2 Surgeries==> then IL-2 ==> now Votrient/Pazopanib

Phoenix Rising
Phoenix Rising Member Posts: 170
in Kidney Cancer #1
Hello All,

The Onc told me the Interleukin did not work (although I am inclined to disagree), so we are moving on to Votrient. The last MRI before the IL-2 was done in February 2012, and the two rounds of IL-2 were done in June, and July. The MRI/PET scan performed after the IL-2 treatment showed slight increase, but I believe the distance between the two scans can account for the slight increase, and the increase didn't occur AFTER the IL-2. I say this because I felt like a million bucks after the side effects from IL-2 wore off. I felt better than I did before the IL-2, and I had mental clarity afterward. I could always tell when I had metasticism because I would have what I describe as brain fog. After the mets are removed-- my head always clears up, and my head cleared after the IL-2.


Well anyhoo, I just began th 1st dose of Votrient last Tuesday. The Onc said it is well tolerated in most people, and he told me to work up to three pills (600 mg) per day, and that most people don't take 4/day. So Tuesday and Wednesday I took 1 pill before bed (someone said bedtime is the best time-- to avoid the nausea), and I immediately felt a little muscle weakness in the legs the next day. I also had a little diarrhea the first two mornings but no problem since then.

Then I bumped it up to 2 pills Thursday and the muscle weakness is gone. I had a bout with nausea and vomiting last night, but I believe it was due to the Naproxen I took for pelvic pain related to a recent UFE procedure. I violated my self imposed rule of staying in good enough health that I don't have to take any other presciption medication while taking Votrient, but I caved-in and took some Naproxen. No more pain killer for me; I can deal with the pelvic pain and it will go away as time passes. I am not nauseated today.

I am still taking 2 Votrient pills before bed, will take 3 beginning next Thursday, and will see the Onc the Thursday after that. I have had no other symptoms yet, and I hope it stays that way.

I should note something very important--

* I began using the Budwig Diet in 2009 and was NED until I slacked off. Then the lung mets showed up in 2011. Wish I could go back and do it right!

* I am now following the basics of the Budwig Diet (organic fruits and veggies, juicing, no meat, no sugar, no oils), but I am not doing the flax portion of it now because of the blood thinning properties of flax and the Votrient side effect that does not allow wounds to heal or slows healing.

* I am taking Avemar/Ave/AWGE in the morning and I start the day feeling great. I began taking it two weeks before I started Votrient. Avemar is supposed to ease side effects of chemotherapy, and help with appetite, as well as help boost the effect of the treatment. Now I have a huge appetite-- so far, so good.

* I drink Essiac tea in the morning and before bed- about an hour before the Votrient. I sarted drinking it about a month ago.

* I do coffee enemas once each month.

* If I start to develop any other side effects, particlarly nausea, I am going to see an acupuncturist.

I work a nine to five desk job every day and I am hoping I will not have any debilitating side effects from the Votrient so I can continue to work and receive these great health care benefits! I have played 18 holes golf regularly, and gone snow skiing each winter since my diagnosis, although I haven't played much golf this summer because of the IL-2 and the UFE.

*************************************************************************************

2009-- Dx w/ stage 4 papillary renal cell carcinoma-- Right rad nephrectomy, IVC thrombectomy, lymph resect- mets in 3 of 9 nodes (I think)
2011-- Video assisted thoracic surgery to remove a single mets in right lung
2012-- Multiple mets in both lungs
2012-- Two rounds of IL-2, showed slight increase in subsequent MRI/PET scan
2012-- Prescribed Votrient
«134

Comments

  • Phoenix Rising
    Phoenix Rising Member Posts: 170
    #2
    Cautiously optimistic
    I made a visit to the oncologist yesterday-- my first since beginning Votrient. He told me he could tell the medicine was in my body and having some effect because my blood pressure jumped up. It is normally 120/80 or lower (as low as 105/65 when I was off from work), but yesterday it was 148/100. He said the Votient works by stopping extra vascularity, and the rise in blood pressure indicates that action is probably taking place, since blood pressure involves vascularity. Those weren't his exact words, but that's what I got out of it.

    I still have the lower back pain, so he wants me to try some over-the-counter Tylenol and monitor my blood pressure, to make sure my pressure is not higher because of the pain.

    He also prescribed a low dosage of blood pressure medication. I am to begin taking the medication if the bottom number in my blood pressure moves up.

    I am not experiencing much in the line of side effects right now... A little stomach rumbling here and there, but no nausea (which is the WORST to me), and Gatorade has stopped the muscle cramps. A few days this week, I felt more clear-headed and energetic than I have in more than 2 or 3 years.
  • Max Power
    Max Power Member Posts: 60
    #3
    Phoenix Rising said:

    Cautiously optimistic
    I made a visit to the oncologist yesterday-- my first since beginning Votrient. He told me he could tell the medicine was in my body and having some effect because my blood pressure jumped up. It is normally 120/80 or lower (as low as 105/65 when I was off from work), but yesterday it was 148/100. He said the Votient works by stopping extra vascularity, and the rise in blood pressure indicates that action is probably taking place, since blood pressure involves vascularity. Those weren't his exact words, but that's what I got out of it.

    I still have the lower back pain, so he wants me to try some over-the-counter Tylenol and monitor my blood pressure, to make sure my pressure is not higher because of the pain.

    He also prescribed a low dosage of blood pressure medication. I am to begin taking the medication if the bottom number in my blood pressure moves up.

    I am not experiencing much in the line of side effects right now... A little stomach rumbling here and there, but no nausea (which is the WORST to me), and Gatorade has stopped the muscle cramps. A few days this week, I felt more clear-headed and energetic than I have in more than 2 or 3 years.

    Hi Phoenix
    I followed kinda the same path. One surgery, IL-2 and Votrient. I only took Votrient for 3 months (2012), 4 pills a day according to my notes. I then had a slight progression, plus high BP so they took me off.

    My first few weeks on Votrient were fraught with side-effects, and I got depressed. Then the side-effects lightened up considerably and I felt pretty good. I mentioned this to the doc and he said most people have it worse in the beginning. I kinda suggested that he tell patients that in future.

    So now I'm on the dreaded Sutent to which people react pretty much the same as they did to Votrient but moreso.

    Here's hoping your Votrient works.
  • Max Power
    Max Power Member Posts: 60
    #4
    Phoenix Rising said:

    Cautiously optimistic
    I made a visit to the oncologist yesterday-- my first since beginning Votrient. He told me he could tell the medicine was in my body and having some effect because my blood pressure jumped up. It is normally 120/80 or lower (as low as 105/65 when I was off from work), but yesterday it was 148/100. He said the Votient works by stopping extra vascularity, and the rise in blood pressure indicates that action is probably taking place, since blood pressure involves vascularity. Those weren't his exact words, but that's what I got out of it.

    I still have the lower back pain, so he wants me to try some over-the-counter Tylenol and monitor my blood pressure, to make sure my pressure is not higher because of the pain.

    He also prescribed a low dosage of blood pressure medication. I am to begin taking the medication if the bottom number in my blood pressure moves up.

    I am not experiencing much in the line of side effects right now... A little stomach rumbling here and there, but no nausea (which is the WORST to me), and Gatorade has stopped the muscle cramps. A few days this week, I felt more clear-headed and energetic than I have in more than 2 or 3 years.

    Hi Phoenix
    I followed kinda the same path. One surgery, IL-2 and Votrient. I only took Votrient for 3 months (2012), 4 pills a day according to my notes. I then had a slight progression, plus high BP so they took me off.

    My first few weeks on Votrient were fraught with side-effects, and I got depressed. Then the side-effects lightened up considerably and I felt pretty good. I mentioned this to the doc and he said most people have it worse in the beginning. I kinda suggested that he tell patients that in future.

    So now I'm on the dreaded Sutent to which people react pretty much the same as they did to Votrient but moreso.

    Here's hoping your Votrient works.
  • Max Power
    Max Power Member Posts: 60
    #5
    Phoenix Rising said:

    Cautiously optimistic
    I made a visit to the oncologist yesterday-- my first since beginning Votrient. He told me he could tell the medicine was in my body and having some effect because my blood pressure jumped up. It is normally 120/80 or lower (as low as 105/65 when I was off from work), but yesterday it was 148/100. He said the Votient works by stopping extra vascularity, and the rise in blood pressure indicates that action is probably taking place, since blood pressure involves vascularity. Those weren't his exact words, but that's what I got out of it.

    I still have the lower back pain, so he wants me to try some over-the-counter Tylenol and monitor my blood pressure, to make sure my pressure is not higher because of the pain.

    He also prescribed a low dosage of blood pressure medication. I am to begin taking the medication if the bottom number in my blood pressure moves up.

    I am not experiencing much in the line of side effects right now... A little stomach rumbling here and there, but no nausea (which is the WORST to me), and Gatorade has stopped the muscle cramps. A few days this week, I felt more clear-headed and energetic than I have in more than 2 or 3 years.

    Hi Phoenix
    I followed kinda the same path. One surgery, IL-2 and Votrient. I only took Votrient for 3 months (2012), 4 pills a day according to my notes. I then had a slight progression, plus high BP so they took me off.

    My first few weeks on Votrient were fraught with side-effects, and I got depressed. Then the side-effects lightened up considerably and I felt pretty good. I mentioned this to the doc and he said most people have it worse in the beginning. I kinda suggested that he tell patients that in future.

    So now I'm on the dreaded Sutent to which people react pretty much the same as they did to Votrient but moreso.

    Here's hoping your Votrient works.
  • Phoenix Rising
    Phoenix Rising Member Posts: 170
    #6
    Max Power said:

    Hi Phoenix
    I followed kinda the same path. One surgery, IL-2 and Votrient. I only took Votrient for 3 months (2012), 4 pills a day according to my notes. I then had a slight progression, plus high BP so they took me off.

    My first few weeks on Votrient were fraught with side-effects, and I got depressed. Then the side-effects lightened up considerably and I felt pretty good. I mentioned this to the doc and he said most people have it worse in the beginning. I kinda suggested that he tell patients that in future.

    So now I'm on the dreaded Sutent to which people react pretty much the same as they did to Votrient but moreso.

    Here's hoping your Votrient works.

    Thanks!
    Thanks Max! I took my first high BP dose today and my BP didn't go down... although it probably takes a few days to kick in. I am reading my BP 4, 5, 6 times a day. I really want to stay on the Votrient bbecause the side effects are so mild, and keeping that BP low is key.

    Be sure to let us know how the Votrient works for you! We're all pulling for you!
  • Tom62
    Tom62 Member Posts: 5
    #7
    Phoenix Rising said:

    Thanks!
    Thanks Max! I took my first high BP dose today and my BP didn't go down... although it probably takes a few days to kick in. I am reading my BP 4, 5, 6 times a day. I really want to stay on the Votrient bbecause the side effects are so mild, and keeping that BP low is key.

    Be sure to let us know how the Votrient works for you! We're all pulling for you!

    Votrient
    My wife has been on Votrient for 8 weeks. Started off taking 4 but after three weeks her liver emzymes became elevated as well as higher than her normal high blood pressure. After extreme nausea and dehydration they took her off for a week, then started back with two pills, she lasted a week. Yesterday her emzymes level went back up so they took her off again. I am not sure what is next. We are being treated locally, but go to MDA in Houston every 8 weeks; our next appointment is Saturday. She did alright most of the time but the liver function is of great concern with Votrient. I hope you have no problems, we are new to this and still trying to learn the termology.
  • Phoenix Rising
    Phoenix Rising Member Posts: 170
    #8
    Tom62 said:

    Votrient
    My wife has been on Votrient for 8 weeks. Started off taking 4 but after three weeks her liver emzymes became elevated as well as higher than her normal high blood pressure. After extreme nausea and dehydration they took her off for a week, then started back with two pills, she lasted a week. Yesterday her emzymes level went back up so they took her off again. I am not sure what is next. We are being treated locally, but go to MDA in Houston every 8 weeks; our next appointment is Saturday. She did alright most of the time but the liver function is of great concern with Votrient. I hope you have no problems, we are new to this and still trying to learn the termology.

    Votrient doses
    Hi Tom,
    I am surprised the doctor did not recommend starting off slowly. I started with one tablet, then moved to two. When I last went to the oncologist, my BP had risen, but everything else was okay. He told me not to go to 3 tablets until we get the BP under control. He also stated we may find that 2 is enough if 3 is too rough once I begin taking three.

    I noticed 2 days ago that I have developed splinter hemorrhages under my nails, and did some internet digging to find it is a side effect of Votrient. I will be mentioning this on my next visit.

    All the best to you and your wife! It just may be that Votrient is not right for her, and there are many other options for targeted therapy at this time.
  • Max Power
    Max Power Member Posts: 60
    #9
    Phoenix Rising said:

    Votrient doses
    Hi Tom,
    I am surprised the doctor did not recommend starting off slowly. I started with one tablet, then moved to two. When I last went to the oncologist, my BP had risen, but everything else was okay. He told me not to go to 3 tablets until we get the BP under control. He also stated we may find that 2 is enough if 3 is too rough once I begin taking three.

    I noticed 2 days ago that I have developed splinter hemorrhages under my nails, and did some internet digging to find it is a side effect of Votrient. I will be mentioning this on my next visit.

    All the best to you and your wife! It just may be that Votrient is not right for her, and there are many other options for targeted therapy at this time.

    side effects
    I too had the common splinter hemorrhages and the doc's didn't think it warranted any action. Wouldn't it be nice if they gave you a list of side-effects so we didn't have to be surprised and run to Google!

    Also, be prepared for your hair to turn pure white. When I got off Votrient my hair was all white and started growing dark again, but then when I started Sutent it started getting silver. This made my hair striped. Too funny!
  • Phoenix Rising
    Phoenix Rising Member Posts: 170
    #10
    Max Power said:

    side effects
    I too had the common splinter hemorrhages and the doc's didn't think it warranted any action. Wouldn't it be nice if they gave you a list of side-effects so we didn't have to be surprised and run to Google!

    Also, be prepared for your hair to turn pure white. When I got off Votrient my hair was all white and started growing dark again, but then when I started Sutent it started getting silver. This made my hair striped. Too funny!

    I prefer my snow in the Rocky Mountains
    .... not in my hair. But I guess I'll have to deal with it.

    I have noticed some gray popping around the edges, but I was already headed in that direction. My onc said my hair may get "lighter," but he certainly didn't mention WHITE hair! We definitely need a list of things to expect!

    I also expected taste changes, but just about everything tastes like metal-- even air tastes like metal. I can taste sweet,and spicy, but cannot taste salt.
  • Phoenix Rising
    Phoenix Rising Member Posts: 170
    #11
    Oncologist visit 10/08/12
    Hey Kids,
    I went to the onc Monday and he likes the way things are going so far. The lab was slow getting my blood results back, so my appointment was over before the results came back.

    I reported a laundry list of side effects on this visit. I have:

    *Splinter hemorrhages-- he said that is to be expected
    *Hypopigmentation/light spots on my face-- expected action of the med
    *My dark brown hair has a few shiny copper strands around the temples-- he said no big deal
    *Very short hairs on my arms are white-- (just noticed today)
    *Elevated blood pressure-- he said this shows the med is doing something in my system, and the intended action of the votrient is to interfere with vascularity-- so HBP is to be expected. He increased my BP meds to 2 tabs a day since 1 tab was keeping me stable but not lowereing BP.
    *Leg cramps-- I drink gatorade and haven't had trouble with them when I drink it.
    *Diarrhea-- he said take Immodium but I am hard-headed and haven't purchased any yet.
    *Tire easily walking distances or up stairs-- he said it happens
    *Hot flushes-- I thought I was having hot FLASHES until I read yesterday that hot FLUSHES were a side effect. After I read up on hot flushes I realized I was flushing and not flashing.... so I didn't mention that one to him.
    *Muscle weakness- forgot to mention
    *Achy joints

    So the onc said he is going to keep me on 2 tabs (400 mg), since increasing my dosage will only increase the side effects. He said the side effects I have now are enough to say the medicine is in my system in ample amounts for my body. My next scan will be in November andhe said we'll decide where to go from there.

    I told him although I have a list of side effects, none of them are severe enough to make me want to stop. It's really a walk in the park compared to what I have seen others go through.
  • angec
    angec Member Posts: 924 Member
    #12
    Phoenix Rising said:

    Oncologist visit 10/08/12
    Hey Kids,
    I went to the onc Monday and he likes the way things are going so far. The lab was slow getting my blood results back, so my appointment was over before the results came back.

    I reported a laundry list of side effects on this visit. I have:

    *Splinter hemorrhages-- he said that is to be expected
    *Hypopigmentation/light spots on my face-- expected action of the med
    *My dark brown hair has a few shiny copper strands around the temples-- he said no big deal
    *Very short hairs on my arms are white-- (just noticed today)
    *Elevated blood pressure-- he said this shows the med is doing something in my system, and the intended action of the votrient is to interfere with vascularity-- so HBP is to be expected. He increased my BP meds to 2 tabs a day since 1 tab was keeping me stable but not lowereing BP.
    *Leg cramps-- I drink gatorade and haven't had trouble with them when I drink it.
    *Diarrhea-- he said take Immodium but I am hard-headed and haven't purchased any yet.
    *Tire easily walking distances or up stairs-- he said it happens
    *Hot flushes-- I thought I was having hot FLASHES until I read yesterday that hot FLUSHES were a side effect. After I read up on hot flushes I realized I was flushing and not flashing.... so I didn't mention that one to him.
    *Muscle weakness- forgot to mention
    *Achy joints

    So the onc said he is going to keep me on 2 tabs (400 mg), since increasing my dosage will only increase the side effects. He said the side effects I have now are enough to say the medicine is in my system in ample amounts for my body. My next scan will be in November andhe said we'll decide where to go from there.

    I told him although I have a list of side effects, none of them are severe enough to make me want to stop. It's really a walk in the park compared to what I have seen others go through.

    Phoenix, glad you are
    Phoenix, glad you are managing well! I read that someone took vitamin b and the body aches and muscle cramps/pains went away. Maybe you can ask the doctor if you can take it. Wishing you the best on your next scans!
  • Texas_wedge
    Texas_wedge Member Posts: 2,798
    #13
    angec said:

    Phoenix, glad you are
    Phoenix, glad you are managing well! I read that someone took vitamin b and the body aches and muscle cramps/pains went away. Maybe you can ask the doctor if you can take it. Wishing you the best on your next scans!

    Side-effects
    Ange, you're so good at picking up potentially useful tips that maybe you should keep an inventory of them somewhere with a gloss on where you found them? I think I'm going to have to find time to get more organised and marshall (!) my material better to optimise use of it.

    Tom, how is your Wife doing now - well, we hope?

    Max, have your apprehensions that the s-e's of Sutent would be similar to Votrient but worse been borne out and how are you responding to Sutenet, if it isn't too soon to know?

    Yet another brilliantly informative posting Phoenix! Here's hoping you add weight to the suspicion that a spell on HDIL2 has the latent effect of improving response to subsequent therapies. Admiration for your tenacity and your sensible cost-benefit appraisal - I'm sure it's much easier said than done, so I hope the support we offer each other here helps to keep you forging ahead.
  • angec
    angec Member Posts: 924 Member
    #14
    Texas_wedge said:

    Side-effects
    Ange, you're so good at picking up potentially useful tips that maybe you should keep an inventory of them somewhere with a gloss on where you found them? I think I'm going to have to find time to get more organised and marshall (!) my material better to optimise use of it.

    Tom, how is your Wife doing now - well, we hope?

    Max, have your apprehensions that the s-e's of Sutent would be similar to Votrient but worse been borne out and how are you responding to Sutenet, if it isn't too soon to know?

    Yet another brilliantly informative posting Phoenix! Here's hoping you add weight to the suspicion that a spell on HDIL2 has the latent effect of improving response to subsequent therapies. Admiration for your tenacity and your sensible cost-benefit appraisal - I'm sure it's much easier said than done, so I hope the support we offer each other here helps to keep you forging ahead.

    You are correct TW. I really
    You are correct TW. I really need to keep a tighter knit of the information. I always have 20 things going on at one time and try to do it all. But if I am going to do it all I might as well try harder to get it right! RIGHT? LOL

    However, i did find out two things. That link for "Votrient Side Affects" listed here is very, very informative. I see there that when taking Votrient some have been having issues with mouth sores (incidently I noticed some Sutent users said the same thing), taking a vitamin B complex helped very well. Vitamin B Complex also helped those with muscle spasms. A Magnesium pill also helped with muscle spasms.

    http://csn.cancer.org/node/244848

    I am trying to find out though if Votrient has chemo agents in it, I have not been able to get a definite answer. The oncologist had told me it did have chemo in it but I don't see the ingredients listed under the information label.

    I would rather mom go the non-chemo way if need be come November when she repeats her scans.

    TW, tomorrow is the day. I know you are doing your homework! I can't wait for your treatment to begin. Looking forward to some more good news!!
  • angec
    angec Member Posts: 924 Member
    #15
    Texas_wedge said:

    Side-effects
    Ange, you're so good at picking up potentially useful tips that maybe you should keep an inventory of them somewhere with a gloss on where you found them? I think I'm going to have to find time to get more organised and marshall (!) my material better to optimise use of it.

    Tom, how is your Wife doing now - well, we hope?

    Max, have your apprehensions that the s-e's of Sutent would be similar to Votrient but worse been borne out and how are you responding to Sutenet, if it isn't too soon to know?

    Yet another brilliantly informative posting Phoenix! Here's hoping you add weight to the suspicion that a spell on HDIL2 has the latent effect of improving response to subsequent therapies. Admiration for your tenacity and your sensible cost-benefit appraisal - I'm sure it's much easier said than done, so I hope the support we offer each other here helps to keep you forging ahead.

    You are correct TW. I really
    You are correct TW. I really need to keep a tighter knit of the information. I always have 20 things going on at one time and try to do it all. But if I am going to do it all I might as well try harder to get it right! RIGHT? LOL

    However, i did find out two things. That link for "Votrient Side Affects" listed here is very, very informative. I see there that when taking Votrient some have been having issues with mouth sores (incidently I noticed some Sutent users said the same thing), taking a vitamin B complex helped very well. Vitamin B Complex also helped those with muscle spasms. A Magnesium pill also helped with muscle spasms.

    http://csn.cancer.org/node/244848

    I am trying to find out though if Votrient has chemo agents in it, I have not been able to get a definite answer. The oncologist had told me it did have chemo in it but I don't see the ingredients listed under the information label.

    I would rather mom go the non-chemo way if need be come November when she repeats her scans.

    TW, tomorrow is the day. I know you are doing your homework! I can't wait for your treatment to begin. Looking forward to some more good news!!
  • Max Power
    Max Power Member Posts: 60
    #16
    Phoenix Rising said:

    Oncologist visit 10/08/12
    Hey Kids,
    I went to the onc Monday and he likes the way things are going so far. The lab was slow getting my blood results back, so my appointment was over before the results came back.

    I reported a laundry list of side effects on this visit. I have:

    *Splinter hemorrhages-- he said that is to be expected
    *Hypopigmentation/light spots on my face-- expected action of the med
    *My dark brown hair has a few shiny copper strands around the temples-- he said no big deal
    *Very short hairs on my arms are white-- (just noticed today)
    *Elevated blood pressure-- he said this shows the med is doing something in my system, and the intended action of the votrient is to interfere with vascularity-- so HBP is to be expected. He increased my BP meds to 2 tabs a day since 1 tab was keeping me stable but not lowereing BP.
    *Leg cramps-- I drink gatorade and haven't had trouble with them when I drink it.
    *Diarrhea-- he said take Immodium but I am hard-headed and haven't purchased any yet.
    *Tire easily walking distances or up stairs-- he said it happens
    *Hot flushes-- I thought I was having hot FLASHES until I read yesterday that hot FLUSHES were a side effect. After I read up on hot flushes I realized I was flushing and not flashing.... so I didn't mention that one to him.
    *Muscle weakness- forgot to mention
    *Achy joints

    So the onc said he is going to keep me on 2 tabs (400 mg), since increasing my dosage will only increase the side effects. He said the side effects I have now are enough to say the medicine is in my system in ample amounts for my body. My next scan will be in November andhe said we'll decide where to go from there.

    I told him although I have a list of side effects, none of them are severe enough to make me want to stop. It's really a walk in the park compared to what I have seen others go through.

    immodium
    I like the immodium, it's very stubtle (it doesn't operate like lomotil) one caplet is all I need for the day. You don't want to be dehydrated.
  • Phoenix Rising
    Phoenix Rising Member Posts: 170
    #17
    angec said:

    Phoenix, glad you are
    Phoenix, glad you are managing well! I read that someone took vitamin b and the body aches and muscle cramps/pains went away. Maybe you can ask the doctor if you can take it. Wishing you the best on your next scans!

    Vitamin B sounds good to me!
    Thanks Angec-- I am going to ask about the vitamin B!
  • Phoenix Rising
    Phoenix Rising Member Posts: 170
    #18
    Max Power said:

    immodium
    I like the immodium, it's very stubtle (it doesn't operate like lomotil) one caplet is all I need for the day. You don't want to be dehydrated.

    I broke down and got the Immodium
    I really didn't want the Immodium because the liquid made me sick to my stomach years ago. Didn't know they had tablets until I went to the store looking for it yesterday. Got the tabs, took two, and like magic "the Dea Rea's" (as my aunt used to say jokingly) was gone. I slept comfortably through the night.
  • Phoenix Rising
    Phoenix Rising Member Posts: 170
    #19
    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.
  • angec
    angec Member Posts: 924 Member
    #20
    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.

    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!
  • Texas_wedge
    Texas_wedge Member Posts: 2,798
    #21
    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.

    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?

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