Small Cell Lymphoma, Please Advise

[aryia]

Hello everyone,
my 11-yr old girl Haylie was just diagnosed with small cell lymphoma. We already had her on prednisone since her endoscopy last week, but I'm low-key freaking out at the cost of chlorambucil (Leukeran) @ $40/pill that needs to be given every other day.

What has your experience been with small cell lymphoma?

There seems to be a compounded chlorambucil which is much more affordable, anyone have experience in this regard?

 

[iPappy]

Hi,
I don't have any experiences with SCL but other members here do. Bumping up your post, and hopefully they will give their input.
Hugs to you and Haylie.

 

[artiemom]

Hi, my guy was diagnosed with SCL, level II; last May.
Geoffrey is on a steroid (Budesonide), Zofran, Cerenia-- for vomiting, when needed; and Chlorambucil.
I get the Budesonide and the Chlorambucil from Wedgewood Compounding pharmacy.

Brand name Leukeron, is highly expensive. The generic version, Chlorambucil is less. I order 40 tablets at a round about cost of $100. The price includes next day delivery. It is on 'ice'; packed really well.
You need to keep the chlorambucil in the refrigerator.

Your Vet can send the prescription to whichever compounding pharmacy you choose: Wedgewood, Stokes, or even Chewy. You then call them, with billing information, and they will send it out. Check out their websites... Wedgewood is funny that way-- no prices listed; but Call.. they are helpful. My Vet automatically uses Wedgewood.

What I would suggest, before your Vet calls the script in; is to decide which option you want: Chew treats-- like Silly Putty, liquid, capsules.
I get the capsules. I did try the chew treats, which were a major fail. It was sticky, like a pice of wet gum. I found the capsules much better.
The liquid is 'iffy" --- due to the nature of giving liquid meds to cats, and the precautions on the chemo. You do not want to waste any of it..

As far as handling the chemo: The instructions will frighten you! I have gotten lax on them. I keep the container in a small tray in the refrigerator. I use gloves when getting the pill gun (I find it easier to use for meds), and a 10 cc baby feeding syringe filled with water, as a chaser. I keep the gloves on as I grab Geoffrey, and pill him.
I put the syringe and loaded pill gun on a paper towel as I gather up Geoffrey.
After pilling him, I take off the gloves, and wash my hands..
That is it.. the entire process.

The chemo is a very small amount. I give it every other day.

I do keep an extra set of Chemo Pill gun and syringe, separate from what I use for his regular meds.

I wish you luck and love.... (((Hugs)))

 

[Kflowers]

This page will lead you to other threads about SCL, if you want to read about other's experiences with it. artiemom has some of the most detailed threads about it. You need to know as much as possible about what you and Haylie are facing to make sound decisions. As you are making your decisions about what to do, never forget that with each thought you are wrapping your kitty in love and working to make the best decision for her in your particular circumstances. Your cat knows you love her.

Search Results for Query: SCL | TheCatSite

 

[artiemom]

This page will lead you to other threads about SCL, if you want to read about other's experiences with it. artiemom has some of the most detailed threads about it. You need to know as much as possible about what you and Haylie are facing to make sound decisions. As you are making your decisions about what to do, never forget that with each thought you are wrapping your kitty in love and working to make the best decision for her in your particular circumstances. Your cat knows you love her.

Search Results for Query: SCL | TheCatSite

Yes, it is a very hard, emotionally difficult road.. SCL cats-- in the GI system usually can live up to 2-4 years once diagnosed. it all depends on. early diagnosis, and stage of SCL.
Lots of things to consider.

The steroid, Prednisolone or Budesonide can cause side effects: lethargy, spaciness, etc. That is why we changed from Pred to Budesonide. Steroids in general can cause diabetes.. and anemia, and some renal disease. These are things you
need to be aware of. Always keep Cerenia on hand for vomiting-- much easier than running to the Vets for an emergency supply.
The Chemo, Chlorambucil, is not supposed to cause much side effects, at a low dose.. but... it can.
Vet visits are usually every 3 months for blood tests..

The entire cost of treatment for SCL is expensive-- even with insurance. After having a previous cat, Artie, who was very sick with other diseases..He was so good, that I kept him around, for me... not for him.. his life revolved around meds.. My life revolved around medicating Artie..

I have decided that You have to find when and where your limits are. Geoffrey is getting 2 morning meds, Chemo every other day, 2 nightly meds.. a few times a week of laxatone, and miralax mixed in with his syringe chaser water, daily

This is a lot of meds. It seems his daily life revolves around meds.. The past month or so, I have found that he is tired of the constant medicating.. and is slightly protesting, and hiding from me when he feels it is time for meds... he slouches down and tries to sneak away, even when it is not time for meds. It hurts my heart, because he is such a love bug. He has become much more needy with cuddles, also. He always wants his Mama when he hurts.

Right now, I am feeling that the Mirataz-- appetite stimulant, is what is keeping Geoffreys weight high and stable. However, I have noticed, over the past week, it is not effective as long as it used to be. His weight is more than good, but I am having to take the food over to him; unless the Mirataz is recently applied; it does not seem to last into the next day.

I do not say this lightly.. I had a pretty bad case of asthmatic bronchitis which morphed into Pneumonia, in December.
I stayed out the the ER and hospital because of Geoffrey. I could not find anyone to feed him, because I was sick and the house was full of germs.. and absolutely no one would medicate him. I realized Geoffrey would severely suffer if I were to be hospitalized. It kind of opened up my eyes...and hurt my heart.
You need to find a game plan.

Right now, we are going through a very low time..Despite all the meds, Geoffrey has had 2 episodes of vomiting Bile.. Which he has never done, in his entire life. His vomits are usually food.. never bile.. What is causing this, I do not know... I can conjecture.. but..... I have also found that Geoffrey is getting more and more hard stools. When he does not poop, daily, he gets sick. weird.. but the bile is tightening. I never had a cat who vomited bile, without food.. and bright yellow.

Sorry for being so maudlin... this is about you and your baby, not mine..

I would advise you to have your baby seen by an IMVEt.. they are well versed on many issues. And possibly an oncologist.
I just use an IMVet. I have done research and have joined a couple of lymphoma groups on Facebook. I found difficulty dealing with the web based small cell lymphoma website. I never really joined it. I found the administrator demanding and justifying a 'certain' treatment-- to the extent of insisting I print up articles and give them to my vet about pulse dosing of chlorambucil. That is when I said good bye to that group.

It does seem that most SCL GI babies end up with anemia and/or diabetes.. Just be forewarned. But they can live 2-4 yeas after diagnosis! That is amazing.. remission is possible, but it does return.

again... love...

 

[FeebysOwner]

I don't have much to offer but do want to add a couple of thoughts. First, get an oncologist involved if you haven't already, and talk to them about pulse chlorambucil. Many are now treating cats with this approach, which generally means giving the chemo less often, but I do think the dosage is a bit higher each time. It seems to be helpful in reducing side effects - and it gives both you and your cat a break from such frequent doses.

It is the Pred that is inclined to provoke diabetes, usually only when given long-term, however that is not the case for some cats. Budesonide is less inclined to cause diabetes, and it is more focused on the digestive tract (so not as good for other types of cancer).

Also, if you do need anti-nausea meds and Cerenia is recommended but you don't find it working so well, you can ask about ondansetron. Cerenia is typically thought to work better to prevent vomiting, although it does have anti-emetic properties. The ondansetron seems to be geared more towards reducing nausea.

 

[NekoM]

If your in the US some advice that may be good to know - if your Vet will write a prescription, pet meds are much cheaper to buy from the Canadian online pharmacy’s. I looked up an example for you : Leukeran 2mg 25 Tab = $75. The only stipulation is you have to buy a 90 day supply

 

[aryia]

Thank you for all the replies everyone and sorry that it's taking me a while to reply. Even though everyone is so supportive somehow checking this site makes the situation more real and I'm still trying to process it. I say I don't do favorites but Haylie has been with me since college, and she is that one special cat that knows my feelings, will be there for me when I'm sad, and will snuggle with me for hours and trusts me solely... which make all the decisions so much harder.

Hi,
I don't have any experiences with SCL but other members here do. Bumping up your post, and hopefully they will give their input.
Hugs to you and Haylie.

Thank you <3 I appreciate it.

Hi, my guy was diagnosed with SCL, level II; last May.
Geoffrey is on a steroid (Budesonide), Zofran, Cerenia-- for vomiting, when needed; and Chlorambucil.
I get the Budesonide and the Chlorambucil from Wedgewood Compounding pharmacy.

Brand name Leukeron, is highly expensive. The generic version, Chlorambucil is less. I order 40 tablets at a round about cost of $100. The price includes next day delivery. It is on 'ice'; packed really well.
You need to keep the chlorambucil in the refrigerator.

Your Vet can send the prescription to whichever compounding pharmacy you choose: Wedgewood, Stokes, or even Chewy. You then call them, with billing information, and they will send it out. Check out their websites... Wedgewood is funny that way-- no prices listed; but Call.. they are helpful. My Vet automatically uses Wedgewood.

What I would suggest, before your Vet calls the script in; is to decide which option you want: Chew treats-- like Silly Putty, liquid, capsules.
I get the capsules. I did try the chew treats, which were a major fail. It was sticky, like a pice of wet gum. I found the capsules much better.
The liquid is 'iffy" --- due to the nature of giving liquid meds to cats, and the precautions on the chemo. You do not want to waste any of it..

As far as handling the chemo: The instructions will frighten you! I have gotten lax on them. I keep the container in a small tray in the refrigerator. I use gloves when getting the pill gun (I find it easier to use for meds), and a 10 cc baby feeding syringe filled with water, as a chaser. I keep the gloves on as I grab Geoffrey, and pill him.
I put the syringe and loaded pill gun on a paper towel as I gather up Geoffrey.
After pilling him, I take off the gloves, and wash my hands..
That is it.. the entire process.

The chemo is a very small amount. I give it every other day.

I do keep an extra set of Chemo Pill gun and syringe, separate from what I use for his regular meds.

I wish you luck and love.... (((Hugs)))

Thank you for your insight. First of all I wish you and Geoffrey well and hope he will have many years ahead of him <3

I had some questions for you:
Is there any reason for the Budesonide instead of Prednisone?
Does the pill gun come with the first delivery or do I need to separate order it? Is it possible to just pop the tablet into her mouth? I will be gone for 12 days starting March 8 and a combination of friends and my boyfriend will be watching the animals meanwhile. Unfortunately I cannot cancel or delay this trip since I have not seen my family in 6 years due to COVID. Any suggestions as to make the process easier so someone not so hands-on with animals could dose her? She has had a voracious appetite despite her symptoms and takes her B12 as a liquid supplement in her food, might that be possible with the chlorambucil for 12 days?

She has almost no symptoms at the moment, only the occasional clear liquid vomit with a little bit of hair in it. She lost almost 1 lbs which I initially thought was due to stress and food sensitivities from the new kittens and vomited undigested food and hairballs very frequently. Since I gave her a separate room and switched her to a limited ingredient all raw diet she has gained her weight back and only throws up a little clear liquid with the fur every now and then. I'm hopeful at this point, but I'm scared that putting her on the chemo will cause issues. How will we know if she is in remission and how long does remission typically last?

 

[aryia]

This page will lead you to other threads about SCL, if you want to read about other's experiences with it. artiemom has some of the most detailed threads about it. You need to know as much as possible about what you and Haylie are facing to make sound decisions. As you are making your decisions about what to do, never forget that with each thought you are wrapping your kitty in love and working to make the best decision for her in your particular circumstances. Your cat knows you love her.

Search Results for Query: SCL | TheCatSite

Thank you <3 I've been browsing through some of the threads. Each situation is so different I never know what to expect. I just wish the vet costs weren't so high.. it has taken almost 4000 just to have her diagnosed and while it's not the money I care about, I'm just really worried that at some point it will become infeasible.

 

[aryia]

Yes, it is a very hard, emotionally difficult road.. SCL cats-- in the GI system usually can live up to 2-4 years once diagnosed. it all depends on. early diagnosis, and stage of SCL.
Lots of things to consider.

The steroid, Prednisolone or Budesonide can cause side effects: lethargy, spaciness, etc. That is why we changed from Pred to Budesonide. Steroids in general can cause diabetes.. and anemia, and some renal disease. These are things you
need to be aware of. Always keep Cerenia on hand for vomiting-- much easier than running to the Vets for an emergency supply.
The Chemo, Chlorambucil, is not supposed to cause much side effects, at a low dose.. but... it can.
Vet visits are usually every 3 months for blood tests..

The entire cost of treatment for SCL is expensive-- even with insurance. After having a previous cat, Artie, who was very sick with other diseases..He was so good, that I kept him around, for me... not for him.. his life revolved around meds.. My life revolved around medicating Artie..

I have decided that You have to find when and where your limits are. Geoffrey is getting 2 morning meds, Chemo every other day, 2 nightly meds.. a few times a week of laxatone, and miralax mixed in with his syringe chaser water, daily

This is a lot of meds. It seems his daily life revolves around meds.. The past month or so, I have found that he is tired of the constant medicating.. and is slightly protesting, and hiding from me when he feels it is time for meds... he slouches down and tries to sneak away, even when it is not time for meds. It hurts my heart, because he is such a love bug. He has become much more needy with cuddles, also. He always wants his Mama when he hurts.

Right now, I am feeling that the Mirataz-- appetite stimulant, is what is keeping Geoffreys weight high and stable. However, I have noticed, over the past week, it is not effective as long as it used to be. His weight is more than good, but I am having to take the food over to him; unless the Mirataz is recently applied; it does not seem to last into the next day.

I do not say this lightly.. I had a pretty bad case of asthmatic bronchitis which morphed into Pneumonia, in December.
I stayed out the the ER and hospital because of Geoffrey. I could not find anyone to feed him, because I was sick and the house was full of germs.. and absolutely no one would medicate him. I realized Geoffrey would severely suffer if I were to be hospitalized. It kind of opened up my eyes...and hurt my heart.
You need to find a game plan.

Right now, we are going through a very low time..Despite all the meds, Geoffrey has had 2 episodes of vomiting Bile.. Which he has never done, in his entire life. His vomits are usually food.. never bile.. What is causing this, I do not know... I can conjecture.. but..... I have also found that Geoffrey is getting more and more hard stools. When he does not poop, daily, he gets sick. weird.. but the bile is tightening. I never had a cat who vomited bile, without food.. and bright yellow.

Sorry for being so maudlin... this is about you and your baby, not mine..

I would advise you to have your baby seen by an IMVEt.. they are well versed on many issues. And possibly an oncologist.
I just use an IMVet. I have done research and have joined a couple of lymphoma groups on Facebook. I found difficulty dealing with the web based small cell lymphoma website. I never really joined it. I found the administrator demanding and justifying a 'certain' treatment-- to the extent of insisting I print up articles and give them to my vet about pulse dosing of chlorambucil. That is when I said good bye to that group.

It does seem that most SCL GI babies end up with anemia and/or diabetes.. Just be forewarned. But they can live 2-4 yeas after diagnosis! That is amazing.. remission is possible, but it does return.

again... love...

I'm sorry you're going through this and no, it's actually good to hear some of the actual stories with SCL so I know one of the many scenarios to expect. If you don't mind me asking, how long has it been since Geoffrey has been diagnosed? Did his symptoms become better after taking the chlorambucil and if so, for how long?

Did you ever have issues with food aversion due to the chlorambucil? Haylie has been a picky eater all her life.. doing all she can to get into dry food (which I explicitly do not give her!) but lately she has been really good on a raw diet.. so I'm hoping not to do anything that will deter her from eating it.

 

[aryia]

I don't have much to offer but do want to add a couple of thoughts. First, get an oncologist involved if you haven't already, and talk to them about pulse chlorambucil. Many are now treating cats with this approach, which generally means giving the chemo less often, but I do think the dosage is a bit higher each time. It seems to be helpful in reducing side effects - and it gives both you and your cat a break from such frequent doses.

It is the Pred that is inclined to provoke diabetes, usually only when given long-term, however that is not the case for some cats. Budesonide is less inclined to cause diabetes, and it is more focused on the digestive tract (so not as good for other types of cancer).

Also, if you do need anti-nausea meds and Cerenia is recommended but you don't find it working so well, you can ask about ondansetron. Cerenia is typically thought to work better to prevent vomiting, although it does have anti-emetic properties. The ondansetron seems to be geared more towards reducing nausea.

Thanks for the suggestion. I will talk to my vet about pulse dosing and see what he thinks. This might also be a good option since I will have to leave for almost two weeks next month. Will also ask about Budesonide while I'm at it.

I will keep Cerenia on hand but will try to stay off it. Hopefully she will not need it.

 

[aryia]

If your in the US some advice that may be good to know - if your Vet will write a prescription, pet meds are much cheaper to buy from the Canadian online pharmacy’s. I looked up an example for you : Leukeran 2mg 25 Tab = $75. The only stipulation is you have to buy a 90 day supply

Yes, my vet is willing to work with me and wow that is a huge difference! Is there any particular pharmacy which you prefer? I don't mind buying a 90 day supply.. considering the 90 day supply would be the same price as a 10 day supply here...

 

[NekoM]

Yes, my vet is willing to work with me and wow that is a huge difference! Is there any particular pharmacy which you prefer? I don't mind buying a 90 day supply.. considering the 90 day supply would be the same price as a 10 day supply here...

I’ve used Canadian pharmacies for a few years now, here’s a link to the page I found.
Buy Leukeran 2 mg Online From Canada | You Drugstore

 

[artiemom]

wow-- so much to comment on...
We are using Budesonide due to Geoffrey not really tolerating the Prednisolone. Once the Pred began, I noticed him withdrawing, having a spacey attitude, not being as alert as he usually is-- in short, not the cat I knew. His personality changed. I learned of Budesonide as an alternative from the FB lymphoma group. Once we switched, I noticed a dramatic improvement.

The pill gun is purchased separately. You do not have to use it. I just find it easier to pill with the gun. You can buy it from Chewy. It is not supplied with any compounding pharmacy orders.

Our IMVet prefers the every other day route of Chlorambucil. I asked about the pulsed dosing; but he prefers this dose.

I did notice an immediate improvement on his appetite and much less vomiting, as soon as he began the steroid. No issues from the chemo.

Geoffrey can discern any and all additives to his food; and will refuse the food. Since he also has IBD, and is on a novel protein diet (rabbit), I cannot allow him to have any food aversions. I use RC Rabbit PR (prescription) and Rawz rabbit (as an emergency food).

Honestly, I have no idea about remission. Or how to diagnose it. I guess it would be on symptoms??? Who knows??
Geoffrey's only symptom was vomiting-- many times a month. When he was on regular OTC food; he had a bit of soft stools also.

I, also feel that the chlorambucil could cause side effects; but, from what the IMVet has told me, and from what I have read, cats tolerate this chemo very well. Most side effects are from the steroid.

Geoffrey was officially diagnosed last spring/early summer. He had a biopsy in late May. The full biopsy report was completed in early June. Pred was initially begun, due to seeing some IBD and the possibility of SCL. After the full biopsy report came in, Chlorambucil was ordered. It took about a week to get it compounded. My gut is telling me he had the SCL before he was biopsied.

Yes, the care is incredibly expensive. It is breaking me. I mean it. I am eliminating my own meds in order to afford Geoffrey's care. I have insurance, but it is never enough, and the deductible is ridiculous.

If I may ask you about the B-12... Did you have to get the injections before the liquid dose? and how much is it?
I am suspecting Geoffrey to be anemic now... dam

It seems that anemia and diabetes go hand in hand with the treatment for SCL. I do not know of any cat who did not develop these issues.

*Tip*. When ordering, look for Chlorambucil not Leukeron. It is much less expensive. Chlorambucil is the generic version. of Leukeron.
* You may want to get some Mirataz as an appetite enhancer, to keep on hand--- along with the Cerenia. It all comes in handy.

Good Luck.

 

[Aileen666]

Hello everyone,
my 11-yr old girl Haylie was just diagnosed with small cell lymphoma. We already had her on prednisone since her endoscopy last week, but I'm low-key freaking out at the cost of chlorambucil (Leukeran) @ $40/pill that needs to be given every other day.

What has your experience been with small cell lymphoma?

There seems to be a compounded chlorambucil which is much more affordable, anyone have experience in this regard?

My 15 year old was just diagnosed with small cell lymphoma of the intestines and was prescribed some kind of steroid. She vomited it all out and ever since has been vomiting anytime she eats anything except broth and chicken. She mostly eats the broth and very little chicken. Well it’s the holidays so her dr isn’t back until Tuesday. He recommended oncology but they aren’t back in office until Wed bc of the holiday. I have been doing research on chemo and prednisone and I’m hearing not great things about it . I have paid thousands of dollars already just to get this diagnosis from xray , CT, ultrasound and the endoscopic procedure to get the biopsy to really be able to get the diagnosis. I will get more info about chemo in few days and it’s a lot to think about. I’m hearing different prognosis etc and if all depends on how the day responds to treatment and my work schedule that doesn’t allow me to give any drugs every 12 hours ( like the prednisone says ). It’s a lot to think about.

 

[Aileen666]

Thank you <3 I've been browsing through some of the threads. Each situation is so different I never know what to expect. I just wish the vet costs weren't so high.. it has taken almost 4000 just to have her diagnosed and while it's not the money I care about, I'm just really worried that at some point it will become infeasible.

I feel your pain. That is where I am right now. I talk to oncology wed when they are back but Tuesday I have ti call her internal medicine Dr bc she vomited all the steroids up and vomited ever time she eats after that one Injection. She sleeps all day and isn’t eating. It’s so hard because I love my cat but she is almost 16 ( will be in March ) and the cost of all of this is insane and from what I’m reading the side effects of the steroid on a lot of cars aren’t good. I have to get all the info from oncology before I decide to go forward with the chemo and steroids. I would love to have another 1-2 years with her but only if they can be heathy years. I don’t want her to be sick all the time and running away from constant medications and having to run back to the Dr with more problems bc of the chemo etc which will cost more money.

 

[Aileen666]

Thanks for the suggestion. I will talk to my vet about pulse dosing and see what he thinks. This might also be a good option since I will have to leave for almost two weeks next month. Will also ask about Budesonide while I'm at it.

I will keep Cerenia on hand but will try to stay off it. Hopefully she will not need it.

Get a pet sitter. I have a pet sitter when I’m out and she has cats she has to give pills to so I trust her. Right now my cat will take a pill pocket with her meds. She sees it as a treat and she loves her treats. My cat was just diagnosed with small cell lymphoma and is currently on prednisolone and cerenia ( something like that ) for nausea. She has her oncology appt this wed to discuss chemo. I’m terrified. I’m reading so many different things. I’m reading some chemo is a pill given once a week. Others are saying every other day. Some are saying they give it liquid , others say pills. I’m reading their cat was on chemo for few months , others say years. Some are saying meds are given twice a day others say once.
what I worry about is my schedule. My work schedule is all over the place. I travel a ton for work. I can usually take my cat with me but If she has to have a ton of follow ups with the chemo that means I can’t take her with me to other states or very far to work. Right now I know where I will be for 3 months and I do have a pet sitter who can come once a day on my days im
At work to help give the meds and check on her but I can’t afford to have the pet sitter come twice a day with the cost of all these medications and follow ups. My family is not helpful unless you pay them as well so may as well keep the pet sitter. It’s a very hard situation to be in. I’m just hoping the chemo isn’t life time and my cat doesn’t have a ton if issues with these medications

 

[silent meowlook]

I get my Chlorambucil from Wedgewood Pharmacy. About $1 a pill.