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My mom is starting sutent- kidney cancer stage 4 mets into lungs/liver/bones

debbiemb20
Posts: 4
Joined: Sep 2010

This is my first post. This past July( 2010) my mom had surgery, she had a radical nephrectamy of her right kidney. The surgeon told us she was ok. Less than a month later we went to the er with my mom because she was feeling pain where she had the surgery and a fever. Turns out the cancer spread to her liver, both lungs and the first verterbre (this one I am not sure of). I am devastated to say the very least. I have already lost my dad to cancer. I am 29.
Anyways, she started sutent yesterday. I'd like to know if there is anyone that has been in a similar situation, what the results were/are, is there hope for this thing to be stopped? I am hoping beyond hope that the reading I have done online is wrong, and the sutent will make the tumors small enough so that they are operable, or, I dont even know.
Can anyone help?
THanks.
Debbie, in CT

clbl77
Posts: 6
Joined: Mar 2010

hi Debbie,

My mom was diagnosed in 2007 with kidney cancer. She too had a radical nephrectomy on the left side. She was not given any additional treatment at the time. Within a few months, they found a spot in the mediastinal section on the chest (between the heart and lung). She was also diagnosed as a Stage 4. My mom is 53 yrs old and I am 32. This past June she went into the hospital due to deteriorated mobility of her left arm. They did an MRI which showed metastatic tumors in her brain. They then did radiation treatment, which for her did not work. She just started taking Sutent the middle of August. I would appreciate any information anyone has regarding metastatic renal cell to the brain.

I have done a lot of research on Sutent and it is more effective on systemic tumors (in the body). I have read many stories of people on Sutent for years doing well living productive lives. I will keep your mom in my prayers. We dont know anything yet as to the results of the Sutent with regards to my mom. She has her first scan next week.

Good luck to you!

HeartofSoul's picture
HeartofSoul
Posts: 732
Joined: Dec 2009

Debbie so sorry to hear of your mother. It sounds to me that when she had her surgery in July 2010, just 2 months ago, that something went very wrong. Renal Cell Carcinoma(kidney cancer) typically is slow growing and non aggressive. Dr ideally would have done a cat scan on her abdomen, pelvis and lungs to determine if and where the tumors are. If in deed that was done, radiologist would have a report to show results. Did Dr only do ultrasound or scan of kidney? It sounds like she had tumors in her liver, lymph nodes and lungs before she was diagnosed with cancer and before her surgery in July. Sounds like they just did a radical nephrectamy to remove her right kidney. For the cancer to spread like it did in a matter of weeks from her surgery to the extent and size of the tumors just 6 weeks after surgery is unlikely, especially if cancer type was renal cell. What stage was she when she was diagnosed? If they find the cancer she has (examining kidney that was removed) was a low grade slow growing type, she may have had cancer for a long time (months or years) and not have had symptoms.

Background
Renal cell carcinoma accounts for approximately 3% of adult malignancies and 90-95% of neoplasms arising from the kidney. It is characterized by a lack of early warning signs, diverse clinical manifestations, and resistance to radiation and chemotherapy.

Increasingly, renal call cancers are diagnosed at an earlier stage, and nephron-sparing surgery and thermal ablation are gaining acceptance as a treatment of choice for smaller tumors. Radical nephrectomy is the standard for larger and central tumors.

Recent clinical trials have established the role of targeted therapy as the first line of therapy in patients with metastatic disease. While the optimal treatment strategy continues to evolve, three agents that target angiogenesis (sunitinib, bevacizumab, and pazopanib) and an mTOR-targeted therapy (temsirolimus) have been approved as front-line agents. These have largely replaced cytokines (immunotherapy) in treatment-naive patients. Current clinical trials are testing newer agents, combinations of approved agents, and the optimal sequencing of these agents

debbiemb20
Posts: 4
Joined: Sep 2010

Thank you for your information. She has had only 2 pills, and so far no side effects. Please keep me posted to see how things progress. I will do the same.
Thanks!

JoannePasillas's picture
JoannePasillas
Posts: 10
Joined: Sep 2010

Debbie my husband of 39yrs old had his right kidney removed also because he had a tumor double the size of his kidney. At that same time he got a byopsi of his liver and Dr.s also found more mass on his intestines liver and diaphram.. they removed what they could.. that was July 23 and just this tuesday he had the port placed to start Chemo therapy . They told us he has a cancer found in children called Wilms Cancer... I also would like info on what the outcome is and I will keep ur mother in my prayers, been doing alot of praying lately... God Bless...Joanne from Austin

debbiemb20
Posts: 4
Joined: Sep 2010

My mom is just finishing her first week of chemo. She is doing the pill Sutent, so it is different from your husband's treatment. What is he getting? So far there are no visable side effects from her chemo. She is in pain, but that is from the cancer itself. I'm hoping that this treatment works, the bad thing is we wont see actual results until the first round is done. So until then, we won't know what is happening, whether it is working or not.
I will keep you posted. Please let me know how you and your husband are doing.
I will keep you guys in my prayers. I too seem to be doing a lot more praying than everbefore...
Regards,
Debbie, from CT

pattymel
Posts: 18
Joined: Apr 2010

My husband was diagnosed 11/19/2009. He had been on Sutent until about a month ago. At first his tumors responded very well to the Sutent. His last cycle of Sutent, however, was very difficult for him, and he was very ill. The oncologist discontinued the Sutent and ordered CT scans. His tumors had grown, spread to liver and most likely to the colon. He is now on Afinitor, which our oncologist says he would like to use first on all RCC patient's but due to regulations the patient has to fail on Sutent or 1 other drug (I cannot recall the name) before this Afinitor can be prescribed. The oncologist appears to be very calm about all this, but I am a wreck. We will find out in a couple weeks if it is in his colon and see what to do from there, but the oncologist did say that since it is in his liver there is very high likelihood it is in his colon also.

When he was on Sutent my husband's side effects included mouth ulcers, diarrhea, pretty severe fatigue and sores in his nose. these were manageable until his last cycle of it, when he was very ill. I hope and pray your mom continues to do well on the Sutent. I'm just glad that at least now there is treatment for RCC, which as of just a few years ago there really was nothing to treat it with.
Patty.

michelaitaly
Posts: 5
Joined: Dec 2010

HI,
My name is Michela, i'm from italy and my husband has a kidney cancer iv stage, after interferon+bevacizumab for 6 months end after sutent for 6 months now we used afinitor.
I'd like to know how is your husband now?
Thanks

pattymel
Posts: 18
Joined: Apr 2010

Michela: My husband is feeling much better on the Afinitor. However, we have found out that his cancer is now obstructing his colon, and he will need more surgery. He has not been on the Afinitor long enough to have repeat scans done to check on tumor size. How is your husband doing? Patty

michelaitaly
Posts: 5
Joined: Dec 2010

PATTY: He feels very good, but the next (and first) scan is on 12/29/10. I'll write you. Micky

michelaitaly
Posts: 5
Joined: Dec 2010

The scan is ok, we continue to use afinitor, next tac on 02/25. By

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