Everolimus (Recap of Lost Posts, Topic Created by Lulu7582 on Dec 27, 2018)

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This recap includes posts that were lost during CSN's data outage from 10/29/18 to 1/30/19.

 Lulu7582

Dec 27, 2018 - 12:11 pm

Good morning ladies,

Hope everyone had a lovely Christmas / Holiday  with family and friends. Just wondering if anyone else is on everolimus. Just started 2 weeks ago (love my new gyn/onc) and hoping this drug will kill the little beasts!!! Taking it in combination with Letrozole. New doc is going to see how things go. Have had a lot more tests....genetic testing and genomic testing. Went to Moffitt last Dec and they didn't suggest any of this....anyway thankful for this new doc and her care and compassion. 

As far as the side effects from the everolimus....yep dealing with mouth ulcers....ugh!! but if it's killing the cancer cells I will manage them and tolerate them. 

Happy healing new year! Lulu xoxo

 

MAbound

Dec 27, 2018 - 4:48 pm

Mouth Ulcers

I don't know anything about what you are on (will have to check it out later), but mouth and esophagus ulceration were a concern during my chemo and I was advised to make a solution of 1 tsp. baking soda in 8 oz. of H2O and swish with it every time I ate or drank something other than water. I was also advised to avoid acid foods like tomatoes, any sodas, coffee, tea, spicy foods and pepper. I wasn't eating much, but when I did I tried to eat foods that were more alkaline (watermelon!!!)  and they seemed to agree with me better, too. I don't know if any of these things will help you, but I thought I'd throw them out there for you to consider. I also started taking Pepcid AC to deal with the heartburn that felt more like nausea than a burning sensation, but you'd need to get your Dr.s ok before trying that.

 

Lulu7582

Dec 28, 2018 - 11:35 am

Thank you so much!

Thank you for the information! Appreciate it! 

 

paris11

Dec 30, 2018 - 12:03 pm

Hi Lulu,

Hi Lulu,

everolimus is cutting-edge treatment.  I have been cancer free for 41 months with tamoxifen and megace (which is similar treatment):

Connie

 

Lulu7582

Dec 30, 2018 - 3:28 pm

Thank you

Hi Paris,

Yes I am very happy with this new doctor and the cancer center. It is so hard sometimes to know what is the right treatment and we put so much trust in our doctors. I thought my previous oncologist was good but in hindsight she just didn't have the experience and was staying with the standard of care when she knew my cancer was unusual and aggressive. So on a positive note I feel the everolimus is working to knock the cancer back  because the bone pain and back pain I started to have is now gone. Just hoping I can get the mouth ulcers under control so I can stay on this medication. 

Thank you for replying. 

Lulu 

 

paris11

Jan 01, 2019 - 9:15 am

Lulu,  may I ask what cancer

Lulu,  may I ask what cancer center are you at?  I go to university of Chicago and Sylvester cancer in Miami.

Look Dr. Brian Slomovitz in Miami.  He works closell with Dr. Rob Coleman at MDA.

Connie

 

Lulu7582

Jan 02, 2019 - 1:06 pm

Cancer center

Good morning Connie,

Thanks for asking. I was going to Moffitt in Tampa but due to my husband's job relocation and moving closer to our family I am now seeing a gyn/onc at Davis Cancer Center, however due to dreaded insurance problems I might have to change. My husband's insurance doesn't cover this particular doctor!! Ugh! Just when I thought I had found a good one. 

Health insurance in this country sucks!! Sorry for venting but thanks for asking. Hope you are doing well. 

lulu

 

Armywife

Jan 05, 2019 - 6:06 pm

Mouth ulcers

Lulu, I was given a prescription to take if I got the ulcers - I never did on carbo/taxotere, but I'm trying to remember the name of the med - it came in a box and was two little plastic vials that were to be mixed together and used as a rinse.  It worked miracles for a friend on adriamycin.  Hope you can get some.

 

Lulu7582

Jan 07, 2019 - 12:35 pm

Thank you

Thank you Armywife for the reply. I was given a dexamethasone mouth rinse but they stopped it because the lesions take longer to heal and put me on what they call 'magic mouth wash' which contains lidocaine, mylanta and nystatin. It numbs the mouth and gives me 30 mins of heaven but after that everything comes back full force. It is frustrating...I have 5 lesions right now and none of them getting better, infact I can hardly eat and can't hold a conversation. Time to call doc and let her know. I think they will have to stop it for a bit and let my mouth heal and then restart at a lower dose. I didn't have any problems when I was on Taxol / carbo chemo but apparently 70% of folk get mouth ulcers on everolimus. I have been really trying to tolerate them so I can stay on the full amount but it definitely is affecting my quality of life. xo

 

Lulu7582

Jan 09, 2019 - 12:24 pm

marshmallow pillow

Hi guys,

Just FYI ..had a  lovely pharmacist at the cancer center tell me a trick to help decrease the mouth ulcers. No data/ research to back it up but she has seen it anecdotally. Wrap the pill in a marshmallow pillow so the mouth doesn't come in contact with any of the residue from the pill. Have switched to this technique so we will see. xoxo

 

Tamlen

Jan 09, 2019 - 3:49 pm

Love the pharmacists!

I love the pharmacists at these centers. Mine turned up data that made it a really good idea for me to stop taking curcumin/turmeric during taxol/carbo chemo, just researched it on her own without prompting. And now yours has an interesting solution for you -- I hope it works! Please do report back about it.

 

MAbound

Jan 10, 2019 - 10:25 am

Share?

This is where I sometimes get accused of being negative as an "overthinker". I'm really cautious taking supplements because it's often the benefits that get promoted while the potential adverse side effects get glossed over or are hard to find out about. I really got excoriated on my very first post when I joined this forum bringing up a concern about taking curcumin during chemo. It would be a real service for you to share what you got from your pharmacist because there are still those out there who take this supplement who aren't necessarily aware about this issue. 

 

Tamlen

Jan 10, 2019 - 5:14 pm

Curcumin and taxol

The pharmacist at Dana-Farber identified an herb-drug interaction between curcumin and Taxol (Paclitaxel). Taxol is metabolized by the CYP3A4 enzyme. Curcumin inhibits the 3A4 enzyme, potentially altering the metabolism of Taxol. Since curcumin could interfere with Taxol's effectiveness, she strongly discouraged me from taking it during chemo rather than risking it.

I'd shown my chemo nurse a list of supplements a naturopathic onc had suggested to support me during chemo and fight the good fight, and she said she thought it would be a good idea for the pharmacist to review it. Glad I asked!

 

Soup52

Jan 10, 2019 - 12:56 pm

I agree MA. I would be very

I agree MA. I would be very cautious about supplements.

 

derMaus

Jan 10, 2019 - 7:19 pm

I take a number of well

I take a number of well-researched supplements which my onc endorses, but I always stopped them during chemo and radiation (except probiotics). My radiation onc, especially, didn't want me taking any antioxidants lest they interfere with the activity of the treatment. 

Lulu7582

Good news regarding these simple remedies.

Ok for those of you who may have to take everolimus please remember these small tips.  I have found putting the pill in a marshmellow pillow prior to swallowing and also taking a dexamethasone mouth rinse (10mls) four times a day has prevented any mouth ulcers....hooray! Last cycle was miserable with large ulcers that prevented me from eating solid food and even trying to talk. It was just miserable however with these two simple remedies I don't have any mouth ulcers this second cycle. (I went off the med and within a couple of days all the ulcers healed up).

If you check out the SWISH trial it documents the positive results of using the dexamethasone mouth rinse to prevent mouth ulcers when on everolimus. It improves quality of life and yet seems to be overlooked by our docs. So we have to be an advocate for ourselves!!  xo

BluebirdOne

Lulu7582 said:

Good news regarding these simple remedies.

Ok for those of you who may have to take everolimus please remember these small tips.  I have found putting the pill in a marshmellow pillow prior to swallowing and also taking a dexamethasone mouth rinse (10mls) four times a day has prevented any mouth ulcers....hooray! Last cycle was miserable with large ulcers that prevented me from eating solid food and even trying to talk. It was just miserable however with these two simple remedies I don't have any mouth ulcers this second cycle. (I went off the med and within a couple of days all the ulcers healed up).

If you check out the SWISH trial it documents the positive results of using the dexamethasone mouth rinse to prevent mouth ulcers when on everolimus. It improves quality of life and yet seems to be overlooked by our docs. So we have to be an advocate for ourselves!!  xo

this is why this website is invaluable.

Thankyou Lulu for the info. Why is it the medical team gets most of the big things right, like surgery, but don’t either know how these agonizing side effects can be ameliorated or they don’t care? Same for the cold packs hands and feet to help with potential life long neuropathy? 

 

Denise