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

Phoenix Rising's picture
Phoenix Rising
Posts: 154
Joined: Jul 2012

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

Phoenix Rising's picture
Phoenix Rising
Posts: 154
Joined: Jul 2012

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's picture
Max Power
Posts: 60
Joined: Sep 2012

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's picture
Max Power
Posts: 60
Joined: Sep 2012

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's picture
Max Power
Posts: 60
Joined: Sep 2012

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's picture
Phoenix Rising
Posts: 154
Joined: Jul 2012

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
Posts: 5
Joined: Aug 2012

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.

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Phoenix Rising
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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's picture
Max Power
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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's picture
Phoenix Rising
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Joined: Jul 2012

.... 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.

aazbell
Posts: 8
Joined: Feb 2013

I went through 4 rounds of Sutent until it quit working and now I've went through a month of Votrient.  My hair turned silver with the Sutent and the two weeks that I was off turned darker then my original color.  I was off the meds for six weeks and then it went darker again.  I have heard that it will turn white with the Voltrient.  So now I can have poka-dot and strips.  I lost a lot of hair with the Sutent.  So far not so much with the Votrient.  I have papillary renal cell.  Is anyone having any luck with treatments?  I've been on Avastin also.

 

Phoenix Rising's picture
Phoenix Rising
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Hi Aazbell-
I have the papillary type, as well, and so far the Votrient is the only thing that has worked for me-- and by "works," I mean it is keeping me stable.

Phoenix Rising's picture
Phoenix Rising
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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's picture
angec
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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's picture
Texas_wedge
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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's picture
angec
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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's picture
angec
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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!!

Phoenix Rising's picture
Phoenix Rising
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Thanks Angec-- I am going to ask about the vitamin B!

Max Power's picture
Max Power
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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's picture
Phoenix Rising
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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's picture
Phoenix Rising
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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's picture
angec
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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!

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Phoenix Rising
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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.

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angec
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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!!

Texas_wedge's picture
Texas_wedge
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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?

Moraboy
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Joined: Oct 2012

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.

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angec
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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!

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Phoenix Rising
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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!

Moraboy
Posts: 7
Joined: Oct 2012

Today I got my scan results after 2 months of being on Votrient. It was a mixed review. First the good news, my kidney tumor has shrunk by almost 40%. Of course when you give good news there is always bad news to follow, my lung mets have grown by 50% and 80% not so good. So the doctor is going to change my meds to Afinator, in hoping to slow down the lung mets. She is also thinking of moving up the surgery to remove my kidney. The mets in my liver were just slightly larger then before. We just have to wait and see what the doctors at MDA think.
My mood and spirits are good, I am just dealing with what comes my way.

Happy Thanksgiving everyone.

Texas_wedge's picture
Texas_wedge
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I guess that with your particular platter of mets, Steve, it was improbable that it would be all good news. That said, it's got to be a major triumph that that huge kidney tumour has shrunk so much (is the percentage in linear measure? If so, then in volumetric terms it's now only a fifth of the size it was!) It's great that the plan is working and you'll be able to have a nephrectomy rather sooner. That large reduction in total tumour burden will improve the capacity of your immune system to fight the mets and at 50ish you have (comparatively) youth on your side.

I appreciate that there are questions of insurance/costs and also toxicity but a thought occurs to me. We know that a judicious use of a combo of drugs often produces a response much greater than the sum of the parts. The doc is thinking of switching you to everolimus and dropping the Votrient that has done a great job on your primary tumour. Might there not be a case for considering continuing the Votrient (perhaps at a reduced dose) and adding the Afinitor? The Votrient side-effects are relatively gentle, anyway. I have no idea about possible interactions between Votrient and Afinitor but one is a VEGF drug and the other an mTOR inhibitor and we know that RCC seems vulnerable to the old one-two punch combo.

Unless you think this is a stupid suggestion, maybe you could put it to your doc (and let us know the answer she gives)? It's good that your liver isn't so bad. How about the lymph nodes?

Are you continuing to teach? Anyway, it's great to hear that your mood and spirits continue to stand you in good stead. I hope it's onward and upward from here.

angec's picture
angec
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TW that sounds like a good approach. I wonder what the doctor will say about it. 40 percent shrinkage is very desirable in only two months. Makes me wonder if they keep going maybe she can keep her kidney. I always wondered why they didn't try to shrink the tumor in the kidneys and try to save them.

How is your pressure TW? Do you feel any better pain wise??

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Texas_wedge
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Ange, it's actually best, with a primary tumour, to cut it out completely, if that's possible. If it isn't (Steve's was huge at 15cm x 15cm and awkwardly placed) then neo-adjuvant therapy to shrink it, with a view to making it operable, is desirable. At worst, shrinkage will lessen pain.

My BP is well up and I've just been given a presciption for a mild anti-hypertensive which will enable me to go on with intensive exercise without anxiety. I reckon the Votrient is working because my pain level has gone down a little.

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angec
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TW I would say if the pain is less then that means shrinkage. I am wondering how they will tell how much it shrinks since you have not had a scan in a while now. But they may be able to tell. Just happy that the pain is less. The by should be manageable. It has only been two weeks and to feel a difference already is hopeful.

I was again looking at that interview with the doctors from MSK where the doctor says it is a gene mutation where the blood vessels just keep creating themselves and the tumors grow quickly. Which is why chemo doesn't really kill the tumors because they are pushed by the excessive blood flow.

I am trying to get mom in to see Dr. motzer. Also her onc said she is most probably clear cell but I hope to get a second opinion.

Prayers for all!

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Texas_wedge
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That's right, Ange - my oncologisr confirmed yesterday that there's been a gap from last scan to start of drug treatment such that we don't know exactly where we started from, considering the tumour was growing very rapidly. My next scan will be after 2 cycles on Votrient, so not until early January. I agree that if the pain keeps lessening it would seem like a promising sign.

I do hope you can get Mom to see Dr. Motzer soon and getting a second opinion is invariably a good idea, even if it leads to more head scratching. Please give her my best wishes.

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angec
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TW, how long is a cycle? Is it one month? Is the medicine working for the blood pressure? Does it interfere with the main idea behind the Votrient? I did read somewhere where they can tell just how big something was before it shrunk. I am wondering if scan man knows the answer to that. Something about the tissue area left behind. I am so glad that the pain is less and less. You must be noticiing that you are waiting longer in between to take the pain meds,

I am in the process of sending papers from mom's current doctor to Sloans. They should have the, hopefully by Monday and then set then appt. from there. Not sure if we will get Motzer though as the woman said maybe an associate. I will push for it though and my brother is friends with someone who's brother works there also on melanoma. So I hope at least I can name drop and see if it helps. Buying any case Sloans is the best place to go no matter who we see.

Much love to you TW, please keep posted. So far no other symptoms right? Xxoo

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Texas_wedge
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Yes, a 1 month cycle on Votrient, unlike the 4 weeks on, 2 off, or 2 weeks on 1 off, used with Sutent. I've just taken my first mini-dose of 5mg of the BP med so it's a little early to comment on its efficacy! I believe the BP meds don't weaken the effect of the Votrient. The cancer pain continues to lessen and I am, indeed, taking the painkillers at longer intervals.

I hope you manage to get Motzer for your Mom but anyone there is likely to be good and you never know, you might get the next Motzer, or an up and coming replica of Jan Dutcher. Yes, we'll surely stay in touch and I can confirm no side-effects so far but maybe it's still early days for some of them to appear.

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angec
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TW, mom will see Dr. motzer at Sloans on Thursday morning. Providing we don't get snowed out. I will let you I know how it goes. Hope you are doing well.

Texas_wedge's picture
Texas_wedge
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Excellent news Ange - your persistence is really getting you somewhere and I look forward to hearing how it goes.

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garym
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T,

I've been wanting to ask how you have been feeling since starting on Votrient, but didn't want to intrude so its good to learn you are showing signs of improvement. From what I've seen on other posts, pain levels seem to be a good indicator of drug effectiveness, I'm sure it means the same for you.

Rock on,

Gary

Texas_wedge's picture
Texas_wedge
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Don't bet on it Gary - it's different when you're upside down!

Moraboy
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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.

Phoenix Rising's picture
Phoenix Rising
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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.

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Texas_wedge
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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.

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Phoenix Rising
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Tex,
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.

one putt
Posts: 72
Joined: Sep 2012

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.

Texas_wedge's picture
Texas_wedge
Posts: 2807
Joined: Nov 2011

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.

Phoenix Rising's picture
Phoenix Rising
Posts: 154
Joined: Jul 2012

TW, If your hair turns red, rock on! And get some meds for the BP!

angec's picture
angec
Posts: 622
Joined: Mar 2012

Hi John, just seeing this post now.. sorry this reply is so late.  Hope you and Alice are doing well.  How are the leg cramps? I have heard it can also be from some of the bp meds like Metroporal.  One thing I wanted to mention. The GP just told mom that gatorade is hard on the kidney function and should only be used if dehydrated.  Mom was severaly dehydrated and her creatinine is 2.42 so we used gatorade beause we thoguht she said to do so. On the visit on Friday she said no gatorade as it has alot of salt and sugar and not good for kidneys. Incidently, if they give intervenous in the hospital it usally also contains alot of salt and sugar.  So it leaves us to wonder which is the lesser evil.  Just thought i would pass it on since i had recommended the gatorade on another gps advice. Love to Alice and big hugs!

NanoSecond's picture
NanoSecond
Posts: 531
Joined: Oct 2012

Hi Angec,

Please take the time, when you can, to review this video lecture given by Dr. Robert Lustig called, "Sugar - The Bitter Truth":

http://www.youtube.com/watch?NR=1&feature=endscreen&v=dBnniua6-oM

In it you will discover that Gatorade not only contains lots of sugar - but the kind of sugar it contains is High Fructose Corn Syrup (HFCS).  Fructose, unlike glucose, can only be metabolized by the liver.  In Dr. Lustig's (and so many others) view excess sugar should be considered a "chronic" (not acute) poison.  That is, unlike an acute poison such as arsenic, this one acts slowly over time.  Gary Taubes, wrote extensively about this in an article titled, "Is Sugar Toxic?" in the New York Times Magazine back in April 2011:

http://www.nytimes.com/2011/04/17/magazine/mag-17Sugar-t.html?pagewanted=all&_r=0

Many sweetened drinks contain high levels of sodium (salt).  Then sugar (usually fructose) is added to it to mask the salty taste.  The result? You drink more of the beverage and yet still remain thirsty.  It is insidious.

The original Gatorade, developed by the University of Florida, used to taste just awful.  When Pepsi bought the rights to market and manufacture it they changed the formula to include tons of fructose to mask that awful taste...

Gatorade should only be consumed by atheletes.  The ONLY beverage that can safely relieve hydration is called water.

 

 

 

angec's picture
angec
Posts: 622
Joined: Mar 2012

Thank you Nano Second, i will indeed watch the video.  I am in the same line of thought. Water is the safetest method to relieve dehydration.  The doctor yesterday said it can be used as an emergency for a very short time.  I don't like the stuff either. I will only drink water, green teas and coffee myself.  Thank you for the information. I am sure others will find it useful as well. With so many different opinions from doctors, sometimes it feels as you are darned if you don't and darned if you do!  Be well!

NanoSecond's picture
NanoSecond
Posts: 531
Joined: Oct 2012

Hi Angec,

Very pleased you are going to check out the video.

Do read Gary Taubes piece as well.  It will take less time (the video is 90 minutes long), but, more importantly, at the end he spells out the connection to cancer.  Here is a portion of it (and show it to those doctors in the hospital):

"Now most researchers will agree that the link between Western diet or lifestyle and cancer manifests itself through this association with obesity, diabetes and metabolic syndrome — i.e., insulin resistance. This was the conclusion, for instance, of a 2007 report published by the World Cancer Research Fund and the American Institute for Cancer Research — “Food, Nutrition, Physical Activity and the Prevention of Cancer.”

So how does it work? Cancer researchers now consider that the problem with insulin resistance is that it leads us to secrete more insulin, and insulin (as well as a related hormone known as insulin-like growth factor) actually promotes tumor growth.

As it was explained to me by Craig Thompson, who has done much of this research and is now president of Memorial Sloan-Kettering Cancer Center in New York, the cells of many human cancers come to depend on insulin to provide the fuel (blood sugar) and materials they need to grow and multiply. Insulin and insulin-like growth factor (and related growth factors) also provide the signal, in effect, to do it. The more insulin, the better they do. Some cancers develop mutations that serve the purpose of increasing the influence of insulin on the cell; others take advantage of the elevated insulin levels that are common to metabolic syndrome, obesity and type 2 diabetes. Some do both. Thompson believes that many pre-cancerous cells would never acquire the mutations that turn them into malignant tumors if they weren’t being driven by insulin to take up more and more blood sugar and metabolize it.

What these researchers call elevated insulin (or insulin-like growth factor) signaling appears to be a necessary step in many human cancers, particularly cancers like breast and colon cancer. Lewis Cantley, director of the Cancer Center at Beth Israel Deaconess Medical Center at Harvard Medical School, says that up to 80 percent of all human cancers are driven by either mutations or environmental factors that work to enhance or mimic the effect of insulin on the incipient tumor cells. Cantley is now the leader of one of five scientific “dream teams,” financed by a national coalition called Stand Up to Cancer, to study, in the case of Cantley’s team, precisely this link between a specific insulin-signaling gene (known technically as PI3K) and tumor development in breast and other cancers common to women...

“I have eliminated refined sugar from my diet and eat as little as I possibly can,” Thompson told me, “because I believe ultimately it’s something I can do to decrease my risk of cancer.” Cantley put it this way: “Sugar scares me.”

 

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