2 Surgeries==> then IL-2 ==> now Votrient/Pazopanib
Comments
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Phoenix that is great news!Texas_wedge said:Success!
Great stuff Phoenix and well deserved!
Is that 2 x 200 mg. or 2 x 400 mg. daily? How long did it take for side-effects to manifest?
Phoenix that is great news! I'm very glad to hear your success with Votrient . I'm just finishing my 2nd month on it and go for my scan on Monday. I hope I hear as good as news that you got. Have a great week.0 -
Phoenix that is great news!Texas_wedge said:Success!
Great stuff Phoenix and well deserved!
Is that 2 x 200 mg. or 2 x 400 mg. daily? How long did it take for side-effects to manifest?
Phoenix that is great news! I'm very glad to hear your success with Votrient . I'm just finishing my 2nd month on it and go for my scan on Monday. I hope I hear as good as news that you got. Have a great week.0 -
Moraboy, how are you doingMoraboy said:Phoenix that is great news!
Phoenix that is great news! I'm very glad to hear your success with Votrient . I'm just finishing my 2nd month on it and go for my scan on Monday. I hope I hear as good as news that you got. Have a great week.
Moraboy, how are you doing on the Votrient? Any side affects? I hope your scans go well.. please come back and let us know! Wishing you the best!0 -
New found energyangec said:Phoenix, that is AWESOME
Phoenix, that is AWESOME news! I cannot tell you how excited I am to hear of it!! My mom 80 years old will most probably start taking the Votrient in about 10 days from now. I guess your doctor was pretty happy. And to hear that half of the highest dose is working is even better. I am sending a big hug your way and hope you are feeling even better next time we hear from you. What are you using all of that new found energy for? Hope something fun! ENJOY!
Thanks Angec! I am using the energy to ummm-- play with the dog. Well, not really, but he had been depressed-- he'd grab his ball and run to the door and look back at me, and I'd send him outside on his own. Now we walk and play more often.
On the serious side, I have gone back to being active with a couple of community organizations, and I hope to ski this winter and go back to golf in the spring.0 -
2 x200 mgTexas_wedge said:Success!
Great stuff Phoenix and well deserved!
Is that 2 x 200 mg. or 2 x 400 mg. daily? How long did it take for side-effects to manifest?
Tex, that's 2 x 200 for a total of 400 mg daily... Two tablets once a day (at bedtime). I noticed muscle weakness day one, and the side effects increased steadily over the next two weeks. They probably reached a plateau and leveled off after one month. Right now I don't feel much in the line of side effects, except muscle cramps when I slack off on the Gatorade, I have to keep up the Immodium once a day, and I have to stay on top of the blood pressure meds. The skin and hair changes are still coming, as I noticed the other day- even the palms of my hands and the lines in them are lighter.0 -
Stay happy and positive!angec said:Moraboy, how are you doing
Moraboy, how are you doing on the Votrient? Any side affects? I hope your scans go well.. please come back and let us know! Wishing you the best!
Moraboy, I am usually nutso just before a scan, and up to the day of my appointment to get the results. This time, I was wholly positive and had been so for weeks before the scan. I think a positive outlook does the body good! Let us know how it goes!0 -
2 x 200 mgPhoenix Rising said:2 x200 mg
Tex, that's 2 x 200 for a total of 400 mg daily... Two tablets once a day (at bedtime). I noticed muscle weakness day one, and the side effects increased steadily over the next two weeks. They probably reached a plateau and leveled off after one month. Right now I don't feel much in the line of side effects, except muscle cramps when I slack off on the Gatorade, I have to keep up the Immodium once a day, and I have to stay on top of the blood pressure meds. The skin and hair changes are still coming, as I noticed the other day- even the palms of my hands and the lines in them are lighter.
Thanks for the reply, Phoenix - valuable as ever. I've been on 2 x 400 since Friday with no problems so far. Ange will be re-assured by your confirmation on dose level and tolerance - it will be very encouraging for her Mom, if she is starting on it. Avoiding mealtimes seems to be crucial but time of day less critical. I'm taking it around 5.30 p.m. at the moment. I believe there's much to be learnt in chronoimmunology. (I'm finding a clear diurnal rhythm in pain, which gets much worse from about 9 p.m. - hence why I've been reading/writing from 4 a.m. until now, 5 40 a.m. - about to try to sleep some more!) Did you have a particular reason for taking at bedtime? It certainly seems to be right for you.0 -
Hi PhoenixPhoenix Rising said:Votrient working- Lung mets, lymph nodes shrinking/stable
Good news gang!
I had a PET-CT scan last week and a visit to the oncologist today, and the report is pretty good. I knew it would be good because I am feeling energetic with no fatigue, and because the nurse came in and told me the doc said my appointment would be quick.
So anyhoo, the report says there is an old (Old??- What is that?) decrease in size and metabolic activity in the right hilar lymph node-- previously 3.0 cm, now 1.7 cm with a maximum SUV of 10.8, previously 14.5. Right upper lobe nodules w/faint activity appear to be stable whereas 2 adjacent right lower lobe nodules demonstrate decreased actvity with an SUV of 2.5, previously 4.2.
Without writing everything else, it says partial response to therapy.
Shrinkage is good, and stable is good.
Good enough for Thee, good enough for me!
I have been taking Votrient about 2 months at 2 tablets (400 mg) per day. I am also using flax and cottage cheese, and taking Avemar daily. My hair and skin continue to lighten but who cares? My b/p is being managed at 120/80 and the other side effects are not at all harsh.
I also seem to be growing new hair around the forehead and temples, lower than my original hair line-- but it's all light brown.
Great news glad to hear also that the side effects have been manageable.0 -
Shrinking/StablePhoenix Rising said:Votrient working- Lung mets, lymph nodes shrinking/stable
Good news gang!
I had a PET-CT scan last week and a visit to the oncologist today, and the report is pretty good. I knew it would be good because I am feeling energetic with no fatigue, and because the nurse came in and told me the doc said my appointment would be quick.
So anyhoo, the report says there is an old (Old??- What is that?) decrease in size and metabolic activity in the right hilar lymph node-- previously 3.0 cm, now 1.7 cm with a maximum SUV of 10.8, previously 14.5. Right upper lobe nodules w/faint activity appear to be stable whereas 2 adjacent right lower lobe nodules demonstrate decreased actvity with an SUV of 2.5, previously 4.2.
Without writing everything else, it says partial response to therapy.
Shrinkage is good, and stable is good.
Good enough for Thee, good enough for me!
I have been taking Votrient about 2 months at 2 tablets (400 mg) per day. I am also using flax and cottage cheese, and taking Avemar daily. My hair and skin continue to lighten but who cares? My b/p is being managed at 120/80 and the other side effects are not at all harsh.
I also seem to be growing new hair around the forehead and temples, lower than my original hair line-- but it's all light brown.
So glad to hear the good news Phoenix - YES. Quality of life on the upswing for you and your pooch. The only bad thing I read is you'll have to start paying for those highlights at the salon!
Keep up the good work!0 -
Great news!!!Phoenix Rising said:Votrient working- Lung mets, lymph nodes shrinking/stable
Good news gang!
I had a PET-CT scan last week and a visit to the oncologist today, and the report is pretty good. I knew it would be good because I am feeling energetic with no fatigue, and because the nurse came in and told me the doc said my appointment would be quick.
So anyhoo, the report says there is an old (Old??- What is that?) decrease in size and metabolic activity in the right hilar lymph node-- previously 3.0 cm, now 1.7 cm with a maximum SUV of 10.8, previously 14.5. Right upper lobe nodules w/faint activity appear to be stable whereas 2 adjacent right lower lobe nodules demonstrate decreased actvity with an SUV of 2.5, previously 4.2.
Without writing everything else, it says partial response to therapy.
Shrinkage is good, and stable is good.
Good enough for Thee, good enough for me!
I have been taking Votrient about 2 months at 2 tablets (400 mg) per day. I am also using flax and cottage cheese, and taking Avemar daily. My hair and skin continue to lighten but who cares? My b/p is being managed at 120/80 and the other side effects are not at all harsh.
I also seem to be growing new hair around the forehead and temples, lower than my original hair line-- but it's all light brown.
PR,
We never get enough good news around here, so glad the "Big V" is working for you. I hope to hear Tex is on the same path very soon. Don't worry about the added light brown hair, you know what they say about people looking like their dogs, ha, ha.
Rock on,
Gary0 -
Life IS good!alice124 said:Shrinking/Stable
So glad to hear the good news Phoenix - YES. Quality of life on the upswing for you and your pooch. The only bad thing I read is you'll have to start paying for those highlights at the salon!
Keep up the good work!
Phoenix, Wonderful news to hear! This also goes for girlypants. For everyone, this is the news that we all want to hear. It is the hope and aspiration of all of us. It's why we keep the faith. Deal with each hurdle and persist in our quest. The numbers of those improving continues to increase. Let's keep our eyes on the prize!0 -
Tex,Texas_wedge said:2 x 200 mg
Thanks for the reply, Phoenix - valuable as ever. I've been on 2 x 400 since Friday with no problems so far. Ange will be re-assured by your confirmation on dose level and tolerance - it will be very encouraging for her Mom, if she is starting on it. Avoiding mealtimes seems to be crucial but time of day less critical. I'm taking it around 5.30 p.m. at the moment. I believe there's much to be learnt in chronoimmunology. (I'm finding a clear diurnal rhythm in pain, which gets much worse from about 9 p.m. - hence why I've been reading/writing from 4 a.m. until now, 5 40 a.m. - about to try to sleep some more!) Did you have a particular reason for taking at bedtime? It certainly seems to be right for you.
I had a few reasons for taking the Votrient at bedtime--
*Most medication tends to nauseate me, and I simply cannot function normally while nauseated... and I don't want to take nausea medication. If I take it at bedtime, I don't get nauseated.
*I read that cancer is most active at night (which would explain why prior to diagnosis I could not sleep and would awaken at 2:30 a.m. consistently). If cancer is most active at night, then the fight needs to happen at night. Some would say I should instead take it during the day while the cancer is not active-- but I eat all my cancer fighting foods during the day.
*I read that the body uses sleep time to repair itself. Okay-- so take the meds at night and let it take action while your body rests.
*I am taking a dietary supplement for cancer--Avemar, which is said to enhance the beneficial effects of cancer treatments. It should be taken one hour before or after a meal, and two hours before any medication. So I eat a healthy dinner, take Avemar one hour later, and take Votrient two hours after the Avemar.
*And finally, because I want to be certain I don't take the Votrient close to mealtime, which would also lend to my tendency toward nausea. I eat and nibble constantly throughout the day and take my final bites by 7 p.m.0 -
The Rotty and I DO look alikegarym said:Great news!!!
PR,
We never get enough good news around here, so glad the "Big V" is working for you. I hope to hear Tex is on the same path very soon. Don't worry about the added light brown hair, you know what they say about people looking like their dogs, ha, ha.
Rock on,
Gary
Gary, now that you mention it, my eyebrows ARE headed in the same direction as the Rottweiler's eyebrows! Reddish brown!0 -
4 X 200Texas_wedge said:2 x 200 mg
Thanks for the reply, Phoenix - valuable as ever. I've been on 2 x 400 since Friday with no problems so far. Ange will be re-assured by your confirmation on dose level and tolerance - it will be very encouraging for her Mom, if she is starting on it. Avoiding mealtimes seems to be crucial but time of day less critical. I'm taking it around 5.30 p.m. at the moment. I believe there's much to be learnt in chronoimmunology. (I'm finding a clear diurnal rhythm in pain, which gets much worse from about 9 p.m. - hence why I've been reading/writing from 4 a.m. until now, 5 40 a.m. - about to try to sleep some more!) Did you have a particular reason for taking at bedtime? It certainly seems to be right for you.
Tex,I take mine at night after dinner.Since Alice and I ussually eat late this winds up being in the 10:00-11:00 range.My research nurse suggested taking it later in case I developed diarrhea.She felt it might make it easier to deal with this side effect at night.I was also told if a time change was in order,to increase or decrease it one hour at a time so as to keep taking the dosage as close to 24 hours apart as possible.
Ange,thanks for the tip about Vitamin B. I've recently developed the leg cramp side effect,and not being a fan of gatorade or smart water this seems like a reasonable alternative for me.0 -
Dosage and timingone putt said:4 X 200
Tex,I take mine at night after dinner.Since Alice and I ussually eat late this winds up being in the 10:00-11:00 range.My research nurse suggested taking it later in case I developed diarrhea.She felt it might make it easier to deal with this side effect at night.I was also told if a time change was in order,to increase or decrease it one hour at a time so as to keep taking the dosage as close to 24 hours apart as possible.
Ange,thanks for the tip about Vitamin B. I've recently developed the leg cramp side effect,and not being a fan of gatorade or smart water this seems like a reasonable alternative for me.
John and Phoenix, many thanks for the info. I composed and somehow lost a lengthy posting to you both. Can't face trying to rewrite it, so just a few snippets.
John, do remember Gary's sage advice not to take both a laxative and a sedative before going to sleep! Keep us posted on whether Ange's tip about Vit B works against the leg cramps - I think there's a good chance it will. If i need to change my intake time I'll remember to do so gradually to keep the concentration level smooth.
Phoenix, do you think my hair will turn red again? I've had no side-effects so far (5 days in) other than BP shooting up to around 158/94 and losing about 4 lbs, probably due to just not eating so much, as chance would have it.
Hope you both go from strength to strength and that Max does better on the Sutent.0 -
That sounds like a plan! IPhoenix Rising said:New found energy
Thanks Angec! I am using the energy to ummm-- play with the dog. Well, not really, but he had been depressed-- he'd grab his ball and run to the door and look back at me, and I'd send him outside on his own. Now we walk and play more often.
On the serious side, I have gone back to being active with a couple of community organizations, and I hope to ski this winter and go back to golf in the spring.
That sounds like a plan! I love to ski but haven't done so in quite a few years. Almost happened this winter but then mom got sick. As far as walking/playing with that big baby there, I am happy to see that he/she has her best friend back! I am sure the pooch is happy as well
Did you say in the past that you drink gatorade for the camps and spasms or was that someone else? The multi complex vitamin B seems to have worked for some others. Also another thing i wanted to post here. For those that get mouth sores. Be sure to change your toothpase to one that does not contain SLS, it is a contributing factor normally and when taking these meds it is even worse. I use the Ja'son brand for my family. The same goes for mouth wash. Also try not to use anything that contain parabans.. lotions, makeup, shampoo etc. Just another tip i wanted to add.
Stay well Phoenix!!0 -
AVEMAR ..sounds like everyone should be taking this!
Phoenix, one more thing. That Avemar sounds like it is very helpful and vital. Did the doctor prescribe this for you or did you get it over the counter? How did you come to know of it? I was VERY surprised reading about this today! It sounds like everyone should take it. It is also helping your appetite? Thanks for the info.
I found this link on it, is this the same thing?
http://betterhealthinternational.com/ave.asp?gclid=COSq4dvq0bMCFQqe4Aod2gcALA
TW, i suppose you should get some soon...0 -
About Avemarangec said:AVEMAR ..sounds like everyone should be taking this!
Phoenix, one more thing. That Avemar sounds like it is very helpful and vital. Did the doctor prescribe this for you or did you get it over the counter? How did you come to know of it? I was VERY surprised reading about this today! It sounds like everyone should take it. It is also helping your appetite? Thanks for the info.
I found this link on it, is this the same thing?
http://betterhealthinternational.com/ave.asp?gclid=COSq4dvq0bMCFQqe4Aod2gcALA
TW, i suppose you should get some soon...
I have always believed patients in similar situations make great advisors, so I look at what other cancer, and especially kidney cancer patients say helped them. Then I research the info and make a decision based on what's reasonable and makes sense. That line of thinking always works out well for me.
So... I found Avemar through some kidney cancer patient testimonials, read up on it, and found that it is heavily researched, clinically proven, and recommended by oncologists at Sloan-Kettering. I buy it over the counter.
There are are several Avermar-like products out there, but through reading various websites, the original, tested formula is the one sold through www.avemar.com
Once on the site, click on Avemar Worldwide, click on the country you live in, and click on "where to buy" to find the distributor selling the right product. There are only two distributors in the United States, and only one of them has a website, the other is through email. In the U.S. it is sold as AWGE.
It is definitely helping my appetite. I eat large quantities for my size, and I snack in between. I have to be careful to keep it healthy though!0 -
Rock the redTexas_wedge said:Dosage and timing
John and Phoenix, many thanks for the info. I composed and somehow lost a lengthy posting to you both. Can't face trying to rewrite it, so just a few snippets.
John, do remember Gary's sage advice not to take both a laxative and a sedative before going to sleep! Keep us posted on whether Ange's tip about Vit B works against the leg cramps - I think there's a good chance it will. If i need to change my intake time I'll remember to do so gradually to keep the concentration level smooth.
Phoenix, do you think my hair will turn red again? I've had no side-effects so far (5 days in) other than BP shooting up to around 158/94 and losing about 4 lbs, probably due to just not eating so much, as chance would have it.
Hope you both go from strength to strength and that Max does better on the Sutent.
TW, If your hair turns red, rock on! And get some meds for the BP!0 -
AvemarPhoenix Rising said:About Avemar
I have always believed patients in similar situations make great advisors, so I look at what other cancer, and especially kidney cancer patients say helped them. Then I research the info and make a decision based on what's reasonable and makes sense. That line of thinking always works out well for me.
So... I found Avemar through some kidney cancer patient testimonials, read up on it, and found that it is heavily researched, clinically proven, and recommended by oncologists at Sloan-Kettering. I buy it over the counter.
There are are several Avermar-like products out there, but through reading various websites, the original, tested formula is the one sold through www.avemar.com
Once on the site, click on Avemar Worldwide, click on the country you live in, and click on "where to buy" to find the distributor selling the right product. There are only two distributors in the United States, and only one of them has a website, the other is through email. In the U.S. it is sold as AWGE.
It is definitely helping my appetite. I eat large quantities for my size, and I snack in between. I have to be careful to keep it healthy though!
Actually Ange, I already do. At least I have, for many years, used something similar (maybe superior?) - straight wheatgerm, which, together with milled flaxseed, I sprinkle liberally over my porridge. That's basically all I have for breakfast now, after stopping grapefruit juice now that I'm on Votrient (though the jury's still out on that one!). Avemar has had a huge promotion in the last couple of years in the UK. The one thing that strikes me is that it looks like a horrendously pricey way of eating wheatgerm!!
I use that research algorithm too, Phoenix, and I commend it also. My version is a bit simpler, though - I rely almost entirely on what you say, your postings invariably being highly informative and useful.
Is Rotty your pooch's name? Maybe eats like you so that's why (s)he's always seen to be lying down Should maybe take up golf and skiing! 0
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