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Paying for cancer treatment

sedonaman
Posts: 21
Joined: Jul 2018

Hello to everyone, I appreciate reading all the positive vibes from all on this discussion format. I am new to the Cancer word and still trying to get all the information i can while making my decisions.

I am a 65 year old male who has had his kidney removed from cancer, with a prognosis of stage 3 grade 3. I was told my type is aggressive and have higher chance of reoccurance, but as of now there is no

disease found on recent pet scan and mri. I am to have routine scans every 3-4 months. One doctor(urolgist) said I should try the new drug Sutent that is now being used as a possible preventative for

reoccurance. The oncologist said it was my choice to use

it but, the results are not well known because of it being new for this purpose. He said it may have a 8% chance of it not coming back. Urologist( who did surgery) said should not go by numbers but should do it any

way to increase my chance. I am confused as to what to do. My question for all of you is, this drug which is a pill taken every day for three weeks then off two weeks for a year, is very very expensive. I am on a

fixed income and of course I want to do what is right to help me beat this thing, but how do you all pay for it?   My insurance which is medicare with a supplement does not pay much. Did not know if anyone had

any words of wisdom. I feel confused, do i do the meds in case it helps and how do i pay for it?

Bellafelice
Posts: 57
Joined: Sep 2008

You can contact the drug manufacturer of Sutent and ask them for financial assistance paying for it. All the drug companies have some plans where you fill out a form with your income, etc, and they let you get the drug for a very minmal (maybe even free) price. Hope this helps.

sedonaman
Posts: 21
Joined: Jul 2018

Thank you for the advice, i appreciate it!

Hd67xlch's picture
Hd67xlch
Posts: 143
Joined: Apr 2016

Id wait till your next set of scans and see where you are at, it may never come back, he wants you to take meds for something that you dont have and may never have. They tried to get me to take Sutent 7-8 years ago and I refused, went over 5 years before I had a recurance, and then was able to handle it both times with surgery instead of meds. If it ever does come back on you then take the meds if surgery isnt possible, in the mean time just have your scheduled scans and live your life. Good luck

sedonaman
Posts: 21
Joined: Jul 2018

Thank you, I appreciate your personal experience and advice. My next scans are in November, hope i follow your lead with good results. Thanks

JoeyZ's picture
JoeyZ
Posts: 205
Joined: Mar 2018

Which type of kidney cancer do you have? That alone makes a difference in which treatment you receive. (If any.) Also, where are you located and what type of doctor/medical facility are you being seen at?

I have a particularly aggressive type cancer. If you wish read my profile. It might help you in some way, I hope.

May I also suggest that, while everyone here is fantastic, that you go to smartpatients.com. They have a lot of great knowledgeable people who can really steer you in the right direction for treatment or not, and which type and also help with paying for it.

All I know is due to the massive cancer tumor I had, the extremely aggressive nature of it, and that it had spread so far, my nephrologist and oncologist said I HAVE to have Chemo. I have been taking Cabozantinib (Cabometyx) for 6 months. I do have questionable places where the surgeons didn't get all the cancer out, and I have lesions in the lung, liver, thyroid and brain. Scans have shown a little bit of shrinkage and no new growth. No new tumors. I believe Cabozantinib is a newer chemo drug than Sutent. It is a very promising new drug and has already helped a lot of people. It is a TKI, and it is working good so far. Side effects can be difficult but they are manageable if you keep on top of it. Lots of help for that on the forums.

I wish you all the best and it looks like it's a little slow around here lately. People might be on vacation or busy with end of summer things. You will likely get more replies, though. But please DO go to smartpatients.com.

sedonaman
Posts: 21
Joined: Jul 2018

I forgot to say that I live in indianapolis, indiana and I am seeing a urologist who did the surgery and an oconologist at different facility. Although I am sure that my oncologist is knowledgeable he does not do a good job in explaining. I think that is why I feel so frustrated. thank you again.

sedonaman
Posts: 21
Joined: Jul 2018

Thank you for sharing your experience. i have renal cell carsinoma, grade three. It was in my kidney with one large mass and several smaller ones. Although it had spread throughout my kidney into kidney vein it had good margins. Had not spread as of surgery and get my next scan in November. I am so thankful for all the information that I have found on this site and all the great people on here. I will check lnto smartpatiens.com Thank you for your advice.

donna_lee's picture
donna_lee
Posts: 892
Joined: Feb 2009

Sutent was available to me after the first surgery, but the Oncology specialist who worked with my surgeons at Oregon Health Sciences University did not recommend it.  As there was not way to monitor the effectiveness unless there was an active site, I received no drug therapy.

But there were lymph nodes that had receive errant cells; within a year, a single node in the region the kidney was found to be enlarging on a CT scan and surgically reomoved.  The following year, the same situation; only it was in the low pelvis-also surgically removed.  The last one came out in 2008, and since that time, CT's have found other problems, but no evidence of Kidney cancer recurrence.

It's been 12 years since first Dx and 10 years NED.  Guess I'm lucky.

Only you and your Doc can make the decisions.

Good Luck and hugs,

donna_lee

sedonaman
Posts: 21
Joined: Jul 2018

Thank you for information concerning the sutent that was mentioned to you from your oncologist. That is my concern when the dr said there was not much proof of the effectiveness and what studies they have now are only 8%. They many have been patients who were not going to have reoccurance anyway. It is such a hard decision since there is no crystal ball that tells us what this C word is going to do. I  am happy to hear that your journey has lead you to a good place. I appreciate your advice and concern.

Thanks

paintergrl's picture
paintergrl
Posts: 47
Joined: May 2018

My understanding was that taking sutent as preventative post nephrectomy can delay the chance of metastasis (but only by about 8-10%) but once there was mets it did not change overall survival rates. It comes with lots of side effects. Personally (and my onc agreed) I thought it was a pretty crappy option and I have very aggressive grade 4 cancer. I would say to do watch and wait but be vigilant about scans.

sedonaman
Posts: 21
Joined: Jul 2018

Thank you for your information and appreciate you sharing it with me. I agree, the side effects for an 8-10 % is not a good balance. My next scans are in November, I hoping for good results.

Thank you!!

kankamuso
Posts: 14
Joined: Nov 2017

this is also something to be taken into account:

https://www.cancertherapyadvisor.com/renal-cell-carcinoma/renal-cell-carcinoma-rcc-adjuvant-sunitinib-increases-symptoms/article/794409/

sedonaman
Posts: 21
Joined: Jul 2018

Thank you for that article, it was very interesting and definately something to take into account. I have been wanting to see something factual in writing. Thanks for passing this on to me.

 

kankamuso
Posts: 14
Joined: Nov 2017

You are welcome. Hope you find a decision that helps you beat this. My experience (my father is the patient) is that he first underwent a radical nephrectomy some years ago. After 5 years it appeared again on the other kidney. In a few months, again on the remaining part. So last year he underwent two partials and three months after the last one two small nodules appeared again (ther is no space left!). Now he has passed the revision and the nodules have not grown so they have decided to remain observant for the next year. From what I read, RCC is a hard-to-treat cancer because it can re-appear many years later as my father's did. Co-adjuvant therapy was not present at that time and sunitinib seems to help to some degree. It is clear to me that I would personally try it but my concern is the question:

a) Is it really preventing it to re-appear

b) os it it just delaying it and people with reccurrences are those that would recurr later?

In the latter case, are they loosing the opportunity to be treated using sunitinib when this happens or there is no resistance created? If there is no resistance, I would definitely go for it. If it does affect my quality of life, I would be able to stop it anyway...

That is what I would do.

the thing with cancer treatments is that we are always 'late' related to what is known in the sense that, in this case, it was approved based on a study perfomed years ago. Not there will be new studies comparing that one with real lfe events and those esults will probably be much more precise. But, again, it will be affected by new meds effects, surgery techniques (look at the CARMENA study), etc... So I would go for doctors opinions (two or three) and take my decission based on that info and my gut.

Best whises

sedonaman
Posts: 21
Joined: Jul 2018

Thank you again for your thoughts and your dads story. Your questions concerning going with the sutent are great questions, and one I need to think thru. I have been thinking of getting another drs opinion.  I appreciate your input and best of luck to your father and you as well.

Manufred's picture
Manufred
Posts: 239
Joined: May 2017

Adjuvant therapy after surgery has never been a big thing with mRCC as it did not always show benefits (8% is difficult to accept or substantiate), and it is usually better to wait to see what actually happens. 

Sutent is Sunitinib, which was the "other arm" of the Checkmate 214 trial I was part of.  When the Suni stopped working, people on it were moved onto the immunotherapy which has now been shown to have a much better success rate.  Check my profile for details.  Sutent is neither new nor optimum.

If the cost of the treatment is an issue I would advise you to seek a better option for a better cost/benefit result.  Those of us who live in countries with a more helpful universal health system don't have to make these decisions on economic grounds, just medical outcomes.

Best Wishes,

Fred

sedonaman
Posts: 21
Joined: Jul 2018

Thank you for your story and advice. I agree 8% does not seem to be very substantial. So glad that your trials worked so well for you. I am so thankful that we live in a time when there are so much knowledge in the scientific and medical world. I on the other hand feel bad that decisions need to be made because of cost. I will be checking into all options thank you for your advice. Best of luck to you.

todd121's picture
todd121
Posts: 1425
Joined: Dec 2012

Can you see an oncologist who has RCC-specific experience?

I had Stage 3 Grade 3. I tried a trial for this but it used everolimus. 2 years after my kidney was removed I had a metastasis to my adrenal gland and had to have removed. They unblinded me from the study and found out I had had a placebo. They offered me another trial for adjuvant therapy (where you take a medicine even though you don't have any visible cancer to keep it from coming back) using votrient but I refused.

These drugs have a lot of side effects. They are hard on your body. Sutent. Votrient. Look at the side effects. It's quite a few. They can mess up your liver, cause high blood pressure, turn your hair white, give you diarrhea, make you naseous, etc.

I don't think the drug was that affective to keep the cancer from coming back. If it were me and mine came back again and they removed it again, I wouldn't take these drugs when I was otherwise healthy. That's my opinion. I don't think the effectiveness warrants the side effects and the expense. If the insurance company won't pay for it as this mode of treatment, I think that's another indication that it may not be a very worthwhile option.

Stage 3 Grade 3 you need close followups. If it does come back, you want to catch it early. For me this is very important. After surgery I had a baseline MRI of my brain with contrast, a bone scan, and a CT of chest abdomen pelvis (with contrast if you can) all as a baseline and to make sure there no mets at the beginning. Then I got CT scan of chest/abdomen/pelvis every 4 months the first year and every 6 months the second year. I would have gone to yearly after 2-3 years. However, I had that met to my adrenal. So for the last 3 years I've been getting followups every 3 months (CT of chest/abdomen/pelvis) and some blood tests. You want to catch it early so it might be operable. The longer it goes undetectable, the more likely it will not be operable.

Wishing you the best. Talk to your doctor about the tradeoffs. If it's somebody that you can't talk to, find somebody else/get another opinion. Try and find a medical oncologist who specializes in RCC. These are usually researchers at universities and cancer hospitals.

Best to you,

Todd

sedonaman
Posts: 21
Joined: Jul 2018

Thank you feed back and opinion, i appreciate. I actually do not know if my current onocologist is a rcc specialist. I will need to check. thanks for the suggestion. I am due to have my first scan in november.  I have been told rcc can me  very unpredictable and they said the same thing about coming back later than five years, so i understand your suggestion to keep up the scans. thanks

a_oaklee
Posts: 436
Joined: Nov 2013

Wow.  Everything Todd said!  He's been around for awhile reading alot and so have I (for my husband).  I agree with his opinion.  I would not take these drugs as adjuvant therapy.  I think your body needs to be as healthy as it can be, for as long as it can be.  Sutent is a tough drug to take.  But it does work wonders for a number of people.  I'm glad it's part of the arsenal.  Another factor that you might want to think about is that clinical trials frequently want patients who have not had any previous medications.  If you take sutent, you could make yourself ineligible for some.  Please also join smart patients.

todd121's picture
todd121
Posts: 1425
Joined: Dec 2012

If you take Sutent and it does come back, you'll have used up Sutent already as one of the drugs you could use to fight the cancer. They most likely would assume any mets that develop while taking Sutent are resistant to Sutent.

I don't think they know enough about the adjuvant therapy usage of these drugs to know what they will do if your cancer comes back while taking them, but I would assume they would need to move to another drug.

Did you look at the effectiveness of the drug as an adjuvant therapy? I don't think it stopped the cancer from coming back. I think they only showed it delayed the cancer coming back. I also don't think it delayed it that much. I really might be wrong on this. Please ask your doctor. You need to weigh all of this to make a good decision. Cost. Side effects. Effectiveness. What will happen if it comes back while taking the drug (including eligibility for trials as pointed out above). This should be decided by you with advice from a doctor that really understands RCC risks and treatment options.

I know I've had my Stage 3 Grade 3 turn into Stage 4 and my medical oncologist (an RCC expert at City of Hope) has not been suggesting I start taking Sutent as a prophylactic.

BTW, my clear cell RCC Stage 3 Grade 3, the prognosis according to 2 different RCC medical oncologists the risk was about 25-30% chance of it coming back. Then it came back after 2 years. After it was removed on the second go around, my oncologist gave me a 35-50% chance it would come back and another put it more like 25-30% again. It's been over 3 years now. As time goes on the risk goes down. Whether you do the adjuvant therapy or not, you need close followups and I would never stop the followups even after the magic "5 year" mark. That 5 year mark has nothing to do with RCC. The risk of RCC returning does not go to 0 after 5 years. I have several friends that have had RCC and have had it come back 10 years or even 20 years later.

Best to you!

Todd

sedonaman
Posts: 21
Joined: Jul 2018

Thanks again for all your info. I realize now I need to stay on top of this and learn as much as I can. I appreciate all your experiences you have shared.

sedonaman
Posts: 21
Joined: Jul 2018

I have learned so much on this forum and appreciate your advice and suggustions. The infor about taking sutent now may effect any future trials is great to know. Thank you so much for that thought and information,

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