The cancer drug Sutent, and side effects?
January 21, 2008 2:10 PM   Subscribe

I have a question about the cancer drug Sutent, and it's side effects, if anyone has any experience with it.

My 43 year old husband was diagnosed with kidney cancer and a nodule on his lung. He had surgery a month ago, removing the cancerous kidney and the nodule, and we were recommended to an oncologist. Our first meeting was today. My husband is a Stage 4, considered advanced even though they may have removed all the cancer at this moment. The oncologist has suggested Sutent for our therapy. What we're looking for is anyone with any experience with this drug, and any side effects they've encountered. Thank you in advance!
posted by annieb to Health & Fitness (5 answers total)
Hi - sorry no one has answered your question yet - I haven't taken Sunitinib (Sutent), or given it as an RN, but am loosely familiar with it's side effects. Since no one has given any personal accounts yet I'll give my 2 cents. Please continue to seek out others who are experiencing similar drug regimes because patients and families have lots of great information to share with each other. Also question your oncologist and nurses as much as you can. Utilize community support groups that are available - they also have great information for you. If the hospital you're at has support services try to become familiar with them.

The thing about chemo drugs is they work on rapidly reproducing cells. Cancer cells rapidly reproduce. But our bodies also have many different functional cells that rapidly reproduce that chemo effects. These cells are sort of innocent bystanders of the cancer treatment. It's the effect on these cells that produce most side effects. Knowing what to watch for and taking any preventative measures can help minimize those side effects.

These cells are:
1. HAIR: the cells that make up your hair. That's why you see hair loss when people are on chemo. This doesn't always happen immediately.

2. GI TRACT: the cells that line your mouth, anus, and entire GI tract. This is why you can sometimes experience mouth ulcers, GERD, or diarrhea. Most people use a daily mouth rinse frequently. This can help minimize mouth ulcers from forming. Your doc will probably have something like this for you to do - if not, ask them about it. Many people also take preventative medications to stop GERD from developing. Bowel movements are monitored for any changes in your regular habits.

3. BONE MARROW: this is where your platelets, white blood cells and red blood cells are made. Platelets help your blood clot - so sometimes people on chemo bruise more easily, or bleed longer because they don't have as many platelets as usual to repair those areas. When your WBC's lower in count, you become a greater infection risk. Especially if neutrophils drop - this is the WBC that protects the body from bacterial infections. When RBC's drop, the part of blood that carries oxygen is low so the person feels fatigued faster. When the brain asks a muscle to move, the blood in that muscle has less oxygen carrying hemoglobin to supply the muscle with the energy it needs. Hence, fatigue.

These numbers generally drop about a week or two after chemo has started. That's why you might notice additional side effects from the chemo - a few weeks later. Ask for copies of your labs when you visit your doc. They can easily print them up and you can then learn what values to watch and know what to expect.

4. GONADS: male and female reproduction ability may be effected. Ask your doc about this.

5. SKIN: Skin can become drier, more fragile. You'll want to be careful to prevent injury and protect sensitive skin from the sun.

That's the general stuff on chemo. The most common side effects for Sutent are (in order): diarrhea, nausea, mucositis (the mouth ulcers), taste changes (some people like to avoid their absolute favorite foods on chemo), nausea & vomiting. Ask you doc about preventative measures and medications.

Not so common side effects are rashes, dry skin, hand-food syndrome.

Your doctor will be monitoring for hypertension, any heart issues, or bleeding. Sutent sometimes causes hypertension. This can be controlled by medication usually.

Terms you might soon become familiar with:

Neutropenia: when neutrophils are low. These are the WBC's that fight bacterial infections. These cells are made in the bone marrow and drop about a week or two after chemo.

thrombocytopenia: when platelets are low. Platelets help your blood clot. Also drops a week a two after.

anemia: low hemoglobin (oxygen carrying part of the red blood cells). Makes people fatigued and sometimes breathless (body is trying to get more oxygen - so it makes you breath faster). Like the neutrophils and platelets these drop a couple weeks later.

People often get growth factors (ie. neupogen) and blood/platelet transfusions to correct these issues.

Best wishes always to you and your husband. Keep a positive attitude - that does amazing things. Please feel free to mefi mail me if you like. Always consult your oncologist about any collaborative / complementary therapies you might like to consider. For example many people find acupuncture helps a lot with nausea - you can do this - just speak with doc first. Be wary of anything that proposes to replace traditional oncologic therapies like chemo (high doses of vitamin C is a current trend). Anyone who is not a MD and says they can cure your cancer with something like that is a fraud.

Of course you probably know much of this. I hope this wasn't repetitive stuff you already heard and not at all what you were looking for in your question. But it's the stuff my patients seem to appreciate me talking about with them during chemo. Hopefully this is a little helpful and not overwhelming or confusing. Know that NO QUESTION is ever too dumb, silly, complex, anything to ask you doctor. They care about you. They want to help you as much as they can. I want to wish you both the best.
posted by dog food sugar at 12:25 PM on January 22, 2008 [1 favorite]

Oh and you'll want to avoid grapefruit juice while on this chemo - I don't remember the exact reaction but I bet it has something to do with increasing the risk of hypertension or reactions with any hypertension medications. Your doc will probably talk with you about this.
posted by dog food sugar at 12:51 PM on January 22, 2008

Thank you so much! Every little bit of information helps. I don't even care if it's repetitive (and some of it isn't), I feel better reaching out to people and gathering all that I can. Thank you again, and thanks for the offer of e-mailing you.
posted by annieb at 4:14 PM on January 22, 2008

Additional information about the side effects of Sutent (Sunitinib).

And here.

This is the Gist Wiki main page, their page on dealing with Sutent side effects, alternative supplemental info, which may be helpful to you.

For tender feet, there is *nothing* like Crocs shoes or Crocs style wannabe shoes, which are just as fine. Or maybe a Crocs men's slipper.One can buy them cheaply at Target.

Life Extension, which manufactures vitamins and supplements, offers free advice from research oncologists. (The number is at the top of the page "health advisors"). I found them tremendously helpful before and after my taking chemo (Paclitaxil and Carboplatin).

There are research oncologists at Life Extension, who specialize in different types of cancer treatment. They do *not* try and sell you or anyone vitamins.

On a positive note about the chemo Sutent:

Exciting results have come from studies of multitargeted tyrosine kinase inhibitors, "small" molecules that act on multiple receptors in the cancerous cells, like Tykerb and Sutent. Targeted "small-molecule" therapies ruled at the recent annual ASCO meeting of oncologists. The trend is away from the monoclonals to the small molecules.

If your husband is on pain meds he's likely to get constipated. I found taking magnesium citrate helped the most, easy, no nausea, either pill or liquid. But ask the onc to make sure. If really constipated then glycerine suppositories first.

If the chemo causes pain in the bones or joints, the doctor might prescribe arthritis pain patches, which can be cut smaller for different joints, like elbows or ankles.

I found beta-carotene capsules, which have intensely orange carrot extract inside them, can be smeared inside the mouth for mouth and tongue sores.

Pepto Bismol swilled in the mouth or dabbed on the lips can help give relief from mouth sores because it has bismuth in it.

If he gets pain in the hands or feet, ask the doctor to prescribe a TENS unit, they're affordable.

NIVEA Extra Enriched Lotion was the best I found for the skin dryness caused by chemo. Linacare seems to specialize in treating chemo damaged skin with their unscented creams.

Everybody who comes into the house when your husband is on chemo should wash their hands and definitely not come in with any kind of cold. Ever. Especially if they have been around young kids in kindergarten. This is because the immune system radically drops on chemo and any infection or bacteria brought in by others can be seriously harmful. Your husband should be careful while handling paper not to get papercuts, because his skin will be dry. He needs to be careful handling a knife for example, not to cut his hand as this can be an entry place for bacteria.

Going on public buses I wore a medical mask (got a bunch for free from the dentist) and told my seatmate I was undergoing chemo.

I found that taking L-Glutamine helped me in a number of ways: for my gut, more energy and less nerve damage. Ask the oncologist if it's ok with Sutent.

My loving thoughts go out to you and your husband.
posted by nickyskye at 10:15 PM on January 24, 2008

I just started taking Sutent two weeks ago. Had kidney removed at Mayo clinic in September and they found spots on lung. Am in trial where I take 37.5mg per day-every day. So far worst side effects are almost total loss of taste buds and cracks on bottom of my feet. So added fatigue but otherwise nothing really that bad. Trick will be to see if its worked in slowing down growth of spots on lung.
posted by jmoskow at 10:21 AM on April 23, 2008

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