AndyD

Hey Lisa,

I did biochemo in 2006 at Kaiser Permanente Riverside with a similar coctail as RMcLegals. I agree that it was difficult. For the treatment you are heavily drugged and won't remember much of it. I do remember the part I hated most was when my temp went up…I had total chills and they either get you to sleep on this ice mat or stuff more ice bags in your armpits, and groin…not the feeling you want when you have the chills. lol The hard part is the month after treatment…you can feel like death. My white blood cells were close to 0 which makes you feel terrible. I believe the stats are something like a 15%-20% of patients have a long term durable response. It helped me but for only 6-12 months.

After biochemo you can also consider IL2
http://www.proleukin.com/

The response rate is around the same. You are sicker in the hospital (but so drugged you won'r remember) but recover much faster at home. This treatment again only got me 6-12 of stable diseases.

As others have said, you can also consider ipi now. Of the three it has the least horrible side effects when controlled properly.

hope this info helps.

Hey Lisa,

I did biochemo in 2006 at Kaiser Permanente Riverside with a similar coctail as RMcLegals. I agree that it was difficult. For the treatment you are heavily drugged and won't remember much of it. I do remember the part I hated most was when my temp went up…I had total chills and they either get you to sleep on this ice mat or stuff more ice bags in your armpits, and groin…not the feeling you want when you have the chills. lol The hard part is the month after treatment…you can feel like death. My white blood cells were close to 0 which makes you feel terrible. I believe the stats are something like a 15%-20% of patients have a long term durable response. It helped me but for only 6-12 months.

After biochemo you can also consider IL2
http://www.proleukin.com/

The response rate is around the same. You are sicker in the hospital (but so drugged you won'r remember) but recover much faster at home. This treatment again only got me 6-12 of stable diseases.

As others have said, you can also consider ipi now. Of the three it has the least horrible side effects when controlled properly.

hope this info helps.

He Cheryl, I just found your post today. I'm on a similar treatment (Avastin and Taxotere). Taxotere is also called docetaxel which sounds like it might be a similar family of drugs to your abraxane which is also called paclitaxel. I've only had 1 treatment so far and haven't been too sick yet. I expect to lose my hair next week. I'm already tired and weak from previous ipi and cancer progression so I might not be feeling the full effects.

From what I've found with google research, it seems like the combos have maybe a 50% chance at tumor reduction, then a small chance at progression free survival.

Hope to hear if your hub is responding.

Andy, stage IV

He Cheryl, I just found your post today. I'm on a similar treatment (Avastin and Taxotere). Taxotere is also called docetaxel which sounds like it might be a similar family of drugs to your abraxane which is also called paclitaxel. I've only had 1 treatment so far and haven't been too sick yet. I expect to lose my hair next week. I'm already tired and weak from previous ipi and cancer progression so I might not be feeling the full effects.

From what I've found with google research, it seems like the combos have maybe a 50% chance at tumor reduction, then a small chance at progression free survival.

Hope to hear if your hub is responding.

Andy, stage IV

I grew up in Canada but have been an American citizen for the last 20 years. My father is a doctor in Canada. My melanoma started in my left leg and my aunt in Canada also has melanoma in her left leg. From time to time she and I compare notes. There are pros and cons of each system.

My wife and I pay $500 a month each for healthcare with a $4,000 deductible each. I choose that deductible level and have hit it twice (mainly because of 5 day hospital stays for bi-chemo and IL2). You either pay for healthcare out of your pocket, or you pay through taxes…there is no free lunch.

I believe in Canada the PST and GST is 13% or 15%? If you spent $25,000 a year on 'stuff'…that is 5% x 25,000 = $1,250 more paid than American counterparts. If you use an automobile you play $4 a gallon of gas instead of $3…so if you spend say…$50 a week on gas in the US…you spend almost $1,000 a year more in fuel. If you drink liquor or smoke, and spend $1,000 a year on booze, you spend $1,000 more in canada. That's $3,000 right there in sales tax, gas, and liquor…which easily buys quality health insurance in america.

I've probably had 15 PET scans in 10 years in american (I believe they cost roughly $5k each on the street? My co-pay is $450)…my Aunt has had zero in Ontario…why? Because in Canada, the PET is still considered experimental (I don't know if this has changed recently?). I don't think I'm over stating when saying a PET scan is 'standard' now when assessing melanoma and other cancers.

In the past I've emailed my oncologist about new tumor(s) and been operated on the 'next day'…I think this would be difficult in Canada. My doctors did not blink when offering me bio-chemo and IL2 (expensive treatments).

I think my aunt would say she has had excellent care in Canada. I would as well say I have had excellent care in America. I don't mind paying for my healthcare out of pocket.

hope this info is useful

I grew up in Canada but have been an American citizen for the last 20 years. My father is a doctor in Canada. My melanoma started in my left leg and my aunt in Canada also has melanoma in her left leg. From time to time she and I compare notes. There are pros and cons of each system.

My wife and I pay $500 a month each for healthcare with a $4,000 deductible each. I choose that deductible level and have hit it twice (mainly because of 5 day hospital stays for bi-chemo and IL2). You either pay for healthcare out of your pocket, or you pay through taxes…there is no free lunch.

I believe in Canada the PST and GST is 13% or 15%? If you spent $25,000 a year on 'stuff'…that is 5% x 25,000 = $1,250 more paid than American counterparts. If you use an automobile you play $4 a gallon of gas instead of $3…so if you spend say…$50 a week on gas in the US…you spend almost $1,000 a year more in fuel. If you drink liquor or smoke, and spend $1,000 a year on booze, you spend $1,000 more in canada. That's $3,000 right there in sales tax, gas, and liquor…which easily buys quality health insurance in america.

I've probably had 15 PET scans in 10 years in american (I believe they cost roughly $5k each on the street? My co-pay is $450)…my Aunt has had zero in Ontario…why? Because in Canada, the PET is still considered experimental (I don't know if this has changed recently?). I don't think I'm over stating when saying a PET scan is 'standard' now when assessing melanoma and other cancers.

In the past I've emailed my oncologist about new tumor(s) and been operated on the 'next day'…I think this would be difficult in Canada. My doctors did not blink when offering me bio-chemo and IL2 (expensive treatments).

I think my aunt would say she has had excellent care in Canada. I would as well say I have had excellent care in America. I don't mind paying for my healthcare out of pocket.

hope this info is useful

Hey Val,

I'm in a similar spot as you…after my 4th ipi round my lung and calf mets shrunk but groin mets seem to be growing. I'm hoping to repeat the trial if allowed (I find out in the next couple of weeks). MIF did a webinar a month or so ago with Dr. Wollchok at Sloan Ketting on ipi. I made copies of the slides from the show for myself to better understand ipi trials…you might check them out
http://goo.gl/gy79D

They re-induced 9 patients and these slides may show that patients who partially respond, are good candidates for re-induction.
http://goo.gl/CWiWy
http://goo.gl/hCvxU

I spoke to Dr. Wollchok for a few minutes on the phone and he said they didn't have enough data yet but felt someone like myself who had some tumors respond, may consider re-induction. The same may be true for yourself.

You may of seen the seminar already but if you haven't, here is the full link
http://www.melanomaintl.org/news/Webinarx_Ipilimumab_x_Antibodies.html

I hope this info is useful

Andy

Hey Val,

I'm in a similar spot as you…after my 4th ipi round my lung and calf mets shrunk but groin mets seem to be growing. I'm hoping to repeat the trial if allowed (I find out in the next couple of weeks). MIF did a webinar a month or so ago with Dr. Wollchok at Sloan Ketting on ipi. I made copies of the slides from the show for myself to better understand ipi trials…you might check them out
http://goo.gl/gy79D

They re-induced 9 patients and these slides may show that patients who partially respond, are good candidates for re-induction.
http://goo.gl/CWiWy
http://goo.gl/hCvxU

I spoke to Dr. Wollchok for a few minutes on the phone and he said they didn't have enough data yet but felt someone like myself who had some tumors respond, may consider re-induction. The same may be true for yourself.

You may of seen the seminar already but if you haven't, here is the full link
http://www.melanomaintl.org/news/Webinarx_Ipilimumab_x_Antibodies.html

I hope this info is useful

Andy

Hey Douglas,

I didn't get any new tumors while on ipi. I had one tumor that was maybe the size of a quarter on my left calf and it is almost completely gone now. My left groin tumors seemed to stay stable during the treatment, but lately I am almost certain they are growing at an increasing rate and starting to cause a little pain at night.

There are several side effects that go with ipi and the best thing you can do is stay in constant contact with your doctor in email or phone and do not be embarassed telling them anything. I hear people often get rashes and itch…I was fortunate not to get that since I've had it with IL2 to the point I ran to emerge one night at 4am in so much itch pain lol. I did get the diarrhea to the point they were close to hospitalizing (what happens is that you start to bleed and they get concerned). Fortunately prescription drugs and quick action fixed things at home.

One thing that you don't hear as much about ipi is that for me and a few others, you can get really tired and lethargic and depressed. This may simply be cancer fatigue but I think much of it is ipi side effects. I'm several months out of treatment and don't feel well. I don't feel like myself and I don't feel like leaving the house. This comes and goes…I may feel well for one week and then poor for three. I think in time this will lesson, but you do pay a price for being on ipi. It's certainly not as bad as recovering from bio-chemo or IL2 but its not great either.

I hope this info is useful and please feel free to ask me further questions at any time.

Hey Val,

I hope you are able to convince your doctors to re-induce. I have my meeting on the 28th and then I'm assuming I will need scans in early Jan. I'll let you know how it goes. I'm hoping to re-induce in late Jan or early Feb if all goes well. Also from talking with Dr. W, he said they sometimes surgically remove one or some tumors that don't respond if others do…I am asking my oncologist and surgical oncologist if they would consider this again (in the past they have been against it).

hope to hear how things go for you as well. I often feel desperate as well. Shoot me a note any time.

Andy

Hey Douglas,

I didn't get any new tumors while on ipi. I had one tumor that was maybe the size of a quarter on my left calf and it is almost completely gone now. My left groin tumors seemed to stay stable during the treatment, but lately I am almost certain they are growing at an increasing rate and starting to cause a little pain at night.

There are several side effects that go with ipi and the best thing you can do is stay in constant contact with your doctor in email or phone and do not be embarassed telling them anything. I hear people often get rashes and itch…I was fortunate not to get that since I've had it with IL2 to the point I ran to emerge one night at 4am in so much itch pain lol. I did get the diarrhea to the point they were close to hospitalizing (what happens is that you start to bleed and they get concerned). Fortunately prescription drugs and quick action fixed things at home.

One thing that you don't hear as much about ipi is that for me and a few others, you can get really tired and lethargic and depressed. This may simply be cancer fatigue but I think much of it is ipi side effects. I'm several months out of treatment and don't feel well. I don't feel like myself and I don't feel like leaving the house. This comes and goes…I may feel well for one week and then poor for three. I think in time this will lesson, but you do pay a price for being on ipi. It's certainly not as bad as recovering from bio-chemo or IL2 but its not great either.

I hope this info is useful and please feel free to ask me further questions at any time.

Hey Val,

I hope you are able to convince your doctors to re-induce. I have my meeting on the 28th and then I'm assuming I will need scans in early Jan. I'll let you know how it goes. I'm hoping to re-induce in late Jan or early Feb if all goes well. Also from talking with Dr. W, he said they sometimes surgically remove one or some tumors that don't respond if others do…I am asking my oncologist and surgical oncologist if they would consider this again (in the past they have been against it).

hope to hear how things go for you as well. I often feel desperate as well. Shoot me a note any time.

Andy