Feline Polycythemia Vera

leonardothecat

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Leonardo's RBC level reduced to 45% when visiting the vet.  Leonardo is now back home, it is his 4th day back.  He was brought home earlier in the week, but had a reaction to the IV.  His paw became gigantic, so he had to go back for a few days for some warm compress + antibiotics.  His RBC level was at 58% again when I had to bring him back.  During the time he stayed at the vet for his paw, he seemed normal and active.  They did not give him any treatments for this RBC the second stay.

His first day home, he seemed mostly normal and alert.  I gave him his Hydroxyurea medication for his RBC for the first time.  He ate and drank well.

On his second day, he seemed more lethargic and not as alert.  Wasn't interested in playing with his toys and vomited once.  After vomiting, he ate very well but still didnt seem too enthusiastic about anything.

The third day was mostly the same.  More alert, but not interested in playing with anything.  No vomiting and ate very well still.  Gave him another dose of his medication.

Today, he seems a lot brighter.  Wanting to play and very energetic.  Eating and drinking normally.

Not sure what to make of it all yet but hoping for the best!
 

mstammy

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This sounds like he is improving to me so thats good! I was a nervous wreck the first few weeks after I brought my cat home from the vet . I didn't want to leave her but I had to go to work and each day I came home, she was doing well. Stay positive ! Thinking about you and Leonardo !
 

sophiesmum

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Hello, in a nutshell,my lovely little Sophie was last week diagnosed with Polycthyemia Vera, after having a seizure. Her blood count at its highest was 81%, then dropped after each "bleeding". She was allowed home on Friday, awaiting meds to arrive. Yesterday (Monday) at her follow up blood test, her count was 51%, so a good improvement.
The meds (hydroxurea) arrived today and she needs to take 1 x 100mg for the next week, pending her next blood test in a week's time.
My question is, I am so nervous about giving her these pills, even though I know she has to have them. Can anyone advise how quickly I will notice any side effects? Also the best way of administering? I have years of experience of giving pills to our last cat who had CRF, but a bit more worried about hydroxurea as it's cytotoxic.
She has a twin sister who I need to make sure doesn't go anywhere near these pills.
Any advice would be great, thanks in advance.
 

Ga s

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I don't know how active this thread is anymore, but back in early January when Eddie Soprano was diagnosed with Polycythemia vera after experiencing focal seizures on a Saturday morning, I found you all and read every single entry. I learned more from the input by members here than anything else I read on the internet, including veterinary information sites. There is nothing more educational that reading about the actual experiences of people.

Eddie was admitted to hospital for three days. He was given a thorough workup to rule out kidney tumours and heart disease, then phlebotomized twice and released pending a check on his hematocrit a week later. Two weeks after that it was checked again, he was phlebotomized and started on 85 mg Hydroxyurea every other day. Now two weeks later, hematocrit shows he is responding well to the drug. He has had no side effects whatsoever. He has a good appetite, is active and badass.

I discussed dosing of Hydroxyurea with the internal medicine specialist because on veterinary sites the recommendation is to high dose for a week and then lower the dose. I suggested that a.) since the cancer does not become resistant to the drug if it is underdosed, I see no reason to give the cat a high dose which can result in a possibility of side effects, and b.) with humans who have Sickle Cell Anemia, dosing recommendation is to increase the dose based on response. She agreed with me to give him the maintenance dose first and observe how it affects him. He's not overweight for a cat for his size, 5.3 kg.

His hematocrit on admission was 74. One week later it was 65. Two weeks later it was 68 brought down to 64 with phlebotomy. Now two weeks into chemo, it was 62 and the internal medicine specialist did not perform phlebotomy because he is responding well to the chemo. He has his next appointment on March 22 (one month). I'm very grateful that he's only had 3 phlebotomies because even though he's a very outgoing self confident 'owns the universe' type personality, it is hard on him to have this procedure done. Mostly the I.V. saline administration is a slow process and he was really upset and confused coming out from sedation last time around.

Eddie is 11 years old. Aside from the Polycythemia vera he is a very healthy cat. He's a special guy who has extensive experience raising kittens as a 'foster mommy-daddy'. Two of his 'children' live here with him as well as three other cats. I have been unable to accept foster litters for quite some time because he becomes very attached to the little ones and grieves when they are gone. He has his two grown up 'babies' living with him and that seems to give him the comfort and satisfaction his sort of character requires. He most certainly would not do well in a single cat household.d

I am very grateful for this forum. It was hard reading at times because it was a very difficult emotional situation to find out that Eddie was so sick. But the information I obtained by reading everything has been invaluable for my understanding, decision making, and extremely comforting to know that Murphy had been doing very well 8 years and counting. Also it gives me a sliver of hope that Eddie may go into remission (although yes, a very small sliver) based on the two reports of cats not requiring medication after a couple of years.

Thank you.

gabi.
 

gomezopotamia

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Hello Gabi,

Thank you so much for posting your reply and sharing your experiences with PV. I was one of the regular posters on this thread with my cat Gomez. It’s so difficult to find information on this incredibly rare disease without forums like this.

My cat Gomez stayed on 100mg. daily of hydroxyurea for over two years with no side effects. We also have one of his litter mates that shared food, water, litter boxes, toys etc. and she never had any ill effects from it. He was so well controlled on the drug it was easy to forget he even had PV. However it did take a good month or two for the drug to control his RBCs, for a while we only saw the WBCs drop and were worried the drug might not be working. Always be persistent.

Unfortunately Gomez also had underlying heart problems that untimately took his life (diagnosed before the PV). He passed away last May from heart failure and a saddle thrombus. He was 10 years old. His heart failure was managed well for over a year with the help of various medications.

I would also like to note that the day he passed away his hematocrit was 68, so it was climbing. I don’t know if the hydroxyurea lost its effectiveness causing it to raise which ultimately caused the blood clot that killed him. It’s difficult to say. Either way his heart failure had progressed to the point where it could no longer be controlled.

Ultimately hydroxyurea bought him two years that he wouldn’t have had otherwise. I feel so sad when people don’t try it because of the side effects. Gomez too lived a very active, happy, (often destructive) and mischievous life while on it.
 

Ga s

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Maybe so far Eddie is fortunate that he has no cardiac issues or anything else except the PV.

You did the best possible for Gomez and he was fortunate to have you. When I was in the waiting room at the veterinary emergency clinic, I was thinking how utterly heartbreaking it would be to not have the funds to pay for what needed to be done for Eddie. With six cats I do not bother with insurance. Most of the time the cats get along just fine until they become elderly. Routine things like dental cleanings and annual check ups are not out of this world expensive and the total vet bill per year is significantly less than what insurance for six cats would add up to. My other cats lived to over 18 years. Even though the initial cost of diagnostics and treatment was about three thousand dollars in all, ongoing care is extremely reasonable. His last appointment was less than one hundred dollars and his next appointment is a month from now. My main concern was not financial because I have an annual cat budget set aside. It was 'is ongoing treatment reasonable and affordable? Will he have quality of life'? From what I read on this forum I learned yes, yes, and yes.

Eddie's hematocrit was 60 back in November 2016 when he had his teeth cleaned. I am not going to rake my regular vet over the coals because quite frankly I cannot remember if he said anything about doing an update. At the time, 4 of the cats were going in and out getting bloodwork and dental done. Plus one of the cats gets pancreatitis every winter (I now have a working hypothesis and will try it out next winter....) and I was treating her. (and yes she got it this winter too but by now I am aware of the initial signs and begin medicating immediately. Then she gets bloodwork done to verify and followup when I can tell she's recovered.)

All of Eddie's medical records from the veterinary emergency clinic have been sent to my vet (who has been the family vet since 1993... so he may have dropped the ball this time, nobody died) and he's been in contact with me about Eddie's case. He's been a vet for almost 40 years and so far Eddie is the only PV case he 'never saw'...or now sees. if you know what I mean. He says that in vet school these sorts of conditions were mentioned briefly but since Eddie got diagnosed he's reading up on it all. As we say in my language 'the good priest continues to learn until he dies'. No one knows everything. The best thing is to be humble and keep learning. Eddie didn't die because my vet didn't recognize that there was a problem. And I don't think it would have cost me much less if he'd been diagnosed a year before he was. They would have still had to do all the same series of diagnostics. The only thing that wouldn't have happened was the focal seizure.

We are fortunate that there is a comprehensive veterinary emergency hospital available to us. Eddie is a VIP (very interesting patient). I'm sure given how rare this condition is, they probably have not seen many cases like his or maybe not any. I have not asked the internal medicine specialist yet but will. She's great. I really like her and also the other staff at the clinic. Too bad she can't be my doctor! LOL!

Soon two cats are going in for bloodwork and dental...... it's a revolving door. But that's the responsibility when a person has six little furry buddies. For me home isn't home without pets. My kids seem to have the same problem seeing as how they grew up with pets since birth. One has a German Shepherd and the other has two cats. The dog had a twisted stomach last summer and had emergency surgery (including a splenectomy) at the same place as where Eddie is a patient.

I just find it so ironic that after making dietary mistakes with my first group of cats, all of these are getting a species appropriate diet seeing as how cats are obligate carnivores. The aim of the game is to not have cats develop kidney failure or diabetes or any of the other chronic diseases cats develop from eating kibble. But wouldn't you know it? Doesn't matter what the cats eat, it doesn't mean they won't develop something rare and exotic. It's all been a 'continuing education program' for me as I said to the internal medicine doc.

Thanks for replying to my post to this forum. I'm sorry that your Gomez has departed to (what we call it in this family) 'the happy pigeon hunting grounds'.
 

SniperQ

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Wanted to update my cats status.
We decided to take Nibbles to a holistic vet who specializes in Chinese Medicine. On 9/10/2015 9still having multiple seizures a day) we started feeding Nibbles a Chinese Herbal formula that the holistic vet prescribed to us and within an hour of feeding the cat the herb, she was pretty much normal. No more seizures and she has been seizure free since then. She is more playful and loving than ever.

We also received a second Chinese Herbal formula that we hope will help with the high red blood cell count which we started her on today.

We have an appointment with our vet on 9/22 which will include a PCV test to see where her count is at.

We are hoping to take her off the keppra where it has seemed to fail after a couple of months and rely solely on the Chinese herbs as treatment. I must say we were floored by how quickly Nibbles improved after starting the Chinese Medicine therapy. We only hope that this is finally the answer.

I will keep my post updated as we continue on this journey. It's been a difficult one for sure.

Kevin and Nibbles :)
Hello Kshaley - i am not facing the same issue. Hydroxyurea doesn't work. I can just resort to Chinese herbal formula. Would you mind sharing it with us as well? The condition looks worse - I am worried that phelbotomy won't work for him one day. Pls help!
 

sophiesmum

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I first posted on this thread when Sophie was diagnosed with PV in February 2017. I just wanted to say to other owners also experiencing this condition, don't give up hope. At first the outlook was very uncertain for Sophie, but she has gradually improved to the point of stability and not needing to be 'bled'. The specialist referral vet has also taken a back seat for now as our own vet has happily taken on the case while we have stability.

Sophie has a blood test every 4-6 weeks, alternating between in-house PCV only and an external lab test. Her PCV has gradually reduced down to 42%-44%. She has 1 x Hydroxurea every 6th day. Sophie is slightly immunocompromised because of the Hydroxurea and is more prone to quickly pick up illnesses than a non immunocompromised cat.

Regarding the PCV, we tend to rely the on in-house result rather than lab result, as we have found that the latter can often be misleading and higher than in-house.

Unfortunately Sophie has recently been diagnosed with early CKD, but at least this is a more common condition and we have plenty of experience of it with previous cats.

Perhaps one day Sophie will be confirmed as being in remission from PV, but for now we are just grateful and so happy to have her still with us. We also keep a close eye on her littermate sister, Sheba, for any signs of PV.
 

ivory

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Hello Kshaley - i am not facing the same issue. Hydroxyurea doesn't work. I can just resort to Chinese herbal formula. Would you mind sharing it with us as well? The condition looks worse - I am worried that phelbotomy won't work for him one day. Pls help!
Kevin, what was the name of the Chinese herb? My kitty has polycythemia?
 

ivory

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Can anyone tell me is the replacement saline sq or intravenous? My vet is suggesting sq?
 

TKasper1

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It looks like nobody has posted for a few years so I’ll share Coco’s story. 3 weeks ago our 5 year old male cat Coco started to limp on one of his back legs and shortly after he began having nonstop focal seizures. We took him to the emergency vet thinking he had epilepsy but were devastated when they later called us and told us Coco most likely had PCV as his blood count was 81! The emergency vet told us she had never seen a cat with numbers that high and wanted us to immediately come and get him and take him to a specialist. It was nearing midnight and the specialist was hours away, on top of that it was Friday night and the specialist might not be in until Monday, with Coco in such critical condition we decided against this. The doctors gave him fluid treatment overnight and by 6 am his blood count was down to 70. They ended up treating him for 52 hours with fluids and performed 1 small phlebotomy and the night he came home his blood count was 62.

We went to our regular vet 2 days after he came home to have his numbers checked and they had increased to 66. Based off images taken of Coco’s organs and no seizures since, the PCV seems to be primary so we are avoiding a specialist for now and our vet is managing it. I also wanted to mention that our vet, like many of yours, has never treated PCV in his 20+ year career. Some of the emergency vets also had not but several had.

Coco received 1 additional phlebotomy (40 ml) from our vet and started hydroxyurea 2 weeks ago. I know many are hesitant of the drug but we prefer it over phlebotomies. Coco is very aggressive at the vet, even on gabapentin, so he has to be sedated every time and that paired with the phlebotomy just seems to take the life out of him. We are very careful with the medicine and give it by syringe. The medicine is compounded in a chicken flavor liquid. We started by giving him 1 ml (50 mg) twice a day but he really hates that second daily dose so we will be getting his next bottle as 100 mg/ml so he can get his 1 ml every morning and go on with his day! Coco has tolerated the medicine very well so far. No serious side effects, our vet said if he ever gets side effects we will just lower the dose. We also have 1 other cat so we keep their food bowls and litter boxes separate now. Every time we give him his medicine I clean the litter boxes just to be safe and put everything in a doubled bag for disposal. So far so good, our other cat seems to be fine.

A week and a half ago he had his blood count checked and it had fallen to 58. He will go in for his next check in 2 and a half weeks. This has not been inexpensive. His stay at the emergency hospital ended up costing $2,300 and his vet appointments/medicine since have totaled $995. His medicine was very expensive the first time we got it because we paid for expedited shipping, that total was $185. This does not even include extra things we have purchased for him like changing to wet food, buying a nice water fountain, supplies for when we give medicine, etc. We love him so much and he is so young, we feel lucky that we can afford to treat him but we also see how quickly it has added up. I saw some people wondering about the cost of a phlebotomy so I figured I’d add that too, our vet charged $50 for the phlebotomy, $50 for fluids, and $50 for sedation so $150 all together.

This whole experience has been such an emotional rollercoaster. I just want to end by saying that finding this thread has been a godsend. All the info that everyone has so kindly provided gave us the confidence to face this head on and provided some light in the darkest of our moments. You all inspired us to be Coco’s biggest advocate too. The diagnosis is terrifying but it is treatable and we are going to continue to take Coco’s journey one day at a time.

Sending our best wishes to anybody else going through this.
 

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sophiesmum

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TKasper1 thank you for sharing your experience. It sounds very similar to Sophie's experience.

Although it is a bewildering experience at first, with the correct treatment and care there is definitely a lot of hope for Coco and any other cat with this very rare, relatively unknown disease. Sophie is continuing to do very well with an in-house PCV reading of 42-45% at her 8 weekly check ups, and is on 1 Hydroxurea pill every 10 days. She has amazed everyone with how well she has done. We are very lucky to have a vet who personally offered to take on her case when the specialist vet left. If you are in the Wiltshire/Somerset area of the UK, I would happily recommend him.

Sophie has also not only been featured on her veterinary practice Facebook page, but 'Supervet' Professor Noel Fitzpatrick has also featured her on his Facebook page: https://m.facebook.com/story.php?st...WApsqrSbXuFl&id=100044481667596&sfnsn=scwspmo

There are also a few other Facebook pages for PV in Cats and Dogs, I'll try and find the links. I've also created a page for Sophie, which I update from time to time.

Please do ask away if you have any questions or need any support. Wishing you and Coco all the best in your PV journey.
 

TKasper1

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TKasper1 thank you for sharing your experience. It sounds very similar to Sophie's experience.

Although it is a bewildering experience at first, with the correct treatment and care there is definitely a lot of hope for Coco and any other cat with this very rare, relatively unknown disease. Sophie is continuing to do very well with an in-house PCV reading of 42-45% at her 8 weekly check ups, and is on 1 Hydroxurea pill every 10 days. She has amazed everyone with how well she has done. We are very lucky to have a vet who personally offered to take on her case when the specialist vet left. If you are in the Wiltshire/Somerset area of the UK, I would happily recommend him.

Sophie has also not only been featured on her veterinary practice Facebook page, but 'Supervet' Professor Noel Fitzpatrick has also featured her on his Facebook page: https://m.facebook.com/story.php?st...WApsqrSbXuFl&id=100044481667596&sfnsn=scwspmo

There are also a few other Facebook pages for PV in Cats and Dogs, I'll try and find the links. I've also created a page for Sophie, which I update from time to time.

Please do ask away if you have any questions or need any support. Wishing you and Coco all the best in your PV journey.
Hi sophiesmum, thank you for the response! We live in the United States but thank you for recommending your vet! I would love to join the Facebook groups you mentioned and I’d love to follow Sophie’s page as well.

How old was Sophie when she was diagnosed and how old is she now? I was also curious what mg she takes once a week? We are looking forward to the day when Coco can be weaned back from his medicine.
 

sophiesmum

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Hi sophiesmum, thank you for the response! We live in the United States but thank you for recommending your vet! I would love to join the Facebook groups you mentioned and I’d love to follow Sophie’s page as well.

How old was Sophie when she was diagnosed and how old is she now? I was also curious what mg she takes once a week? We are looking forward to the day when Coco can be weaned back from his medicine.

Hi TKasper1, I've screenshot Sophie's page and the two other groups 😺 Sophie's page is really just a journal of her progress and blood test results, but hopefully you will find it helpful.

Sophie was 4 years old when she was diagnosed, and she and her sister have just turned 11 years old. Sophie is on 1 x 100mg Hydroxurea (brand name Siklos), every 10 days.

Wishing you and Coco all the very best 🐈⬛
 

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Ga s

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Hello,
I just want to post a longtime followup on Eddie Soprano's Polycythemia vera situation. He was diagnosed in February 2018 and was put on 85 mg hydroxyurea per day until November 2022 when his dose was reduced to every other day because his hematocrit was going down. In August 2023 he was diagnosed as anemic so the hydroxyurea was stopped. In November 2023 his hematocrit was recovering and now in February 2024 it was 41. He officially is in remission. I guess my prayers were answered.

Eddie had an echocardiogram done in February 2018 which showed that his left ventricle wall was thicker than normal. The echocardiogram done in 2023 showed that he wasn't any significantly different than in 2018.

The ultrasound done in February 2018 showed calcifications in his kidneys but the data was not shared with me. In 2021 an ultrasound showed that one of his kidneys had shrunk due to the calcifications. His other kidney had some. Since mid 2021 he has been getting 100 ml lactated Ringer's subcutaneously every day. His kidney function is stable. He's had this checked several times since.

I adopted Eddie when he was 4 years old. I think probably the diet he'd been given was not the best. He was being fed kibble when I adopted him. I started him on small amounts of grain free kibble (probably a huge mistake) and Fancy Feast pate. This was for the first couple of years. Then he went on 100% canned food diet (Fancy Feast).

Eddie is now 17 years old. He gets 2mg cyproheptadine every day to make sure he has a good appetite. When I started this, it was because the ultrasound in 2021 showed he had sand in his gall bladder. He had a poor appetite and had lost weight. The vet prescribed bile salts except that won't actually solve the problem. Increased food intake and dietary fat would stimulate the gall bladder to eject its contents so Eddie also gets at least 1 heaping tablespoon of 14% sour cream every day. He does not get loose bowel movements from this and he really likes it. Some days he eats 2 tablespoons worth.

For a 17 year old cat he looks extremely healthy. He weighs 6kg now. He eats 3 cans of Fancy Feast per day. 270 kcal. plus however many calories from the sour cream. His fur is silky smooth and shiny. I brush his teeth almost every day with a Ryercat toothbrush.

He's my super intelligent miracle cat.
Just in case some people think that PV is a death sentence, please don't give up.
 

fionasmom

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Thank you so much for telling us about Eddie Soprano's success story! Many times new members will read older posts and ask if there has been an update or outcome.:hugs:
 

Ga s

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About 10 years ago when he wast 2.5 years old, my male cat Chance developed polycythemia vera. His RBC was at 70% when they did his first blood test. After a bone marrow test that determined his disease was of unknown origin, the vet recommended that we put him hydroxyurea. As I write this paragraph, it sounds like it was all so simple -- but it wasn't! It was many days of touch and go, crying, and the complete unknown as the doctors tried to determine what was wrong with him and if a short or long term treatment plan was even available.

After the initial scare and development of a treatment plan, we brought him in for blood tests about every 4-6 months to make sure that his levels were remaining consistent while on the medication. The frequency of his drug dose changed over the years. Ultimately, we were able to keep his blood level in the normal range by giving him one pill a week. And thankfully, he has a plastic obsession and the pill was a capsule, so he considered it a treat. So did I because pilling this cat every week would not have been easy!

After about 9 years of being on the drug -- it stopped working for him and his red blood count rose and he showed the same symptoms as the first time: lethargy, loss of limb movement, heavy blinking.

We tested the last dose of meds to see if they were correct. They were. We tried some other medication that made him completely stop eating. We were running out of options.

The doctors told us that at that point, the only way to keep him red blood cell count in the normal range was to do a phlebotomy every 4 weeks. It was a tough decision. It meant one day a month he was brought to the vet for a few hours while they did this treatment. Would we be doing this for us or for the cat? After much discussion, we decided that since the other 29 days of his life were still fun for him, we went ahead with the phlebotomy plan.

Unfortunately, after about a year of phlebotomies, there was too much scar tissue in his veins for the specialists to get enough blood. We looked into a few options that would have turned him into "Franken-cat" and we decided instead that we would keep him happy and comfortable until his RBC got too high for him to survive and then we'd put his to sleep.

Unbelievably, after the first month on his own without blood draws, he was fine. Another month went by and still no tell-tale behavior of high red blood cells. I took him in for blood tests to check his levels, and he had mysteriously leveled off in the safe (for him) range of high 40s/low 50s.

Even his internist was surprised. Her though was that his bone marrow had been overproducing red cells for so many years that it finally gave up.

For Chance, he's lived the last year phlebotomy and medication free, and has only been subjected to 2 blood tests -- both of which came back with good numbers.

In the many cases that our internist has seen of cats with polycythemia vera, Chance is the only one who stopped the over production. He's due for another blood test next week, and I'm hopeful that he'll have good numbers once again, as his behavior is completely normal.

We know he won't be around forever, so every month he's still here we are happy to have him in our lives. And in the 12 years of his life so far -- he's proven to be quite the incredible cat.

I wish you luck with your cat.
Thank you so much for telling us about Eddie Soprano's success story! Many times new members will read older posts and ask if there has been an update or outcome.:hugs:
Thanks. When he was diagnosed I read every entry in this forum. Someone had a cat on hyroxurea for 7 years at that point (2018). That made me feel optimistic for Eddie. He beat cancer after 5 1/2 years on chemo has been truly wonderful. Of course he has only one kidney and needs hydration therapy, but that's okay. He's cooperative and somehow, deep down in his cat soul, he knows the subcutaneous infusion makes him feel good. Either that or he really enjoys the head massage he gets during the process.
 
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