Not Sure What 2 do Next?????

Things are wonderful--thanks for asking. I always get nervious before my doctor visits too---I think that's natural. I've convinced myself to treat it like Christmas. If I get the "present" I want then things are really great. If I don't, I make the best of it and focus on the next step. My wife and I are pretty sold on Sutent and you should ask your doctor the same question but here's our spin. Sutent works via the bloodstream so anywhere the blood goes (brain, bones included) Sutent can also travel. This is really important in that it can get to places where surgery is not always possible. My best advice is to get your husband on Sutent as soon as possible and see if he has the same fantastic results as I did---or as many others on this website. Keep up your spirits and let's talk again after you meet with your doctor.

Ha Lou good to hear from you. I know you are frustrated but hang in. When I referred to cycles the drug Sutent works on a cycle of 28 days on and 14 days off so each time you do that it is a cycle. I know that Sutent/Nexavar are the new wonder drug but I personally feel you have to have the best Oncologist and one who will give you every option and every drug available that will work best for Ron. I know my hubby was on Intron A which a lot of people thought it didn't have great results however it worked for him for 4 years. We tried Nexavar and as I said before that was a disaster for my husband but could be good for others. Now we are trying Sutent and that is okay for him thus far however with Nexavar and Sutent they are new drugs and the results are still coming in. We don't look for the end result we look for longevity and quality of life. So I think you have to ask your Oncologist all they questions you have asked us and then between the three of you come up with what is best for your husband. I think it is amazing we have new drugs but each drug comes with its own set of problems so that is where I think the Oncologist comes in. So take a deep breath and face your meeting about the bone scan with an open mind and lots of questions. I will keep you in my prayers. Let me know how it all works out. Mazzy

hi greg, hows your day going ? fine i hope. well my husband went in for brain surgery on thurs. 11-09-06. things turned out well.they removed two of the larger tumors out of the 14 he had.the surgeon came up to the hospital sunday morning to talk to us about our next step which would have been doing sterotastic radio treatment. he received an e-mail from the radiation oncologist(ro) saying she was refusing to treat my husband, i was a little confused as to why, he said that the (ro) said that it was not ethical or moral to her standards. the dr. wanted her to treat 3-4 mets at a time, high dose. the way our dr. talked that it was to many for her to treat at one time. "say what", i dont understand. the dr. is going to contact a few other (ro)for us to talk to.q..........im confused as to why this ro would refuse treatment for my husband,can you please help me figure this one out.thanks lou

I'm glad to hear that your husband's surgery went well and it sounds like really good news. The treatment you mentioned (sterotastic radio) is not part of my experience and I've not read about that approach. Hopefully there is someone else reading this site who can answer that specific question. Remember when I said that in my opinion, a RCC patient needs to take charge of his/her own treatment decisions? If it were me, I would ask your doctor to explain what the other doctor met by "not ethical or moral". You mentioned "too many at one time" which may be part of the answer but if this is the case what approach would they recommend? And why? You might want to ask these same questions to the additonal RO's when you get to talk to them. Just don't let that process drag out very long and delay your husband's treatment. Also, please prepare yourself in the event that you are given some bad news but as a RCC patient I always wanted my doctor to be open and honest with me and my wife. We needed complete information to make our best decision. I can't help but ask what happened to your pursuit of the newer treatment approaches such as Sutent or Nexavar? These two drugs have had tremendous success. I know that your insurance company has really pushed back about covering the cost. What is your primary doctor saying about these two options? Does he feel that your husband is a good candidate for either treatment? Ask him to be honest. If he does not feel that your husband is a good candidate, why not? If he feels that he is a good candidate, what is he doing to help your husband get this treatment? I know for a fact that Pfizer has a drug cost assistance program for Sutent and I would think that Bayer would have something similair for Nexavar. It is fair for you to expect that your doctor work harder for you and your husband. Ask him this question---what would he do if HE were the patient? And why. I hope this has been helpful. See you soon.

hi greg, i just called the dr. we have a appt. with him tomorrow to talk about starting sutent i'm also waiting for a radiation oncologist to give me a call to set up a appt.q.....if someone is on sutent can they still have stero-radio treatment. by the way good questions i'll bring them up tommorrow at the dr. office.thanks again,lou

Lou, this is betty jumping into your discussion. I have been with my 46 year old son Mark who has cancer metastasized from a GE juncture primary tumor to the liver (both lobes)with suspected cancer in a kidney and on the spine and just finished radiation for a chest wall tumor. He was told he had less than 3 months to live and that was nearly two years ago. He has yet to have a Pet scan and maybe he should have had one, but his doctors have always relied on CAT scans. i have found that it is helpful to ask the doctor why they want something like a Pet scan and how that test is related to treatment options. I also think it would help to find a way to stop crying and take good care of yourself. It will help to keep yourself strong. You need all the strength you can muster. I often say to myself and others "I am doing the best I can do and beyond that I can not go." You can check out a blog I write about my son's battles with cancer at http://www.thenextadventure.blogspot.com/ It helps me to write about what is going on. I would like to send you a big hug.

I stumbled across the cancer compas website just by chance and read your posting on the website. You are very interesting to me.

Mum was diagnosed with rectal colon cancer...is that what RCC is that you talk of?

She nearly finished 6 weeks of radiation and chemotherapy when the side effects came on hard, so had to stop. Alcerated mouth ,bladder infection (part of her bladder was removed when she had her rectal cancer removed, along with her uterus and 20 out of 30 lymph nodes which were found to be infected with the aggressive tumour.

December 3rd was the operation. Now its April 1st, shes been into hospital twice to stabilize her with fluids and laxetes!because of obstruction. We've had the doctors meeting saying that the CT Scan shows an obstruction in the rectum which means that  the chemo/radiation did nothing but make her very ill. Then later the MRI showed nothing in the rectum.(we were told that the CT cant destinguish between tumour or inflamation from radiation, that's great i thought, its just inflamed tissue) Then we found out that there was also abnormal tissue in the small intestines. I have pushed and rang  and got mum into an appointment 1.5 hours away for a PET scan. this scan is very good they say in identifying tumour.

Now that i've blabbed on for an hour about our situation i come to my question.

Is there any information which you can suggest for us to ask about or look up? Mums very positive and headstrong, but sometimes she just feels she just cant go on any more. The lower abdomenal pain weakens her will power to go on and the morfine, buscopan and anti nausia medication just constipate her.

You seem very knowledgable in this erea, I would sooooo appriciate any input you may have.

Kindest Regards and well wishes to you