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Additional treatment options

BLKJAK
Posts: 108
Joined: Apr 2013

Good morning folks!

As many of you know, Votrient is most likely not working for me. I had 1mm of general shrinkage at my 3 month CT scan, but then a 1mm growth at the 5 month CT scan. My local oncologist suggests switching to another drug. We meet with the oncology team at UW-Madison on Monday morning for their take on things. I've been reading that 1mm is so small and it's possible that the measurements weren't accurate on the first or second scan. We've also heard that the lymph nodes can swell by 1mm easily when the body is actually fighting the tumors. We'll have to get the oncology team's thoughts on this.

Because of the disappointing scan results my awesome wife has been reaching out to friends with cancer and researching supplements / alternate treatments that they are taking.  So far here's what has been suggested:

Tagamet (Cimetidine) - over the counter stomach acid inhibitor (http://cancerx.wordpress.com/2008/11/09/off-label-cimetidine-as-a-cancer-treatment/)

Mistletoe Extract - I'm not sold on this one. There are some potential bad side effects or reactions from this one such as actually promoting cancer cell growth. There aren't enough credible studies to determine if mistletoe extract is effective toward RCC or not.

Probiotics - the general idea is to boost your immune system and help your body to fight off the cancer. Is it just a product which is getting it's 15 minutes of fame, or does it actually help us long term?

I'm eager to get your thoughts on these items. Thank-you for your time.

BLKJAK 

NanoSecond's picture
NanoSecond
Posts: 603
Joined: Oct 2012

Hi BLKJAK.

Here's a more detailed examination of how Tagamet (Cimetidine) may work as an anti-cancer agent.  However, keep in mind it is a mixed bag as far as RCC is concerned.  Most studies relate to colon cancer, not RCC:

http://www.lef.org/magazine/mag2002/jul2002_cover_cimetidine_01.htm

The most important issue to consider is that fact that Cimetidine inhibits CYP3A4.  Anything that decrease or inhibits the activity of this enzyme (such as grapefruit and grapefruit products and certain varieties of oranges) will increase the concentration of most drugs, including all TKI's, in the bloodstream.  The result could become dangerous.  This is definitely a supplement that should be taken only in consultation with, and under, a doctors care.

The jury is still out on Mistletoe Extract:

http://www.riversideonline.com/health_reference/Cancer/AN01247.cfm

Again, take only under doctors supervision, if at all.

Finally about Probiotics.  It's a great idea as far as establishing and maintaining a large and healthy population of "good" bacteria in your microbiome (i.e. gut).  Certainly it is a must-do if you are suffering from diarrhea or other severe gastrointestinal distress.  However, the effect on the immune system will only be secondary.  That is, it is still largely unknown how the microbiome effects our immune system for good or ill.

If you take any Probiotics you need to also take some "Prebiotics".  That is, you also need to ingest ample fiber to feed those bacteria in your gut.  They feed on cellulose (but we don't).

Just my 2 cents,

 

-N

GSRon's picture
GSRon
Posts: 1306
Joined: Jan 2013

Hi Blkjak... based on your comments, I am not so sure that the Votrient is not working..  It sounds like you may have stability, which is good..!  If the drug's side effects are not an issue, then perhaps another 3 months of treatment will tell for sure..

Good Luck..!

Ron

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

I agree with Ron. 

Votrient is an excellent drug in my book and has done a lot for me.  Both Ron and I were pleased with it and would have continued on it were it not for the liver enzyme issues that drove us both out of doing so.

BLKJAK
Posts: 108
Joined: Apr 2013

I personally think that 1mm is a very hard measurement to ensure 100% accuracy, especially when you are measuring something that isn't a rigid and solid object. We will definitely be speaking to the Oncology Team at UW-Madison on Monday to get their opinion. I really want Votrient to work for me. Crossing out one of drugs could mean a shorter life expectency for me. It's certainly not a decision I will make without a second opinion. I also have to remember that the local oncologist is the one that basically wrote me off from the start. He's still in the picture to administer the drugs and to schedule CT scans locally to save us a 2 hour trip.

danbren2's picture
danbren2
Posts: 202
Joined: May 2013

BlkJak,

     Make that 2 hour trip.  I was in the same boat (well kinda) had my kidney removed in August 2011 and was back in March 2013 to have partial right lung removed because of cancer spreading.  Right now I am Nedding, thank God! I do have a scan coming up on October 11 and praying I will continue the nedding.  I am now traveling 2 1/2 hours to see my Oncolgist and have chosen not to see the local oncologist.  When I had my kidney removed, it was a year later before any more scans were requested to be done.  The Oncologist that I am seeing now felt that I should have been seen in three months for follow-up.  I am not saying the local oncologist was wrong, everything was pointing to me being completely cleared, but that did not happen.  So I have chosen to make the 2 hour trip every three to four months to have my scans done.

     Whatever I can do to help ease stress while dealing with this awful "C" word, I am doing.  The stress has been awful for me, and learning to deal with the anxiety that comes along with this has been so bad for me.  This sight has been a Godsend to me, with FoxHd and Ron and some others to help me deal has been amazing.  I have not had to have any treatments, but in what I have read and learned here, it would seem to me that your Doctors would give the Votrient a little more time to do there job.  I hope and pray that whatever meds they decide for you that they start working and you live to be a very old happy person!

                                                                Love and prayers of good health sent to you!

                                                                 Brenda

BLKJAK
Posts: 108
Joined: Apr 2013

Don't worry, we are making the trip on Monday to get a second opinion. Our local hospitals are generally excellent. The local oncologist has stated that he is no expert on RCC. They really don't have anyone local (at least covered by our insurance) that is considered an expert, so we were referred to the University of Madison. We use the local facilities to do blood work and CT scans. This information is then pushed to the "Oncology Team" at UW-M and they go over the results if warranted.

I hope you are right. I would love to be a very old, happy person! I need to be old enough to go to my son's homes and leave randon lights on, faucets opened a crack, leave cupboard doors open, move things around and leave them in odd places....the list goes on and on. LOL!

Thanks for the love and prayers. Mrs_blkjak and I return the favor!

 

BLKJAK

angec's picture
angec
Posts: 664
Joined: Mar 2012

My gut is telling me the same thing that TW, Dan and Ron has said.  It sounds like stability to me too.  I was told by one doctor that 1 mm either way is not indicative of growth or shrinkage because there can always be errors in sizing.  I hope the second opinion brings some comforting news!  In any case, there are many other options.  It is kind of strange it is only the nodes growing and not the other spots.  Maybe it is due to reaction?  Praying for the best! Don't get discouraged, it will all be worked out!  XXOO

 

Oh, and if you want to know about Mistletoe, Suzanne Somers seems to be the expert on it! She has written about it in many of her "knock Out Cancer" books! ;)

BLKJAK
Posts: 108
Joined: Apr 2013

Here's one thing that differs from the first scan compared to the second scan. During the first three months I had done the Gerald White Guided Imagery program religiously each night. The next two months I got lazy and hardly used it at all. It would be interesting to get another two months of Votrient use and use the Guided Imagery program again. While not scientific, it would be interesting to see if there was shrinkage again when using the program.

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

Like Neil, I'd favour probiotic but forget the other two items.

BLKJAK
Posts: 108
Joined: Apr 2013

I am going to inquire about the probiotics during Monday's appointment. I also want to ask about Tagamet and see what they have to say. Of course I or Mrs_BLKAJK will post the details of the discussion.

Why is 800mg the largest dose of Votrient that is prescribed? It more too toxic to the body or is it that it's not any more effective in larger doses?

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

Ron and myself can speak with some passion on this topic, both having had to abandon the benefits we were having from Votrient when our liver enzymes went haywire!!!  The drug didn't fail - perhaps it was working too powerfully and we would have had a much longer run on it if we'd reconciled ourselves to a slower pace and had a lower dosage regimen.

My Wife asked me a couple of days ago about the somewhat exiguous sources of dosage advice so I've just been investigating them.  The most comprehensive is GSK's own Summary of Product Characteristics and all that's said is that 800/day is the usual starting dose and also the max dose!   Ron and myself (and others) stand as evidence that there is too high a dose but I believe the reason that 800 is regarded as the optimal dose is that it's a level generally well tolerated AND there's a steep decline - in diminishing therapeutic returns - above that level.

  

mrs_blkjak's picture
mrs_blkjak
Posts: 92
Joined: Apr 2013

It was the lymph nodes that showed growth. Many of them. The kidney tumor and other mets apoear stable, but the lymph nodes are all growing. They were already "grossly enlarged" at the time of diagnosis (So much so that they initially thought he had lymphoma). The oncologist here locally thinks its time to change meds, but we are going to see the experts in Madison on Monday (we due routine stuff locally, but let the RCC experts at UW make all decision). I had read that occasionally lymph nodes will swell when cancer cells are dying. I don't know if that's what is occurring or not. Its probably pretty hard to tell for sure. In any case, it wasn't the positive ct scan that we had hoped for. We wanted more shrinkage! But we will see and let you all know what happens on Monday.

mrs_blkjak's picture
mrs_blkjak
Posts: 92
Joined: Apr 2013

My husband was kind enough to point out how sloppy my last post was Tongue Out Apparently I was out of my element....usually I'm kind of a grammar freak! Sorry!

BLKJAK
Posts: 108
Joined: Apr 2013

It's not often that I catch you making spelling or grammar mistakes. It's even more rare to have both in one place! Love you honey! :)

alice124's picture
alice124
Posts: 881
Joined: Mar 2012

While a second opinion/read is never a  bad idea, let me share one pont John's doctor has made relative to scans. His first response to a 1 mm  increase/decrease on a scan is to initially ignore it. Rule of thumb for him is to attribute it to "noise."  This "noise"  he attributes to movement. John has had a couple of instances over the past year+ where a 1 mm increase/decrease  is noted and--so far--the increase or decrease has only been mentioned a single time and then dismissed the next time around giving credence to his doctor's lack of concern.  

 Hope this holds true for you and "stable" is the current correct diagnosis with decreases in the future. 

 

angec's picture
angec
Posts: 664
Joined: Mar 2012

Thanks Alice, for that explanation. That is exactly what I wanted to say but could not find the wording at the time.  Glad you are back!  

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