Need Info On Lymphoma And Treatments

[Guest caelanarcher]

Got the FNA results back this morning, and it's definitely lymphoma. "Very active", but not yet in his spleen/liver/marrow (from what I can tell, that means that it's stage III, right?). Setting up an appointment with the oncologist for this week, but I'd like to go in with all the information I can get.

 

If you've had a dog with lymphoma, would you mind answering some questions for me?

 

How old was your dog when diagnosed?

How far had the cancer progressed by the time you got the diagnosis?

What prices were you quoted for the various treatments?

Which treatment did you choose?

What was the cost breakdown? (x$ for the appointment, y$ for the drugs, z$ to have them administered, a$ for surgery, etc)

How long did your dog live, post-diagnosis?

What was his/her quality of life during this time?

If you could do it over, what (if anything) would you do differently?

 

Sorry, I know it's a lot to ask. If anyone's not comfortable posting the information publicly, you can PM me, or email me at kcarnahan10@gmail.com. Thanks in advance, for any information that you're willing to share.

[Guest K9Cookies]

Hey. I'm so sorry you are going through this. We've been through it and I'd be happy to share everything with you. Definitely PM me anytime.

 

-Bonnie Twist was diagnosed in February of 2008 and she was 5 years old.

-We feel like we caught it pretty early. A friend noticed that Bonnie's lymph nodes were very obvious and we got her in to see our vet the next day

-We weren't too concerned about prices early on, but that quickly changed. Definitely contact Dr. Couto's team and see if you can get the medication through their program at no charge. You'll still have to pay for your vet's exam and the administration of the meds, but believe me, it's worth the emails and phone calls to OSU

-We did several protocols with Bonnie. I can't remember the 1st one we did, but it's in all of my notes at home

-Our vet is pretty expensive. The exams were usually between $45-$100, meds were several hundred and the admin. charge was pricey too.

-Bonnie lived exactly one year with chemo pretty much the whole time. Some protocols were pretty easy and done at home, some protocols we had to make weekly appointments (or every other week) to get the chemo.

-Her quality of life was good, but there were plenty of ups and downs. It was a struggle at times to get her to eat, but with Pepcid and Rx meds for her stomach, that got better.

-We would do it again, but we would request the medications from OSU from the very start.

 

I hope this helps. It is quite a rollercoaster, but well worth it, in our opinion. Bonnie was so young and we felt she deserved a chance with the chemo. I will look up the protocols when I get home. I think we did 4 different ones over the 1 year. Hang in there and contact me anytime.

[Guest mountain4greys]

Our Red Bone Coon Hound had lymphoma when she was 4. I first noticed when I was playing with her. I was rubbing her neck and felt a very tiny bump. At first I thought it might be a tick. My DW, who worked for a vet for 10 years said that we needed to get her to the vet right away. We were there in 10 minutes.

 

He felt her neck, and drew samples from her lymphnodes in her hind legs. He said this wasn't going to be good. In 2 days the test results came back, and we got the news that he told us he told us 2 days earlier. Her lymphoma was a quick moving one, and has already spread throughout her body. He gave her 30 days. She lost her battle at 29 days, and only 4 years old. She started slowing down around 15 days after we got the news. But there wasn't anything we could do. Her appetite was good until the end, but she was just to tired.

 

If we could do it over again, would we do anything differently? Unfortunately for us, there wasn't anything that could be done, just keep her comfortable. We spent all our time with her all the way up to the very end.

 

I hope your hound has one that can be gotten rid of. I've heard some very good stories, and I would be very optimistic that maybe treatment would help. Lots of prayers going out to you and your hound.

[Guest OurLacyandJax]

So sorry you are going through this. I have no experience with this. I did do some reading up on the OSU Greyhound program and even became a member. As K9Cookies said, they are the best! Please do contact them.

 

Other than that, just sending good thoughts and prayers, and calmness.

[DaisyDoodle]

CoCo (Cosmo) was 12 when she was diagnosed. She lived for 28 months from when I first noticed her nodes enlarged. (It took a few weeks to get an initial diagnosis as the vet insisted on a round of antibiotics first.)

 

She was on a Modified Wisconsin Protocol for the first year, then a salvage protocol of CCNU the second year. My GP vet did the first protocol and was very conservative with the amount and timing of the chemo agents. He felt we were controlling the cancer, rather than "curing" her. So, the nodes were up and down, but the chemo would continue to work.

 

A couple of months before CoCo's 14th birthday, I stopped the CCNU and her nodes never enlarged again, so I think it might have "cured" the lymphoma.

 

CoCo also had suspected degenerative myelopathy, and received prednisone for both the DM and the lymphoma. My one regret was that I gave it to her every day because she couldn't walk otherwise. I now know that this causes problems with the adrenal system--it causes iatrogenic Cushings. The vet explained to me that I should give it every other day, but in the end he let me give it every day because she couldn't walk without it. In retrospect, he knew she was receiving palliative care, but I didn't realize it at the time.

 

In the end, I think it was a combination of the DM and the pred that caused me to let Cosmo go to the Bridge a little more than four months after her 14th birthday.

 

I don't recall how much it cost (plus it was several years ago--she died in May, 2005), but I do remember that going to the GP vet was much cheaper than a specialty vet; that L-Spar [L-Aspariginase] varied widely in pricing and availability ($128-$800); and that I was NOT happy with the vet school I took her to initially because all the work was done by students, wasn't done well [They insisted on bone biopsy but didn't get an adequate sample, and didn't tell me how painful it was.] and charged me double for an oncologist's "consult". [Once for the vet student to talk to the oncologist and AGAIN when I wanted to talk to the oncologist.]

 

One thing you didn't ask about that I recall being a problem was getting her to eat. We gave her Hill's ND, which is for dogs on chemo.

 

http://www.hillspet.com/products/pd-canine-nd-canine-canned.html

 

The KEY to using this food is to initiate feeding VERY slowly. Start with a 1/4 to a 1/3 of a can per day and work up VERY slowly from there. This food is SO rich that many dog's can't tolerate it and have to go off of it. When Cosmo was eating it, she got up to 3-4 whole cans per day. She only got that much when she would con dog sitters into giving it to her, as we all knew how important it was to feed her when she was hungry.

 

Unfortunately, she tired of it after a while and we had to find something else to feed her. We tried everything--turkey, salmon fillets, pork tenderloins, you name it. The downside of trying to keep weight on her is that our little black mix, who should have weighed about 60 lbs, got up to 83 lbs because she'd outsmart the humans and eat the food we left out for Cosmo. Four months after Cosmo died, Lucky blew out her ACL she had gotten so heavy. Lucky's now 15 yo and 50 lbs., and I wish she'd steal someone's food.

 

Where are you located?

 

Please contact Dr. Couto's group, they can certainly tell you what the latest protocol is that they recommend.

 

Good luck. Lymphoma can be a roller coaster, but in some cases it can be managed for years.

 

Hugs,

Donna

[joejoesmom]

I don't know much about lymphoma, but I remember asking OSU about a low carbohydrate diet for my Joe (osteo) and whether it would be beneficial. They said that it hasn't proven beneficial in osteo but it has in a few types of cancer. My memory is hazy, but it seems to me they said that lymphoma was one of the cancers that they felt a low carb diet was useful. Something else to add to your list of questions. EVO is one of the low carb commercial diets. Although low carb is what is important, low carb typically is a diet high in protein.

 

Jane

[Guest caelanarcher]

For those of you who may some day have to deal with this on your own, here are the quotes I received for the different treatments.

 

No treatment: prognosis, 2-4 weeks.

 

One L-spar treatment: $407.92. (59 for administration, 44 for disposal, 236 for 10k units of elspar, 36.78 for diphenhydramine, 32.14 for dexamethasone)

 

CCNU/Cerenia: $767.50, every 3 weeks for 6 months. Total: $9210. (44 for chemo recheck, 57 for CBC, 79 for liver profile, 35 for administration/disposal, 223.50 for CCNU 50mg, 65.65 for cerenia, 63.35 for ccnu 7mg, 200 for antibiotics)

 

Modified Wisconsin Protocol: $7300 with no CVCA, $8170 with CVCA. Week 1: Vincristine ($376), Week 2: Cytoxan ($321), Week 3: Adriamycin ($1130), Week 4: CBC ($57). I can provide further breakdowns for each week if anyone wants it. This gives a prognosis of 9-18 months.

 

Prednisone: $32.81. Prognosis 1-3 months.

 

With any of the treatments, the vet would also like to add in a set of chest x-rays to check his heart and lungs. That's about $300. He also offered us the option of a spleen/liver ultrasound ($500), but said that with Aaron's bloodwork, the money's better spent elsewhere. "Anything we do diagnostically at this point could help us pinpoint a treatment plan, but if you can't afford the treatment for it, then it's worthless."

 

 

So that's where I'm at right now. This came at absolutely the worst time, and it's not a decision I expected to have to make for several years. Am I supposed to just sit down and say "Yes, I'm willing to spend X$ for another year, but not Y$"? I can't afford $8000 for chemo treatments. Even if OSU could provide the chemo drugs (and from what I understand, they're backordered for their own patients), it would be over $7k. I feel like I've completely failed. I mean, yes, I knew that hounds could be a huge investment. But can I really put myself so hugely into debt to fight a disease that's always terminal?

[Batmom]

Whereabouts are you located, and what type of facility did the quotes come from? Only reason I ask is: Batman's CCNU treatment (one treatment) was @ $85 + bloodwork. CBC + chem panel here is $75-$85, and IIRC the vet school didn't recommend a chem panel each time so a person might be able to squeak that down. If I'd continued treatments for him, it would've been @ $170-$300 (depending on how many rounds of bloodwork he needed in between treatments) every 3 weeks. He had a different cancer, not lymphoma, so I can't advise there. Can only send lots of hugs.

[Guest caelanarcher]

I'm in Northern Virginia (notoriously expensive), and the facility we went to was the oncology department of the Hope Center.

[Guest OurLacyandJax]

There are far wiser folks in this form than me (who was practically whelped yesterday here) to give you words of comfort, but I think I want to put in my 2c.

 

No real advice regarding the treatment options - but I can tell you anything you do would be the right thing. I might get flamed for saying this - but, see what you can afford, spend that much on your pup. Then just spoil him with his favorite treats, hugs, walks and some quality time. In all practicality, I doubt our hounds understand the concept of time. 3 years, 7 years, 13 years is all the same to them - we are the ones who put a number on their days here. So when his time is limited on this planet, it is limited. All I can think of at this point is - if he can somehow be pain free, and happy in the end, he possibly could not care less.

 

No, I have not experienced this traumatic time yet with our greys yet - and when I do (it is only a matter of time, I feel) I am quite positive that our grief will cloud the path of decision making. May be my 2c helps you during your sad times.

 

You have not failed. Not in my eyes. Sending some warm thoughts/prayers your way.

[Guest zoolaine]

You can buy the elspar from Costco pharmacy (they can special order it. I think I paid $80 for a vial which was one dose) and take it to your regular vet to administer. Sunny (a Catahoula mix) was diagnosed with cutaneous lymphoma last January. He lived about 6 months with the chemo before passing away June 15th. Sunny tried several different protocols before finding one that put him into remission and he did have several good months, that I wouldn't trade for the world. But overall it was a very difficult 6 months, I had to drive him to Seattle for his chemo treatment, about 3 hours each way. Because his oncologist was so far away we did do the elpsar here locally. I ordered and picked up the elspar from Costco and took it to my regular vet who just charged me for the benadryl shot they give before the elspar (???? not sure if that was what it was) and a small administration fee but it was much cheaper than going to the oncologist for the treatment. Sunny had amazing response to the elspar, unfortunately the results do not last long and they can only have so many treatments before it doesn't work for them anymore. Sunny actually responded to a lot more elspar treatments then usual. I want to say he had 6-8 elspar treatments, but I can't remember for sure. He also had other health issues which made it more difficult to treat the cancer. It was very difficult to get the last 2 vials of elspar because I guess there was some short of national shortage - but that was last June.

 

I was lucky in that Sunny had insurance that paid the first $2500 - which was about 2 visits to the specialist/oncologist to get diagnosed and his first treatment. And then I took money out of my IRA account to pay for his treatment. I wouldn't necessarily recommend taking money out of the IRA but for me it was the right choice. I do not regret anything as far as doing what I could to treat Sunny. I probably spent $8,000 - $12,000 on him - I don't even want to add it all up. But I would do it all again and am just thankful that I was in a position to do that.

 

You have to do what you feel is right. Sunny had already been on prednisone for other heath issues so that really wasn't an option for him. But I have heard dogs having several good months with it. There really is no right answer.

[joejoesmom]

First of all, I would check with other vets or even investigate coming to OSU from Northern Virginia (others have done this). We can put you up so you don't have a hotel cost.

 

I have been told various prices by other people. It can vary significantly from vet to vet. Specialty vets typically charge more than general practice vets.

 

All that being said, I would guess the the cost would still be significant. If you could cut the costs in half would it be doable? If not, then it might not be worthwhile to check other vets out.

 

FYI, I had my dog at OSU today (follow up from amputation and chemo). Here is what I was charged:

 

oncology visit: $56.25

CBC $30

Urine dipstick $17

Radiology Thorax (i.e. chest xray) - 3 views $114.25

Chem profile $62

hemocult $15.75

 

I do agree with ourLacyandJax: I believe our dogs live in the moment, with no real concept of tomorrow, especially not weeks and months ahead. They know if they are happy and healthy right now -- they don't worry about what tomorrow will bring. They love us and know that we love them in return.

 

You have given your dog much love. Only you can answer what is right for your family.

 

Jane

 

edited to add:

 

Joe gets cytoxan compounded into capsules. I get 15 10 mg capsules from SBH Medical for $34 plus tax.

Cerenia from OSU was $3 per tablet (they had me give one a day for 5 days after each IV chemo)

Edited January 14, 2011 by joejoesmom

[tbhounds]

Ouch--I would look for another clinic-or perhaps making a run to OSU---you really aren't that far. I have to tell you I just glanced at the prices you were quoted and they are off the charts nuts. Do you know that they quoted you $36.78 for diphenhydramine--aka as Benedryl!

If your interested I could give you an idea of how much chemo really costs. I did send you an email at your gmail addy.

Please consider driving up to Ohio State--worth every mile IMHO. Lymphoma can be beat.

[inugrey]

damn, on so many levels.

 

A friend was talking about frustration/expense at South Paws so I had in my head Hope Center would be better.

[3vagreys]

I took Stampede to the oncologist in Richmond, where we live. She recommended several regimens but the one that had the best possible outcome was the most expensive. There was a possibility of 2 good years. The costs she estimated were:

 

401 to 437 for each of 4 doxorubicin treatments

cbc 41

chemo administration 106

diphenhydramine 50

exam 100

doxorubicin 119 to 126

catherterize iv 0 to 29

plus possibly 350 for pre adriamycin screen

 

264 for each of 4 cyclophosphamide treatments

exam 100

cbc 41

chemo admin 50

furosemide 35

cyclophosphamide 50 mg 34

cyclophosmhamide 24 mg 4

 

209 for each of 8 vincristine treatments

chemo admin 106

exam 100

cbc 41

vincristine 62

 

Stampede was 10 1/2 when he was diagnosed. His cancer was level 3. He lived almost a month after he was diagnosed. He had a few bad days, a few good days and the rest was ok days. If I had it to do over again, I don't think I could have changed anything unless I had know he would not get any extra time. Even though I didn't have the money to spend (I'm retired with no retirement plan), I felt it was worth trying.

 

I took Stampede to the oncologist in Richmond, where we live. She recommended several regimens but the one that had the best possible outcome was the most expensive. There was a possibility of 2 good years. The costs she estimated were:

 

401 to 437 for each of 4 doxorubicin treatments

cbc 41

chemo administration 106

diphenhydramine 50

exam 100

doxorubicin 119 to 126

catherterize iv 0 to 29

plus possibly 350 for pre adriamycin screen

 

264 for each of 4 cyclophosphamide treatments

exam 100

cbc 41

chemo admin 50

furosemide 35

cyclophosphamide 50 mg 34

cyclophosmhamide 24 mg 4

 

209 for each of 8 vincristine treatments

chemo admin 106

exam 100

cbc 41

vincristine 62

 

Stampede was 10 1/2 when he was diagnosed. His cancer was level 3. He lived almost a month after he was diagnosed. He had a few bad days, a few good days and the rest was ok days. If I had it to do over again, I don't think I could have changed anything unless I had know he would not get any extra time. Even though I didn't have the money to spend (I'm retired with no retirement plan), I felt it was worth trying.

Oh, I forgot to mention that I tried to get chemo from OSU but they had none to send out.

[Guest K9Cookies]

I know it's expensive down by us. Whatever you decide, just know it's the right thing to do. Even if you start chemo, you can always stop at anytime. Feel free to PM me if you have other questions or need to vent.

[Guest Figmama]

I realize these posts are months old now but due to a recent diagnosis of lymphoma here, I've been checking the boards for other info and experiences.

Due to this site, for some odd reason, having me down as a newbie, I'm unable to e-mail anyone privately.

Seeing the costs of Chemo and times of survival varying, that just does not sound optimal to me or our budget. I have a friend who had one of her performance Shelties diagnosed with lymphoma at a relatively young age. She did the Chemo and it ended up costing her about $14,000!! The dog lived a little over a year after diagnosis, I believe. She does not regret doing it but said she would not do it again. They have no kids so they could somewhat afford it at the time. She said if her dog had been as old as ours, she would not have done it.

[macoduck]

Comet, age 13+

-swollen lymph nodes presented on a Christmas day.

-he'd come to us only 6 months prior w/ no medical history

-we opted for no treatment, given the neglected condition he came to us we were already doing pain management

-when we felt he was ready to go, we did, at <2 weeks from presenting the swollen lymph nodes

-no regrets, only that we wished he didn't have lymphoma

[IndyandHollyluv]

For those of you who may some day have to deal with this on your own, here are the quotes I received for the different treatments.

 

No treatment: prognosis, 2-4 weeks.

 

One L-spar treatment: $407.92. (59 for administration, 44 for disposal, 236 for 10k units of elspar, 36.78 for diphenhydramine, 32.14 for dexamethasone)

 

CCNU/Cerenia: $767.50, every 3 weeks for 6 months. Total: $9210. (44 for chemo recheck, 57 for CBC, 79 for liver profile, 35 for administration/disposal, 223.50 for CCNU 50mg, 65.65 for cerenia, 63.35 for ccnu 7mg, 200 for antibiotics)

 

Modified Wisconsin Protocol: $7300 with no CVCA, $8170 with CVCA. Week 1: Vincristine ($376), Week 2: Cytoxan ($321), Week 3: Adriamycin ($1130), Week 4: CBC ($57). I can provide further breakdowns for each week if anyone wants it. This gives a prognosis of 9-18 months.

 

Prednisone: $32.81. Prognosis 1-3 months.

 

With any of the treatments, the vet would also like to add in a set of chest x-rays to check his heart and lungs. That's about $300. He also offered us the option of a spleen/liver ultrasound ($500), but said that with Aaron's bloodwork, the money's better spent elsewhere. "Anything we do diagnostically at this point could help us pinpoint a treatment plan, but if you can't afford the treatment for it, then it's worthless."

 

 

So that's where I'm at right now. This came at absolutely the worst time, and it's not a decision I expected to have to make for several years. Am I supposed to just sit down and say "Yes, I'm willing to spend X$ for another year, but not Y$"? I can't afford $8000 for chemo treatments. Even if OSU could provide the chemo drugs (and from what I understand, they're backordered for their own patients), it would be over $7k. I feel like I've completely failed. I mean, yes, I knew that hounds could be a huge investment. But can I really put myself so hugely into debt to fight a disease that's always terminal?

 

 

Sigh. What a horrible decision to have to make. I am sorry for you and your pup. As others have stated, there is no wrong decision but it's one only you can make. Last year I lost my heartdog Indy to nasal cancer. There was only one possible outcome for him but the kind vet did offer to refer me to the staff oncologist to discuss pain relief and palliative care. I considered a consultation but then decided against it. I had Indy euthanized two weeks later.

 

I absolutely understand the enormity of the financial burden and the hearbreak of losing your pup. And you're right - you will spend a lot of $$$ to simply postpone the inevitable. But the thought that was front and center of my overloaded brain when I was dealing with Indy was: I didn't want to do anything that would prolong his suffering or cause him more pain. If giving him various drug cocktails would only make him feel worse, cause diarrhea, lose his appetite, etc. -- why on earth would I want to do that to him? He had a terminal diagnosis. And I loved him too much to allow him to languish and suffer because I couldn't do what needed to be done.

 

I promised all my beloved hounds that I would never let them suffer. We can do for animals what we cannot (legally) do for humans. Be benevolent - do what you believe is best for you and your pup. I let Indy go "a day too soon" rather than "a day too late" and I have no regrets about my decision.

 

Be brave.

[fionasmom]

I have dealt with Lymphoma 3 times. Fiona and Andy (greyhounds) were each 8 years old when diagnosed. I used a combination of Lukeran and prednisone rather than chemo.

 

Fiona was diagnosed on April 1 and died on September 14. I did not have it staged because I did not plan to use chemo but she had only one enlarged lymph node in her groin which was found during her dental. On the pred/lukeran combo she had a very gradual decline. The first lymph node remained enlarged but she was pretty much herself for about 3 months then the other lymph nodes became enlarged and she lost energy, lost weight and lost her spark.

 

Andy died of circumstances unrelated to the lymphoma so no real comparison to make.

 

My English Pointer foster Rliley was diagnosed at 5 or 6 years old. The lymphoma was in his blood smear so stage 5. The group would only pay for prednisone. I have to say the pred had an immediate and dramatic effect. The nodes receded to normal and his appetite returned within 24 hours of starting the prednisone. He was full on normal for 5 weeks. THe day the pred stopped working it was immediate and fast moving. I noticed the nodes were swollen in the morning. By evening they were huge and he was having trouble breathing. I took him in to the vet that evening rather than have him continue to deteriorate through the night.

 

If you don't plan to do chemo, then either pred alone or the pred/lukeran combo are probably the option. In retrospect although Fiona lived over 5 months past the diagnosis, it was very difficult to see her decline and to know when to make the final decision.

 

With Riley, although his post diagosis period was shorter, the remission was more dramtic and I knew when it was time to let go.

Edited May 23, 2011 by fionasmom