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A Concise Guide for Sutent User Newbies (new users)

Eliezer2
Posts: 58
Joined: Aug 2012

A Concise Guide for Sutent User Newbies (new users)

 

 

*  Sutent does not "work" for everyone, but it does work for a LOT of people.  No one knows for how long it can work because it has only been on the market for a few years.

 

*  I have stage 4 RCC with a lot of small mets in my lungs.  I am one of the people for whom Sutent works and I recommend it!  I am not getting any kickbacks for saying so from the manufacturer (alas).  I have been on it for about 19 months.

 

*  At this point the disease itself is not directly causing me any disruption, discomfort, or pain.  Any discomfort I have is not directly from the disease but from the side effects of the Sutent.  The price for halting the progression of the disease is those side effects.  These vary a lot across patients and even for individual patients across Sutent cycles.  The side effects are not trivial, but generally not so bad as to prevent normal functioning and quality of life (at least by my experience).  Coping with cancer at this point is simply coping with those side effects, but nothing worse than that.

 

*  The side effects of Sutent vary from the mild to the very annoying.  They also vary from the medically irrelevant to the medically potentially dangerous.

 

Side Effects:

 

*  I find that they are milder on a two-week-on-one-week-off cycle than the 4-2 week version.  I am on the full monty, the 50 mg dose, which some people cannot tolerate.  I think you are better off on 50 mg with shorter cycles than 37.5 with longer cycles.

 

*  I think the two common and most dangerous potentially for most people are high blood pressure and slow thyroid functions.  There are some people who experience disruption of liver functions or heart functions; one needs to keep an eye on those things.   Blood pressure and slow thyroid issues are relatively easy to treat and control but are dangerous if not controlled.  Simple blood pressure meds work for me and I go off them when I am on the breaks in the Sutent cycle.  Slow thyroid gets fixed with a thyroid supplement that has no other side effects.  My thryoid has gotten slower and slower and I have had to adjust the thyroid supplement accordingly, but nothing worse than that.  Slow thyroid and high blood pressure are actually a mixed BLESSING, because they are highly correlated with the Sutent being EFFECTIVE!

 

*  Mildly annoying side effects:

 

    -  MANY people get mouth, hand, feet sores.  I have gotten none, but I think my experience is not typical.  I understand these are manageable.

 

   -  Taste changes in mouth late in cycle - spicy foods, salty, alcohol, mouth wash are very irritating when this happens.   Taste changes are milder on a 2-1 cycle compared with 4-2.

 

   -  General muscle weakness in arms and legs late in the cycle, disappears during Sutent break.  These are also milder on 2-1 cycle compared with 4-2.  Just take stairs slower and carry fewer groceries.

 

     -  I get watery eyes late in cycle.  Nothing to do about it.

 

     -  My body temp drops quite low and I feel cold a lot.  Drops to 35 degrees C (94.8 F).  Might be thyroid related, or not.  Nothing to do but turn up the thermostat and add layers.

 

    - General feelings of tiredness and fatigue.  Fixed by taking naps. 

 

    - Hemoglobin can drop.  Fix by taking iron supplement.  Blood fats (cholesterol and triglycerides) can shoot up, partly because of thyroid.  Adjust diet and, if necessary, take a pill that knocks them back down.

 

  -  Hair turning white and skin pale.  I do not care much about this (on male geezers it is supposed tolook distinguished) but women patients complain a lot about it.  Can cure it with hair color.   My skin is a little dry, including in some unmentionable spots, but nothing some skin cream or Vaseline cannot fix.

 

*  Very annoying side effects:

 

   - For me, the only really serious annoyance has been gastro side effects:  the "runs," painful gas, cramps, sometimes nausea.  I have been wrestling with finding ways to control this for over a year and a half.  Most people seem to control it more easily than me, but what they use has not helped me.  This past month I have tried a couple of new things and at long last they seem to be working.  For me, this has been the major factor negatively impacting quality of life, but really the only such factor.

 

 

*   Emotional side:  This of course also varies widely across people.  I was pretty scared and stressed in the first few weeks after I discovered I had mets in lungs and was Stage 4, rather than Stage 1.  After that, I made my peace with it and I would say that at this point I am not affected emotionally at all, am as chipper and optimistic as healthy people my age (I am 62).  I live a normal life, work, do pretty much all the things that healthy guys my age do, minus the jogging and weight lifting.  When I was first diagnosed, I was sent by the oncologists to a social worker for counseling.  She invited me into her office with boxes of tissues, since so many people sit and cry there under the circumstances.  I ended up telling her jokes and picking up HER spirits.  I am not depressed, I am no moodier than before I got cancer.  I do not feel dread on a day-to-day basis.  My most distressing experiences are all gastro side effects.   I am somewhat religiously observant but I do NOT think my emotional state has anything to do with that.

 

*  I have LOTS of small mets in my lungs.  I can also do 30 pushups at age 62 (how many healthy blokes my age can say that?) and my pulmonary functioning levels are those of a health 45 year old (how many healthy blokes my age can say that?).  I do get out of breath more easily, but I attribute that to cutting back on exercise when I turned Stage 4.

 

* I do still get a bit nervous when waiting for results from CT's and similar, and I have put my financial affairs in order, just in case.  But at age 62, EVERYONE should do THAT.  Once put in order, I ignore the subject altogether and get on with enjoying life. 

 

*  Do things you like to do and that give you pleasure.  There is life after RCC!

 

 

 

garym's picture
garym
Posts: 1651
Joined: Nov 2009

Great info not just on Sutent, but (perhaps more importantly) on coping mentally and physically with the fight.  You have a positive attitude and wonderful spirit and I'm sure this will be of benefit to many others.  Thank you for sharing it!

lizbthmagallon
Posts: 30
Joined: Aug 2012

My mom used Sutent for about 2 months. It did not work unfortunately for her. Good to hear it it working for you Eliezer2. Right now she is on Torisel* hope this one does it for her. She was diagnosed with RCC 4 back in Deceber 2011 meds to Lungs, brain, pelvic area and spine.

banddinbc's picture
banddinbc
Posts: 13
Joined: Jan 2013

Thank-you for your post, My husband "Don" is recovering from a radical nephrectomy and is about to start on sutent.  He is having a CT on Jan 30, and blood work to give a comparison of the ones done in Nov, when he had surgery to repair his right arm fracture caused by a metastistic tumour,with radiation on said arm, which is how we learnt he has cancer. 

,  We know sutent is the plan just not the regime as yet,, as our oncologist will plan accordingly after seeing the ct results and knowing the kidney lab test results

your information is very helpful for a newbie like us best wishes :Bev.

 

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

Aside from the benefits of reciprocal support and the keeping up of our spirits, this sort of post is why these forums have so much value.  You don't generally get this sort of practical help anywhere else, except, perhaps, if you're lucky, from specialist cancer nurses.

I think you know that we share very much the same philosophy, Steven, so my glosses below are to be read in the context of my endorsement of your whole approach to this malady and its management.

"No one knows for how long it can work because it has only been on the market for a few years."

That's right, but it was FDA approved around 7 years ago and there were people on trials for some time before that. I'd have to dig a bit for instances but I know there are people, probably a fair number by now, who've been on Sutent for quite a few years.

"Any discomfort I have is not directly from the disease but from the side effects of the Sutent.  The price for halting the progression of the disease is those side effects.  These vary a lot across patients and even for individual patients across Sutent cycles.  The side effects are not trivial, but generally not so bad as to prevent normal functioning and quality of life (at least by my experience)."

It's quite common for people to find the treatment worse than the disease (until it progresses to a really bad stage). In fact, a fair proportion of patients who are actually responding to Sutent are taken off it because they find the AEs (adverse events) unendurable.  The ideal posology is not well-established yet and will vary a lot from person to person - definitely not a 'one size fits all' scenario.  Some who are doing really well and not suffering bad side-effects, can take a change from the normal  4 weeks on, 2 off  to 4 on, 1 off,  for stronger therapeutic outcome.  Conversely, some who would otherwise have to come off it are enabled to stay on by switching to the less punishing 2 weeks on, 1 off  regimen in which the AEs don't have enough time to get bad before there's a rest break, and thereby they remain manageable.  Another dose alteration is titration by splitting the full dose of 50mg into 4 parts, distributed through the day, rather than as one big dose and this has enabled some to be OK on 50mg and not need to reduce to, often, 37.5 mg daily.  I'm sure you're right in saying it's preferable to be on 50 mg. for the shorter cycle than 37.5 for the longer one.  I wouldn't be surprised to see the shorter cycle being prescribed much more often in future.

"Slow thyroid and high blood pressure are actually a mixed BLESSING, because they are highly correlated with the Sutent being EFFECTIVE!"

It does seem as though the potentially most dangerous of the side-effects are also the best markers of positive response to the TKI drugs.  Liver function getting out of kilter appears to be the most common problem that is not so easily managed.

"MANY people get mouth, hand, feet sores."
This is one factor that takes some people off Sutent but others get by OK by using creams with a high urea content and a few other dodges.

"Taste changes in mouth"

Typically this manifests as a 'metallic' taste and, for whatever reason, some people find this is attenuated by using plastic cutlery instead of metal cutlery.

"General muscle weakness in arms and legs"

This is annoying. It can be difficult to know what to ascribe such an effect to, if one is on additional meds. I'm on a calcium channel blocker muscle relaxant and wonder whether a slight loss of performance may be due primarily to that but maybe it doesn't affect the peripheral musculature/

"    My body temp drops quite low and I feel cold a lot.  Drops to 35 degrees C (94.8 F).  Might be thyroid related, or not.  Nothing to do but turn up the thermostat and add layers.

    General feelings of tiredness and fatigue.  Fixed by taking naps."

I get onto a hobby horse at this point.  I think there's a better strategy on these matters. You're in fine physical shape Steven so I think you'd take it on no bother.  It's been well established that exercise is good for cancer patients before surgery, in recovery from surgery (of course not too much too soon - a bad mistake to push onesself before ready for it) and forever after.  Most RCC patients are in the older age group and the importance of, in particular, strengthening exercises, becomes increasingly important as we get older.

There are various aspects of tiredness. I find myself sleepier than previously - all too easily nodding off in front of TV or PC, but this is very different from fatigue.  When pleasantly sleepy, if there's nothing pressing to do a little nap may well be just the ticket and I find I can do that now, while I couldn't in the past. 

However, a couple of days ago I felt more in the way of fatigue - not physically tired as such, but weary, listless and incapable of getting on with anything.  I felt I just wanted to crawl into bed and give up trying to get anything (physical or mental) done. However, I knew that if I did I would gain nothing - I would almost certainly wake up feeling disorientated and physically sick. I would also feel I'd let more time go by with nothing to show for it.  I managed to drag myself to my rowing machine and knocked out 10,000 m of decent work - no sense of tiredness as soon as it was underway.  Followed by a luxurious soak in a hot bath, I then felt like a million dollars and was able to happily spend the rest of the day reading and writing for many hours - something I would not have been able to do if I'd chosen the other path. 

We all differ but, like you, I've kept in good shape all my life so hard workouts are no bother.  However, while the level of exercise will be very variable, as between different people, the principle of doing a bit of exercise, all the time, is crucial.  It doesn't need to be heroic but should involve a bit of effort, depending on one's health and condition, and even a modest level will be hugely better than simply taking it easy all the time.  The benefits for mood, self-esteem, easier coping with the physical tasks of the day and, ultimately independent living for as long as possible repay the effort immeasurably.

"For me, the only really serious annoyance has been gastro side effects:  the "runs," painful gas, cramps, sometimes nausea.  I have been wrestling with finding ways to control this for over a year and a half"

Aside from HFS, these effects seem to be the biggest downside for a lot of folks. This is why it's so heartening to read about the experiences of one of our other significant contributors here. You've mentioned changes you've made to manage the side-effects including diet and you'll hear Nano second that on the basis of his pied piper pilot experiment.

 

NanoSecond's picture
NanoSecond
Posts: 519
Joined: Oct 2012

Just to follow up on Tex's reference to my "pied piper experiment"...

I have been taking the recommended maximum dosage of Sutent (50mg/day) since last August. [Since I have bone mets to my sacrum and left femur I also get a monthly shot of Xgeva - Denosumab].  I am about to start on cycle #5 for me (one cycle = 4wks on followed by 1 wk off).

I have posted elsewhere that in all this time I have had no significant side effects from taking Sutent.  I believe there is a major reason for this.  It has to do with the diet and certain supplements that I take.

What I am doing is primarily based on following the recommendations outlined in the book, "Life Over Cancer" by Dr. Keith I. Block. But my research extends far beyond that as well.

I have prepared a 37-page .pdf document that explains in detail the science and rationale behind both my diet and the supplements I take.  It also lists other resources you can explore to get a better understanding of proper diet, nutrition, and cell metabolism - regardless of whether or not you intend to follow what I am doing.

If you email me at: n.feldman@videopost.com I will be glad to email you (or anyone reading this) a copy.

 

-NanoSecond

mountcarmel
Posts: 5
Joined: Mar 2013

Thanks for your helpful advice about sutent.  My husband is 58 yrs old and had a partial removal of his left kidney in July.  After his 6 month scan they found spot on his rib and adrenal gland looks larger.  He has just started in a clinical study and is on sutent.  He also experienced the high blood pressure but now under control.  First, side effect has been gas both ends and heart burn.  Oncology nurse told me to try Gas-X and we are also using Ginger products, but too soon to tell if they will work. Please keep us posted on anything you find to help with the gas. 

TerriNick
Posts: 43
Joined: Mar 2013

We have found that Vitamin B Strong Compiound tablets - 1 tab three times a day seems to keep the sore mouth and mouth sores at bay.

Hope this helps

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