My Experience: 4 Years On Sutent

[rachel.mcdonald1234]

Hi All. My name is Rachel. I was diagnosed with ASPS about 4 years ago. Mets to lungs, never found primary. I was on Sutent from March 2014 to January of 2018. Sutent held my cancer stable and we even saw a little bit of shrinkage over the 4 years. Unfortunately, I reached intolerability with the Sutent in December of 2017 and finally came off of it in January of 2018.

Thought I'd share my experience, side effects, and solutions we found that worked for me!

I took 37.5mg every day. I found that I was able to make it about 10 months straight and then I would need a week or two off to recover from the side effects. It actually worked out that about every 10 months I needed to be off the Sutent anyways for surgeries. (Not all surgeries were related to cancer, for one of them I needed my wisdom teeth out).

Here are the side effects I noticed and also any solutions I found:

- Hair turned white - Hello Box Dye!
- Skin lightening
- Sensitive mouth to spicy foods, hot/cold - Magic Mouthwash
- One of my gums completely receded - Unfortunately, we caught this too late and I ended up needing a gum graft. The dentist now sees me every 4 months.
- Some "mild" thickening of the heart wall - This one is a very very very rare side effect that I think I only experienced because I was on Sutent for so long. This one didn't happen until towards the end of the 4 years. My cardiologist said that exercise may be able to reverse it. So, for now, I am exercising and we are monitoring it.
- Chronic diarrhea - This one got to the point where anything I ate or drank would run right through me. Liquid Immodium was my life saver. Liquid Immodium returned me back to normal. Liquid Immodium is literally everything.
- Stomach cramping with the diarrhea
- Weight Loss due to lack of appetite and the diarrhea.
- Limbs went numb easier.
- Hand/Foot syndrome just on my feet - Every night I put bag balm on the bottom of my feet, wrapped in cellophane, and then put a sock on. Also ice packs!! Sometimes I slept with ice packs by my feet if the cellophane and socks got too hot.
- Fatigue - Was told by my doctors exercising would help. Also tried the ketogenic diet for a month and that helped give me energy. Ketogenic diet didn't last long because I had a hard time maintaining weight.

I did not have all of these side effects at the same time. Interestingly every time I went off the Sutent, I got different side effects when I went back on the Sutent. It was kind of like spinning the roulette wheel of side effects each time.

What eventually became too much to handle was the fatigue and the thickening of the heart wall. These two side effects lead us to the decision to switch medication. The other side effects while sometimes miserable were manageable. I found that it took a lot of trial and error to find out what helped my side effects. Different doctors had different suggestions. Sometimes my PCP came up with the right solution and sometimes my oncologist did.

[D.ap]

Hello Rachel

Welcome to iCureASPS .
So good to talk to you again. : )

I'll let folks who have been and who are currently on sutent, ask or comment, however I will comment on the ketogenic diet as Josh and his wife embarked on the diet with the thought utilizing ketones verses glucose, as the thought is cancer thrives on glucose/sugar? The starvation of cancer by virtue of lowering glucose resources and allowing ketones as substitution?
He too lost weight and felt the cons outweighed the pros, at that time of his life.

My question is , what causes the thicking of the walls of the heart? Is it the lack of or the anti vascular inhibition?

Debbie

[Olga]

Rachel,
thank you for sharing your experience, it is a very valuable input.
I have a question re. cardiac problems - did you have a cardiac MRI? Ivan's heart metastasis looked like the mild thickening on the CT scan and was not recognized on the early stage by the cardiogram.

[Bonni Hess]

Dear Rachel, I am so sorry for your ASPS diagnosis, but am very grateful that you found your way to this CureASPS site and that you have thoughtfully reached out to graciously share your Sutent treatment experience. Since ASPS is such an extremely rare disease, shared researched and anecdotal experience are truly two of our greatest weapons in fighting this very challenging disease. I know from your recent ASPS Group Facebook post that you are currently being treated with the promising new drug Anlotinib, which has VERY thankfully and encouragingly thus far provided 16% shrinkage to your lung mets. I share the great joy and strengthened Hope of your successful Anlotinib treatment response thus far, and will be holding VERY tight to Hope for continued treatment success. I Hope that you are being closely monitored with regular scans including a chest CT and abdominal/pelvic CT or MRI every 3-6 months, an annual brain MRI, an annual full body bone scan, and a cardiac electrocardiogram, all of which are critically important to adequately monitor the status of your disease. It is very perplexing that your primary tumor has not been found/identified, and it seems that this would be very important for the oncologist to do since the presence of the primary tumor can interfere with the effectiveness of a systemic treatment. I Hope that you will actively participate on this Discussion Board and share your Anlotinib treatment experience and results as you are able. CureASPS is an invaluable source of shared information and strengthening support and encouragement for all of us who share this difficult battle with this insidious disease. Take care dear Rachel, keep in touch as you are able, and know how deeply I care about you and everyone in our ASPS Community. With special caring thoughts, healing wishes, and continued Hope, Bonni Hess, mother of now 35 year old Brittany diagnosed 16 and a half years ago at age 19 and currently stable for the past almost nine years on a Cediranib Clinical Trial

[rachel.mcdonald1234]

Hi Debbie,

In regards to the ketogenic diet: yes that was my thought too. Since cancer thrives on glucose/sugar to cut that out. I had a scan after I tried the ketogenic diet for a month. Some of my tumors did shrink (I don't have specific numbers for you off the top of my head). Not sure if I can contribute that to the ketogenic diet as I was also on Sutent at the time. But the shrinkage did make me think that the ketogenic diet could be a good thing to do if losing weight wasn't an issue.

Good question about thickening of the walls of the heart. I don't have an answer for that. I walked into that appointment expecting it to be boring, so I was quite shocked to hear that my heart had been affected. I couldn't think of any questions at the time, I was just in shock. I will ask them next week at my appointment. It would be good to know what caused the thickening.

[rachel.mcdonald1234]

Rachel,
thank you for sharing your experience, it is a very valuable input.
I have a question re. cardiac problems - did you have a cardiac MRI? Ivan's heart metastasis looked like the mild thickening on the CT scan and was not recognized on the early stage by the cardiogram.

Hi Olga,

I did not have a cardiac MRI. Wow, that is so good to know. I'm so sorry Ivan has heart metastasis. I will certainly mention this to my oncologist and cardiologist. Thank you so much!

[rachel.mcdonald1234]

Dear Rachel, I am so sorry for your ASPS diagnosis, but am very grateful that you found your way to this CureASPS site and that you have thoughtfully reached out to graciously share your Sutent treatment experience. Since ASPS is such an extremely rare disease, shared researched and anecdotal experience are truly two of our greatest weapons in fighting this very challenging disease. I know from your recent ASPS Group Facebook post that you are currently being treated with the promising new drug Anlotinib, which has VERY thankfully and encouragingly thus far provided 16% shrinkage to your lung mets. I share the great joy and strengthened Hope of your successful Anlotinib treatment response thus far, and will be holding VERY tight to Hope for continued treatment success. I Hope that you are being closely monitored with regular scans including a chest CT and abdominal/pelvic CT or MRI every 3-6 months, an annual brain MRI, an annual full body bone scan, and a cardiac electrocardiogram, all of which are critically important to adequately monitor the status of your disease. It is very perplexing that your primary tumor has not been found/identified, and it seems that this would be very important for the oncologist to do since the presence of the primary tumor can interfere with the effectiveness of a systemic treatment. I Hope that you will actively participate on this Discussion Board and share your Anlotinib treatment experience and results as you are able. CureASPS is an invaluable source of shared information and strengthening support and encouragement for all of us who share this difficult battle with this insidious disease. Take care dear Rachel, keep in touch as you are able, and know how deeply I care about you and everyone in our ASPS Community. With special caring thoughts, healing wishes, and continued Hope, Bonni Hess, mother of now 35 year old Brittany diagnosed 16 and a half years ago at age 19 and currently stable for the past almost nine years on a Cediranib Clinical Trial

Hi Bonni,

Thank you so much for your very sweet and encouraging message. Yes, not finding the primary was very puzzling to everyone involved. At the time of diagnosis, I underwent about every scan I can think of: CTs, MRIs, a full body PET scan. We looked at each organ, each limb, and everything came back clear except for my lungs. My mom even had a list of my organs and limbs posted on our fridge. She had a "clean" column and would move each organ or limb over to the clean column as the results came back. Thankfully all body parts except for my lungs made it to the clean column. Hoping one day my lungs make it over too :).

They could also tell that the lung tumors were metastatic. Interestingly, I had thyroid cancer in 2008 and Debbie wondered if perhaps the thyroid cancer was actually a misdiagnosis. Could it have been ASPS and the thyroid cancer was actually the primary? An interesting theory - one I'm not sure we'll have the answer to. It's so encouraging to hear that your daughter Brittany was diagnosed 16 and a half years and has been stable for the past nine years. Makes me very hopeful and happy. I hope she continues to do well.

[Olga]

Rachel - I am personally not aware of ASPS primary in thyroid, but I know of couple of cases when thyroid was a site of ASPS metastasis. Not finding the primary might mean that it spontaneously regressed at some point, after it seeded to the lungs, where mets could sit dormant for awhile starting to grow later. Then the primary could have been in the lung? If the primary regressed, you might be a good candidate for the immunotherapy treatment/trials because it could mean your immune system is generally able to recognize the ASPS tumors, if the right conditions are met.

[Bonni Hess]

Hello again dear Rachel and thank you for your very prompt and kind response and the additional helpful shared info. Both Olga and Debbie who are very involved, knowledgeable, and experienced with their sons' individual very courageous and determined ASPS battles, are an excellent source of information and insights, and they have offered some very good thoughts. While the inability to determine the location of your primary tumor remains very perplexing based on my extensive knowledge and experience with ASPS, I will never say never about anything related to this unpredictable and little known disease. The thing that I do know with great certainty based on my 16+ years of hard earned ASPS experience, constant research, observations, and networking with other ASPS patients/families, is the importance of removing the primary tumor if possible to prevent it from continuing to disseminate tumor cells into the bloodstream, and being very pro-active and as knowledgeable as possible in fighting and managing this very challenging disease. Regular and appropriate scans are essential to find any new mets at the smallest most treatable size. Although there is unfortunately currently no known permanent cure for ASPS, VERY thankfully there are several promising new systemic treatments to help stabilize progression of the disease and shrink/destroy mets including treatments like Brittany's Cediranib, your Anlotinib, and Immune Checkpoint Inhibitor (ICI) PD-1/PD-L1 treatments like Ivan's Keytruda (Pembrolizumab) and Josh's Opdivo (Nivolumab). Even though ASPS is extremely rare, please know that you are not alone in your battle dear Rachel , and that those of us on this CureASPS Discussion Board share your battle and are here to provide shared information, special caring, and strengthening support and encouragement. Take care, stay strong, and keep in touch. Heart to heart with deepest caring, healing thoughts and wishes, and continued Hope, Bonni

[D.ap]

Hello all
Rachel , your thyroid was surgically removed at an early age? As you so graciously mentioned above . : )

I found a primary case of ASPS thyroid ,with a child


https://www.sciencedirect.com/science/a ... 4810000043

Also wasn’t it dx’d as papillary cancer ?

Was the surgery involving a large cancered area ?

[D.ap]

Rachel
Found a medical write up of a patient being dx’d with metastic ASPS in the breast, after having been dx’d with thyroid cancer. However they did find the primary in the thigh .

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4583979/
Also posted in the “medical section “ as all info is important when dealing with this incredibly rare
sarcoma .


http://www.cureasps.org/forum/viewtopic.php?f=2&t=1553

[Olga]

Rachel - the article re. primary ASPS in thyroid in a child is extremely interesting in your case. You can request that tumor samples re-review based on this article, they usually are archived at the hospital pathology for a long time.

[Bonni Hess]

Dear Rachel, All of the information that Olga and Debbie have found and thoughtfully shared regarding a couple of case histories of the rare location of some primary ASPS tumors is very interesting and certainly worth further exploration and evaluation with your oncologist to try to determine and ensure that your primary tumor has been removed. Since ASPS is SO extremely rare and little known even by many oncologists, it seems that a diagnostic mistake could have been made about your thyroid tumor, and this should be pursued and corrected if possible. With special caring thoughts, healing wishes, and continued Hope, Bonni

[rachel.mcdonald1234]

Bonnie, Debbie, and Olga

Thank you for your opinions on my thyroid cancer. Re: Debbie, yes the thyroid cancer was papillary carcinoma. They did a complete thyroidectomy. I will certainly print out those two articles you sent and run them by my doctors. That would be encouraging if we found out the thyroid was the primary tumor and removed back in 2008. No thyroid tissues or signs of cancer have appeared in my thyroid area since. Very thankful for that!

[D.ap]

Hello Rachel
I was wondering if you found out any info on your thyroid pathology ?
How’s the Anlotinib trial going ?
We have several people either on the trial and or thinking of going on the trial , that would love to hear of your experience .
Love