen to be struggling.

Just venting a little bit... I really do appreciate everyone who is actively following this thread and contributing feedback, comments, questions, etc. It does help a lot.

Edit: But Willy being happy is my ultimate goal, so I am truly happy that he still knows nothing about his disease. The situation would be much worse if he was even feeling a little discomfort, but so far he doesn't seem to have any discomfort whatsoever.

 

[Kwik]

This community is incredible cmshap - I came from a Christian Ministry Forum where I've become wearied by division-trust me,it has done nothing that could shake my Faith in my Lord but my faith in humanity was disappointing to say the least....and then I came here to TCS

Here I've found LOVE in its truest form and we've all found each other because we love the most beautiful,wonderful ,magnificent little bundles of furry JOY.... those of us thst share that great passion for our feline friends and family are a very special breed- we are FAMILY! You are loved and we are all here to support and encourage you,to listen to you vent,to catch a falling tear and to celebrate our triumps-yes,through it all..... no doubt each one of us love Willie as our own- our family

Stay the course my friend,stay the course'-you are not alone

 

[cmshap]

I'm anxiously awaiting to hear how the little paper shredders appointment goes on Tuesday.

Me, too. In the meantime, Willy inspects his handiwork...

 

[cmshap]

I had my first appointment with my new veterinary oncologist today, and I love her. She gave me the most comprehensive and understandable explanation of feline lymphoma, and its treatments, that I've ever heard.

And she gave me three different options for treatment.

(1) Prednisolone only. The idea behind this option is if the pet owner really can't afford more comprehensive treatment, and/or if there are specific complications with bringing your cat into the vet. Like if they were to get extremely stressed out by regular vet visits (my cat doesn't, but I was glad to hear that she cares so much about pet stress levels).

(2) Prednisolone at home, plus chemotherapy over the next 5-6 months with lomustine. This is the option I currently have elected to pursue. I've already started him on prednisolone at home (and I am very good at pilling him so this will be regimented). I will be bringing him in once a month for lomustine, plus blood work checkups and general exams, which will be about $500 a shot for 5-6 times. I have decided to swing that, based on the potential benefits.

(3) A new, comprehensive treatment that goes by the acronym CHOP, which was developed at UW-Madison (where I went to school, actually). This is considered the best treatment for high-grade feline lymphoma currently. The problem is that it would cost almost $10k in the end, without significantly adding to Willy's lifespan (and I just couldn't afford that anyway, even if I wanted to).

Here is a link for anyone interested:
Treatment of feline intermediate to high-grade lymphoma with a modified university of Wisconsin–Madison protocol: 119 cases (2004–2012)

Like I said, I really like this doctor and the treatment plan I am choosing, despite being rather expensive. My ultimate goal is to preserve Willy's quality of life, so if he responds negatively, or it doesn't work, I may reevaluate later. But so far, prednisolone + lomustine is the active plan.

 

[catloverfromwayback]

That's very good news! Here's hoping the treatment works for him.

 

[Kwik]

I had my first appointment with my new veterinary oncologist today, and I love her. She gave me the most comprehensive and understandable explanation of feline lymphoma, and its treatments, that I've ever heard.

And she gave me three different options for treatment.

(1) Prednisolone only. The idea behind this option is if the pet owner really can't afford more comprehensive treatment, and/or if there are specific complications with bringing your cat into the vet. Like if they were to get extremely stressed out by regular vet visits (my cat doesn't, but I was glad to hear that she cares so much about pet stress levels).

(2) Prednisolone at home, plus chemotherapy over the next 5-6 months with lomustine. This is the option I currently have elected to pursue. I've already started him on prednisolone at home (and I am very good at pilling him so this will be regimented). I will be bringing him in once a month for lomustine, plus blood work checkups and general exams, which will be about $500 a shot for 5-6 times. I have decided to swing that, based on the potential benefits.

(3) A new, comprehensive treatment that goes by the acronym CHOP, which was developed at UW-Madison (where I went to school, actually). This is considered the best treatment for high-grade feline lymphoma currently. The problem is that it would cost almost $10k in the end, without significantly adding to Willy's lifespan (and I just couldn't afford that anyway, even if I wanted to).

Here is a link for anyone interested:
Treatment of feline intermediate to high-grade lymphoma with a modified university of Wisconsin–Madison protocol: 119 cases (2004–2012)

Like I said, I really like this doctor and the treatment plan I am choosing, despite being rather expensive. My ultimate goal is to preserve Willy's quality of life, so if he responds negatively, or it doesn't work, I may reevaluate later. But so far, prednisolone + lomustine is the active plan.

It's an excellent plan- I think this is GREAT news and I'm counting on Willie responding well to his treatment.Being in his home with his Daddy is what is best for Willie ,better than any $10k treatment option!He is a total Daddys boy and you made a wise decision.....

I'm so happy you love this Vet- how very Blessed to have not 1 but 2 super special Vets for Willie... and it's good knowing my little "nephew"did not have a stressful day

Give Willie a giant hug from his Auntie in Fla ( there's one for you too)

Continued prayers

 

[white shadow]

cmshap - could you outline the fine print inside that "Prednisolone at home" ?
.

 

[Antonio65]

Great advice. I've printed out a copy of the whole thing, as well as saved the PDF file on my phone.

Great!
I have hundreds of PDF files on my phone. And to make sure nothng bad happens with my technology (I love technology, but it fails me too often), they are all saved in Google Drive too, so that I can access them from any computer in the world.

 

[cmshap]

cmshap - could you outline the fine print inside that "Prednisolone at home" ?

I have a script for prednisolone 5mg tablets which I am giving him once a day. I started as soon as we got home from the appointment yesterday.

 

[fionasmom]

It is great to hear that you like the oncologist and have decided on a protocol. CHOP is used in humans and has been used more extensively in dogs, as I believe your article also states, but I agree that the survival times in cats is not impressive enough to consider it. In the CHOP protocol, patients actually take their own pred at home, which is an interesting parallel to what you are doing with Willy.

The vet will administer the lomoustine at the hospital?

 

[cmshap]

The vet will administer the lomoustine at the hospital?

Thanks for the info about the CHOP protocol. I really wish it wasn't so extraordinarily expensive.

Yes, so they will administer the lomustine once a month when I bring him in, and the visit will also include an exam and blood work, from what I understand.

 

[white shadow]

.
You might be interested in some reliable, plain-language details about corticosteroids (for a broader understanding etc.)....I'll give you a couple, this and # 2. The Veterinary Partner is a superb site - in there, you'll see a link to an article on feline lymphoma and that can link to a piece about Lomustine. - ***Correction: the lymphoma article is here.

Your reply suggests that you'll be dosing Willy once a day. On the forum, we've sometimes seen Vets recommending splitting that dose and giving 1/2 twice a day. In the first link above (to the 'Tanya" site), there's a reference to a paper that would support that idea - here's the snippet:

Once- vs. twice-daily dosing​

Initial studies suggested that cortisol secretion in cats followed a circadian rhythm and that evening dosing would be preferred, as it would most closely mimic this natural rhythm.11 However, subsequent larger studies failed to document a consistent pattern of cortisol secretion in cats, indicating that the time of administration is probably not important.12,13 Likewise, no evidence of an advantage exists in dividing a once-daily glucocorticoid dose into two doses. Because it can be difficult to administer pills to cats, giving glucocorticoids once daily is a reasonable treatment plan. A possible exception occurs with higher, immunosuppressive doses as some authors think dividing the dose can reduce gastrointestinal irritation.​

ref: Glucocorticoid use in cats​

That might be a point to take up with the prescriber.

It also sounds like he'll be seeing the oncologist for the Lomustine. You might consider asking your own Vet if she could on some of those appointments - that would most likely save you some money - and she could arrange it for you.


There are some online communities of folks whose primary focus is managing their cat's lymphoma/cancer journey. One has been active since 1999, and all of them have a wealth of collective best-practice experience, knowledge and supportive skills that 'newbies' can draw from. If you're interested, post back and I'll detail them.

Hoping something there may help!


[edited to correct VIN's lymphoma article link]

 

[cmshap]

You might be interested in some reliable, plain-language details about corticosteroids (for a broader understanding etc.)....I'll give you a couple,
[...]
There are some online communities of folks whose primary focus is managing their cat's lymphoma/cancer journey.

Thank you for all the good advice in your above post. I will take all of it into account and discuss it with my vets.

And, of course, I would love any links you can provide for online communities of people dealing with this. I'm trying to soak up as much information as I can right now, so that I have a better understanding of what's going to happen as I move forward.

 

[cmshap]

On a similar note, I am wondering if we want to change the title of this thread, for the community, if possible. Rather than "Willy might have cancer -- Treatment thread," something like "Willy's high-grade lymphoma -- Treatment thread." I am thinking that this thread could be more helpful to more people in the future if the title were changed, so that it's easier to find by someone searching for this topic.

And I will be posting more updates over time in here, so I want to keep it going under the best title that may help other people and their cats.

If there is a mod reading this, I'm hoping this is possible to do. Also, I am writing this as a public post in case anyone else has feedback on my proposal.

 

[Kwik]

Thank you for all the good advice in your above post. I will take all of it into account and discuss it with my vets.

And, of course, I would love any links you can provide for online communities of people dealing with this. I'm trying to soak up as much information as I can right now, so that I have a better understanding of what's going to happen as I move forward.

Just please,always keep in mind the specifics of the particular lymphomas are different as each patients response,tolerance and reactions to treatment

I'm a human but being a cancer patient is where I'm coming from,just like Willie( if he could speak).....I have hair down past my waist- I had a very aggressive,terminal Stage 4 cancer... they were not hoping to save my life with chemo but perhaps slow the progression- that type of chemo is very aggressive and I was prepared to lose my hair,not a single hair on my head was affected by it-plus I lived,despite all odds,all the facts and statistics for my type of cancer.... but you see,each individual ( any species) has a unique DNA,genetics......and now this is a much bigger part of the equation which is the focus of the latest research & studies.....

My advice to you is take what is GOOD and leave the rest, it's wise to be prepared and well informed but it is even wiser to not expect what may not happen-take one day at a time and focus on thst day- it's the only one you can be sure of

My hope is that you remain positive,I used to sit with a group of about 20 in the infusion room,everyday,4 hrs a day and watched everyone's hair falling out and they used to say " look at you with all thst hair" and I'd reply- "yes,,for today and laugh".. my point is of course not about the hair,it is about my DNA and my perspective .... not one of us,including the healthy staff administering the chemo are guaranteed tomorrow- so keep your head in TODAY- the mind is a very powerful thing and animals pick up on our state of mind more than we could ever realize.... and I think if Willie could speak he'd tell you "Don't worry Daddy,I love you"

Sorry,I'm probably rambling but the subject of battling cancer is a very personal one for me and as a human I only wanted to surround myself with positive people and not hear about " what's going to happen" when I was advised to " get your affairs in order"....Joy,Peace,Hope,Love are essential Rxs to be taken many times a day...." as needed"

 

[mani]

On a similar note, I am wondering if we want to change the title of this thread, for the community, if possible. Rather than "Willy might have cancer -- Treatment thread," something like "Willy's high-grade lymphoma -- Treatment thread." I am thinking that this thread could be more helpful to more people in the future if the title were changed, so that it's easier to find by someone searching for this topic.

And I will be posting more updates over time in here, so I want to keep it going under the best title that may help other people and their cats.

If there is a mod reading this, I'm hoping this is possible to do. Also, I am writing this as a public post in case anyone else has feedback on my proposal.

It's important to keep the original title as that is how the thread starts. I've added the rest.
If you do need to contact a mod it's much better to just flag it (I can see you've done that as well) rather than post about it.