Progress

I have been reading the posts here for a few months to get myself educated a little with my mother's(53 yrs. old) situation from the words of others going through what she is. I find most stories very encouraging and understand that no two cases are the same. I felt though that I should put the word out there for others who may be in need of encouragement as so many of you have helped me.

This is my first post here so let me give you a synaposis of the past year. Oct. 20, 2007 my mother went in for her annual. At this time she had spoke to her family dr. about a lump she felt when she pushed up against a waist-high counter. The doc immediately arranged for her to go to the hospital and have some tests done. Within 3 days she found out the gloomy news that she had RCC. 7 days after hearing the news she went in for a nephrectomy. They removed the right kidney and 9cm tumor. The surgeon was confident that the surgery went very well and that there appeared to be no leakage of the tumor. Follow-up with the surgeon and transfer to the oncologist we had found out that the percentage of return in other major organs was about 51% based on the fact the tumor was mostly stage 2 with some stage 3 cells present. 

She decided to join a clincal study Sutent vs. Surafnib. After a few weeks it was obvious she didn't get a placebo due to major thinning of her hair, palms and heels getting blistery and dry, reddening of the skin all over (almost like sunburn), and very puffy around the eyes. The study group kept decresing the dosage as they were sayin she was having a Stage 5 reaction to the medicine and were i guess trying to find the lowest dosage for response with the interest in keeping the best quality of life.

In June 2008 she went in for her 6 month CT Scan. A week later the gloomy news had returned when the docs said there was a small cluster of nodules in her lower right lung. She went in within 3 days for a surgical biopsy. The surgeon had also removed a few of the larger nodules. The news came shortly after that it had in deed metasized. With a room filled with all sorts of family members my mother told the oncologist to lay it on the line and he told her she had 6-9 months, but it could vary depending on her desicion of treatment. Side story-->(My mother's first words after hearing this was to me in front of everyone "you need to set a wedding date." I had been engaged for about 9 months at the time and wasn't planning to marry until the summer of 2009. However, losing my father 3 and a half years ago I couldn't take my chances and ended up getting married Aug 23, 2008.)

 Upon this news the clincal study obviously didn't want her anymore. It was released to her that she was on the surafnib. Which was the one she was hoping for but the oncologist was hoping for the sutent.

After looking at almost every path of treatment I-LK2, Interferon, Avastan, Sutent, etc...... My mother chose the Sutent (50mg). She actually started the first cycle about two weeks before the wedding. Her side effects kicked in of course two days before the wedding with the blistery painful feet. She got wheeled around in a wheelchair and sat as much as she could, but my mother CANNOT resist grooving and was on the dance floor surprisingly a lot that night!!! Over the course of Sept. she was off the medicine for two weeks and had healed up a lot from the side effects of the medicine. The end of Sept. it was time to go back on the medicine for the second part of cycle 1. The symptoms came back almost immediately and even more aggressive. Early Oct. she ended up having a Endometrial Biopsy done because she is post-menopausal and ended up menstrating twice. Considering her health they wanted to make sure all was well there. The results of that were negative and considering that the medicine has been effecting her so much we think that is the cause. If anyone has related issues with that or any facts we would appreciate the info.

 Anyway, Oct. 20, 2008 she went in for her CT Scan post cycle 1 of Sutent. Today she has received her results!!!!!! <-- can only mean good news lol :) The oncologist said there was "Considerable Shrinkage" to the tumors in the lung. One of them going from 1.3cm to 9mm... a decrease by 4 mm which comes to a 31%shrinkage!!! Hopefully the aggressiveness of the Sutent only keeps helping her until they are gone or they find a better means to treat RCC!!

 I can certainly keep anyone who's interested posted on how things are going as time moves forward. She will be starting cycle 2 of Sutent sometime in early November and wont have another CT Scan until after Christmas sometime! This news is defintely going to make it easier getting through the Holidays!!! 

Also, if anyone has any questions of Sutent or anything related to RCC I can certainly answer to the best of my knowledge or offer advice. I'm no Doctor and am learning as I go, but can do my best!

 Thanks for allowing me to share!

Love and Peace

Angela

Angela - it's great that your mother is fighting back so feistily against Stage IV. May I ask, however, if after the nephrectomy, she was put on the sorafenib/sutent trial on a 'precautionary' basis - ie, that at the time she had no known mets, but the docs wanted to find out whether either of the drugs could PREVENT recurrance (ie, metastasis) happening in the first place?

I have heard about docs seeing whether they can stop recurrance with drug therapy, but I've also heard, informally, that so far they haven't found it can. If I'm interpreting your mother's situation correctly, it sounds like for her, too, it didn't stop the cancer coming back.

That said, it's great that at least the drugs now are keeping the lid on the mets, and she is still going strong - and dancing at your wedding!

Best wishes, Julie 

On 10/28/2008 JulieUK wrote:

Angela - it's great that your mother is fighting back so feistily against Stage IV. May I ask, however, if after the nephrectomy, she was put on the sorafenib/sutent trial on a 'precautionary' basis - ie, that at the time she had no known mets, but the docs wanted to find out whether either of the drugs could PREVENT recurrance (ie, metastasis) happening in the first place?

I have heard about docs seeing whether they can stop recurrance with drug therapy, but I've also heard, informally, that so far they haven't found it can. If I'm interpreting your mother's situation correctly, it sounds like for her, too, it didn't stop the cancer coming back.

That said, it's great that at least the drugs now are keeping the lid on the mets, and she is still going strong - and dancing at your wedding!

Best wishes, Julie 

 

Yes Julie you did interpret my words correctly. She was put in the study for precautionary purposes. At the time, there were a few tiny nodules in the lungs, but they were not big enough for them to have a clear understanding if it had met. or not. The study for her was strictly to find out if it could help in preventive care. Obviously, reading the situation it did not help her in anyway, I think mainly for the reason that they kept lowering her dosage until she was on the lowest it could go. I have a feeling it would have absolutely helped had they kept her at the highest dose. Then again who knows for sure, like you said you have heard it has not shown progress in preventing reoccurance.

 I also must add that after all the paths drs. tried to give her, she will not ever do a study again. She doesn't feel that when in a study that they have a person's best interest. I feel that the study of medicine is a great thing and commend anyone who can do it (be involved in the study of)!! However, just viewing my mother's situation I can see that they basically "position" people to get an outcome to EVERY possible path. Which in this case I have a hard time not thinking that they were hoping for the reoccurance in the first place.  Just my opinion....

 Thank you

Angela

Angela - I guess the 'upside' from all this is that your mother is basically no worse off than if she hadn't gone on the 'preventative' trial. For most non-metastatic RCC patients, they are simply scanned to try and pick up the recurrance as early as possible, and THEN they start treatment. So that would probably have been the alternative.

It's obviously depressing that the new drugs can't act preventatively, but in the great scheme of RCC it must have been worth trying - though, of course, not necessarily on your mum! That's the devil with trials overall - fine in principle, but things look different when its you or your loved one that is the guinea pig! Though I know that with the original Sutent trials the Sutent-patients overall did better than the placebo/Interferon patients, and were crossed over to Sutent at some point in the trial because it would have been unethical to have kept them off Sutent any longer.

I'm glad to hear that Sutent is doing its stuff, and hope your mum keeps going well on it.

Julie. 

It would be interesting to know if ANY of the non-metastatic, post-nephrectomy patients beat the 'recurrance odds' by being on any of the drugs?????

Though I'm not sure if anyone yet really knows why RCC comes back in some people, and not others, or at different time intervals. Even if the drugs manage to postpone recurrance, that might be a valuable treatment option? Though the counterpart to that is that it might be better to 'save' the drugs for metastatis - shame to 'use their potency up' on prevention that may well not work. Tough call to make! Especially with not much data in the field.