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donsmrs's Message Board Messages

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RE: Starting opdivo after Votrient

by donsmrs - March 21 at 12:58 PM

On Mar 17, 2019 7:44 PM drbkgupta9 wrote:

Hi everyone,

I will be starting opdivo/nivolumab injection tomorrow for mRCC. Votrient kept my RCC in check for about 3 years but now seeing some new spots in the peritoneum. So, my oncologist is asking me to stop Votrient and start nivolumab.

Just curious how long it takes for the side effects to start. Anyone here who took nivolumab injection? How did you handle the side effects?

Thanks.

Not everyone gets side effects. My husband did not. Usually he reacted to everything. Especially votrient. He did not react to Votrient nor to Atezolizumab. Others have reported mild or little to no SE's. I have read for the most part that if you are going to have any SE's, they will start about the time the second dose is due. Also suspect that mental determination can play a role in this. Just a thought.....

On Oct 21, 2010 8:59 PM jane99 wrote:

Hello,

I have stage 4 RCC.And am on sutent. My kidney was removed in 6/09 and then a retroperitoneal mass in 4/10.

I had an mri with contrast yesterday and am scheduled for a ct scan with contrast next week. I was told when I had my kidney removed that I should not have contrast witout having a kidney fuction test first. For these scans, I am basically being told that the kidney function test is no longer needed. I went ahead and had the one yesterday, but am concerned about having another scan so soon. Is it true that over time one doesn't need to worry about the contrast anymore. My oncologist is a generalist and does not have experience with rcc. My insurance company refuses to let me see the specialist at our local cancer hospital because he is out of network. Should I be worried about the contrast or am I making a big deal out of nothing? Thanks for any replies.

Jane

 

 

You need a board certified nephrologist to be your voice. They may have to preadmit you for hydration and for premedication. There is a drug used for respiratory patients that can reduce potential injury.  In the 7 years since his kidney was removed, my husband had 2 CTs with contrast, both done with all the preps I outlined. After that, under advice from two other specialists, we got a nephrologist on board to follow my husband (yes, with all the other docs), and while he still had CT's, suddenly no more CTs with contrast were found to be necessary. Go figure. You would benefit from having a nephrologist to help preserve the integrity and function of the remaining kidney. GP,s, Family docs, cardiologists, internal medicine specialists, and oncologists- not one knows as much about keeping a kidney healthy as a nephrologist. I only wish we had known that from the very onset of the RCC.And I am an RN. Just sayin......

RE: failing kidney

by donsmrs - January 24 at 8:31 PM

On Dec 01, 2018 6:21 PM Grub52 wrote:

My husband has been on sutent for a year and half after having one kidney removed. the sutent has kept the cancer controled. The doc has taken him off the meds until we see him in January. Because the remaining kidney is not working well as a result of of the sutent, does anyone know what happens now  aren't all of the treatments going to be hard on the kidney?

We went down the same road and thanks to a nutritionist and our oncologist, My husband was started on curamed curcumin, 750mg. twice a day. Within 3 months, his kidney numbers improved greatly and his cholesterol dropped. He started making more healthy brood cells, because an angry, irritated kidney does no one any good. You can get this stuff cheapest on Amazon. Curcumin is also in turmeric, but only 10% of the curcumin is in a capsule of turmeric, You'd have to take a lot more turmeric than might be healthy. In any case, turmeric is not as beneficial for this purpose. Curcumin also works like a weaker form of plavix, a drug that prevents platelet clumping and clots. Over 18 months on curcumin, a lot of soft plaque leaves the body so the blood vessels are healthier, as will be the remaining kidney.  I fully agree that a nephrologist is needed.  My husband's nephrologist, who is not into complementary therapies,  took his time coming around to Curcumin but after 6 months or so, comparing Don's lab reports, he began to show new respect for it. This is never to be used instead of cancer drugs. This is to better enable the body to tolerate the cancer drugs that are needed. It does work. It got my husband off blood transfusions once the now-healthier kidney, thanks to the curcumin, began to produce the right amount of erythropoietin, the hormone that signals the bone marrow to make more healthy red blood cells. Hope this helps!

RE: Metastasis RCC

by donsmrs - January 13 at 5:41 PM

The newest thing is to use immunotherapy and sometimes also a targeted therapy after RCC surgery, and before recurrence. Anytime you have surgery, your immune system suffers, immediately afterward, a prime occasion for any stray RCC cell to propagate. So it makes complete sense to stimulate the immune system to prevent that. Docs started doing this new practice  late last summer as a result of some big clinical trial. It was, as they called it, "a game changer."  If your onc isn't doing that, go to a bigger medical center and get an onc who specializes in RCC. It DOES matter.  Remember that it's your body and you DO have the final say. Make it an informed, "say." Also know that radiological missed diagnoses occur 30% more in small communities where they don't see enough cases to know what they are looking at. That happened to my husband 4 times (local population about 90,000)  until we quit having his scans anywhere else but at Mayo, the nearest really big medical center. Hope this helps!

RE: Vietnam Veteran Agent Orange

by donsmrs - January 03 at 9:47 PM

Gentlemen, in 2017, the VA issue a public statement admitting that Agent Orange can cause RCC and that over 90% of those tested had the clear cell variety.  The VA approved 2 claims for RCC/ Agent Orange in 2017 just in my church community, evidently without a fuss. As an RN and my husband's nurse, I kept up on this cancer, its research and what was available to control it until my husband died, 19 months ago, after a 7-year battle with it. It was clear cell and very aggressive. He had been a FAC in Nam. Breathing in all that the good stuff as he flew an 01 Bird Dog through it.  Google the VA statement on RCC and Agent Orange and you'll see what I mean. And yes, an MD/ONC statement expressed just as you suggested, Tom,  is the way to approach it. Better to start the process sooner than later. DonsMrs

A couple guys mentioned Agent Orange and renal cancer and applying for VA compensation about 4 years ago on this web site. One was kind enough to post the court hearing where the judge ruled in his favor. We are certain that my husband's RCC came from that exposure in Viet Nam. You can find similar posts by googling for them.

On Apr 12, 2017 10:05 PM IMRisbe wrote:

On Apr 10, 2017 6:32 PM Babette66 wrote:

Well, after having a biopsy 3 weeks ago and just finding out today, only because I called their office repeatedly, I just found out that YES, you do have cancer! On your nose! They suggested MOHS surgery and are referring me.  Anybody out there ever dealt with this? 

Barb

I am a transplant reciepient (2003).  Unfortunatley that makes me one of a group that are almosty sure to get some kind of Skin Cancer.  In the years since the transplant, I have had on virtually every part of my body, over a dozen Squamous cell carcinoma (SCC), (removed surgically, (you know with the scapple, sutures, and scars.  There has been progress made some skin cancers can now be removed with Photodynamic therapy (PDT).  It would take to much space to explain it, but you can find out a little by Googling it.  There is always a few that required MOHS.  Those are the ones I worry about because they are to stubborn to go away with the first lines of treatment.

I have only been diagnosed with Basil a couple of times, but those were taken care of without MOHS.  Basil Cell seems to my knowledge to be the least ominous. (I am not a Doctor but I read a lot about the things that are affecting my life.)

According to the American Academy Dermotology: Basal cell carcinoma (BCC) is the most common type of skin cancer, Squamous cell carcinoma (SCC) is the second most common type and the last one really gets my attention and here is to hoping you, I or anyone we love ever get.  Melanoma is the deadliest form of skin cancer.

I used worry about scars but I have reached a point where I think being alive and able to write this note to you is more important.  I still feel that terror everytime there is a new diagnosis and I have a great impathy for your situation.  Good Luck!  I know you will do just fine.  

 
 
 
 
 
 
 
 

I had a squamous cell cancer on the bridge of my nose in 2010. I went to the plastic surgeon who did a full thickness skin graft. The local derms like to leave huge craters from the Mohs. The most recent studies suggest that surgical removal is every bit as effective as the Mohs. Back then, I didn't want serial trips to the dermatologists (they get to charge for every Mohs they do even on the same area, and two of those procedures is equal to what my insurance paid on a one-time swurgery (including anesthesia, the follow-up appt. with my plastic surgeon and anything else. We think we came out ahead, price-wise and as for the scar? No contest: the plastic surgeon was far better.

RE: efudix treatment

by donsmrs - March 23, 2017

On Mar 19, 2017 2:16 PM prettypolly wrote:

i have just been prescribed efudix cream and after reading all the posts about reactions i am absolutley terrified about taking it!! i have one visible patch under my eye but I believe that it can affect other patches that are not visible to the naked eye. any help or advice would be appreciated.

prettpolly

Ask the doc to prescribe imiquimod, (Aldara is the brand name), instead of Efudex. I personally think it is safer to use. This drug was originally invented for vaginal warts, but they found a now FDA approved secondary use to clear up small skin cancers and karatoses. It does not turn the face red or burn, unlike efudex. You only apply it 3 times a week and you can paperclip the package shut so it goes further. We have been doing that for years at our house. 

RE: CA 19-9 Level

by donsmrs - March 17, 2017

On Mar 16, 2017 1:29 PM kenengleson wrote:

Do not rule out anything - get her fully checked with scans. I have pancreatic and the cancer is very shifty in hiding from detection. Get it done quickly so you can attack it.

Fully agree, as an RN. My mom called me one day because her next-door neighbor had been seen in the ER during the night for chest and abdominal pain, was given 2 shots of morphine and sent home. Evvie was in her 80's. I recalled not ever having heard Evvie had her gall bladder removed. So I told Mom to go next door and ask Evvie to let Mom gently drop Evvie's lower eyelids to check the skin color inside. I told Mom if she saw any yellow, to tell Bob (Evvie's husband) to immediately take her back to the ER and have her checked for pancreatitis. Evvie never had gallstones but she did have the gallbladder sludge, which can do about as much damage. Turned out Evvie did have acute pancreatitis, (my Mom was the first person who knew to check Evvie's lower eyelids, it seems - scarey, huh?)  and because Bob heeded my second piece of advice (when they want to discharge her and then schedule surgery, dig in your heels and absolutely refuse to take her home until they have removed her gallbladder), Evvie did not come home until after her gallbladder removal. And they did try to send her home before they removed it (Hospitals get paid more that way, you see, and no I am NOT kidding).  Pancreatitis can land a frail, elderly person in ICU and sometimes on a respirator in the ICU if things really get out of hand. What alarmed me was that I could, from 1200 miles away, sniff out the issue with Evvie and send my mom, a lay person with no medical training, to check her out, and find the problem, and instruct the husband. I told Mom, "Looks like getting care when you are sick in your community, (the community I grew up in), is really not all that safe, these days, is it?"  Regarding the current issue, these days, often a good gastroenterologist would be the very next MD to go to. And I fully agree: the sooner the better. Now or even yesterday would be good.  If it turns out to be something really nasty like pancreatic CA, if the patient is anywhere near Jacksonville FL, or can get there,  Dr. Horacio Asbun at Mayo Clinic Jacksonville, is one of the top 2 GI and liver transplant surgeons in the country and he is excellent with laparoscopic surgeries. He treats the pancreas with techniques I can only describe as "elegant." Hope this helps!

RE: B12 injections

by donsmrs - March 09, 2017

On Mar 06, 2017 2:22 PM Nebka wrote:

Has anyone been offered or given B12 injections following an esophagectomy? What follow up treatment did you get after an esophagectomy?

People can develop a B1q2 deficiency from a variety of reasons. Age. Gastric banding or other surgery to lose weight; intestinal resection or even modest alcohol consumption.  But, you can take shots and we know that the sublingual B12 is not as well absorbed as the shots are, there is also a very effective prescription nasal soray called Nascobal. One spray once a week. No needles or return visits to the doctor needed. Most Rx plans will cover it. Our oncologist was very skeptical about the amount being absorbed through the nasal membranes. So, I suggested he draw a B12, since (my family MD ordered this) I had just used it that morning.  My B12 level was sky high, identical to what you might see after a B12 shot. If you hate shots and the doc is insisting, tell him/her you want the Nascobal instead. It does work, and out onc became a believer.  You doc can too.

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