MEK/Pazopanib
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No prob!
Also, most insurance covers wigs, usually one go round with a pretty high cap, for cancer patients at specific locations. It’s worth a try. I got a beautiful human hair wig in that way.
~Regina
Regina,
Ignore my question above. I just realized you’re in the MEK/Pazopanib clinical trial. Sorry chemo brain!
Peace,
MaryThanks for the clarification Regina. Are you on cabo as part of a clinical trial or just as a chemo med? I’ll have to ask my doctor if that would be something worthwhile for me if/when the Paclitaxel stops working. Thanks for the info.
Ladies, Regarding wigs…the American cancer society gives them to you for free. They also give head coverings. You can call the ACS 800 number, or go online to find an office by you. I had to call the one by me for an appt. They were really nice. I got two head coverings – didn’t want to go the wig route but she kept asking me if I was sure I didn’t want a wig. I don’t know what the limit is on how many wigs you can get.
Peace,
MarySpeaking of wigs girls, I was loosing hair from a med I was trying for my UC, so I went to MDA here in Phoenix as they all have gift shops with VERY reasonable prices and usually when you mention you have cancer you even get a discount. I got the cutest wig for $60 and the match to my hair is incredible as I have natural platinum looking white, thanks Mom. I love wearing it except in the summer here its way too hot, so now I can start wearing it again. But Cancer gift shops is the way to start. Once you try them on you will love them. Hey, Kris you saw mine. Yikes I should not ask you to be honest as you will! Still love you, my cookie. In case you didn’t know Kris drove from PHL to Milwaukee to spend a few days with me at a Lake T and I used to go to every summer. It stormed daily, there was no Karaoke but we had a good time. Lots of crying and lots of laughing. I miss you!
Kris~
hah! Yeah, well, I’ll wear a seat belt on the way to the beach, but I’m not too worried about the sunscreen. (Except, I can’t really use that anymore since the sun brings out the acne!) Ultimately, it’s all about vanity.
I agree, your scalp issue should really be only one or the other. definitely protest. Although, once you’re wearing a wig, what’s the difference what you’re covering up? Have you tried that route? I would love to write a story about my wig adventures. I have gotten used to switching hairstyles and color on a regular basis. The trouble is that I try to stay consistent with professional crowds, and I blew it last time — showed up as a redhead where once I had been blonde — and no one recognized me. It may have been a good thing because my brain was full of cotton balls and I had nothing much to contribute. I’ll have to keep the blonde, ironically, for when I intend to be taken seriously.
Cheers~
ReginaMary~
Just a quick response now since I have to dash~ sorry to hammer the point, but what I was saying about the cabo is that you don’t have to be on a trial at all. Your doc can prescribe it for you like any other medication. Being on a Phase 1 trial is a pain in the neck with all the excess testing and reporting — only worth it if it’s your only option. Cabozantinib can be prescribed like a regular medicine and paid for by insurance by your doc and you’re on your merry way.have a great day~
ReginaNot sure why the rest of my post is missing. It was a very long post but only half of it posted.
If can’t remember all of it bit two important items…
Regina, regarding your sense of humor – I love it having my own Irish black humor! Humor has gotten me through a lot of heartache in my life.
Kris, in regards to the acne head and hair thinning…I started using a shampoo and conditioner called Nioxin. It’s a hair thinning shampoo but my daughter read it was good for acne/ sores on the scalp. I decided to try it since I was having issues with scalp sores after my Paclitaxel treatments. I don’t know if it’s a coincidence or not but my hair started growing back. I don’t know if you remember, but when you met me I had lost a lot of my hair. I lost a lot more after that and I swear my hair is growing back since using this shampoo. I bought it in a store called Ulta. Not sure if it’s in your area. It’s also online but my daughter read it wasn’t good to buy online. Sorry chemo brain so I can’t remember the reasoning behind that. If you want to try it, and have trouble finding it in your area,I can certainly buy it and mail it to you.
There was more on my post that wasn’t posted above but that’s all I can remember.
Be well ladies, stay strong!!! Once again thank you for sharing your stories regarding your clinical trials. I hope to see many more good news posts from the both of you!!!
Take care,
MaryHi Regina,
Yes I understood what you were saying. That would be nice if Sloan would pay for my genetic testing if my insurance wouldn’t. That was the one thing my doctor mentioned about the possibility of my insurance not paying. She didn’t see the clinical trial as a problem regarding payment from my insurance. As you mentioned, and so did my doctor, that sometimes if you get in a clinical trial they may want to do the gene testing and therefore might pay for it. That would be great!!!
There are always some side effects to all drugs, but why do we have to endure acne at our age!!!
Regina, you are cracking me up!! I also can get morbid. My favorite, when I know I’m eating something bad is “what’s it gonna do? Kill me?” Or “if it’s gonna give me cancer, too late! Already got that!” And as far as dating, I say if they want a long term relationship I’m a bad bet.
Seriously, tho, I believe CA19-9 falling represents less activity. Meaning shrinkage or stabilization.
Most of my “eruptions” are at the hairline or in the scalp. I do get occasional wanderers on my face. But it’s not too bad, so I guess I’m lucky. Mostly I can cover up with concealer. But with my hair falling out, I’m worrying about going bald. So I had a little talk with God the other day. Just to clear the air. I said I would totally rock the baldness if it came to that, but not with acne head. So he either has to let me keep my hair or he has to stop with this acne-like head! I’m hoping he listens!! lol
So far, I’m getting thinning hair. I’m hoping it stops at that. The trouble is, these drugs are so new no one really knows long term side effects. Unfortunately, the acne like eruptions seem to be fairly common, according to my onc.
But I like the theory that we are responding better! And I can say I am: 4mm shrinkage is not bad!! I will celebrate that, since I’m supposed to be holding steady on this drug!
Oh, and I live outside of Philadelphia, PA. But I could probably be talked into a day in NYC. I’ve never seen the tree lit up!Hi Marion~
My onc told me about that interesting phenomenon with Erbitux; and I queried her as to whether it applied to MEK/Pazopanib, too, but she said it wasn’t yet known. I guess Kris and I will be among the numbers to inform future queriers.
Thank you for the interesting information you did provide. I appreciate having some information to wrap my head around. In fact, it stands to reason (maybe) that if the drugs are disrupting cell growth signaling such as to have a visible effect after only two weeks, it is possible that my already lowered CA19-9 could represent actual tumor growth remission.
One might as well entertain the possibility, anyway.
Hugs to you,
~ReginaThanks, Lainy~
You keep me smiling, too. The best defense is laughter! Glad to know you’re up for some gallows humor, because I have been holding back on this platform, feeling out the waters with one (oxali-numbed) toe at a time.
keep having fun!
~ReginaRegina….A recent study of Cetuximab (Erbitux) showed that those patients who developed an acne-like rash responded better to the treatment than those who did not. Eributux, a monoclonal antibody disrupts the epidermal growth factor EGFR which is found on the surface of some cells. Basically, Erbitux interferes with the growth of the cells by attaching to it.
Other EFGR inhibitors also cause an acne-like rash however, as far as I know, we don’t have any answers as to why this is happening.
In this case, I like to believe that your acne and that of Kris is related to a positive response of the treatments. Studies will have to prove it however; I stick to my very own reasoning.
Hugs,
MarionOMG, Regina, sorry to intrude but you just cracked me up! Now I can go to bed with a smile because of your wonderful sense of humor! Glad to see there is another “nut” on here beside me! I do hope you and Kris can get together. She is a nut too! All good ones.
HI Kris~
Yes, we must meet up soon. DId you tell me you are in NY, as I am? I can’t remember which platform we used to communicate previously.
How’s your face these days? Mine is approaching monstrous, frankly. The trial nurse said I could start an oral antibiotic for the long term, but I’m a bit nervous about dilapidating my natural flora, affecting digestion, immune system, etc.
Why do these inhibitors cause acne??? I was hoping that if I was going to die young, at least I would die beautiful!
Sigh.
best to you!
ReginaHi Mary~
Just to make sure you understood: My insurance agreed to cover cabozantinib OFF-trial. That means you would use it with only the supervision of your onc, without all the restrictions and requirements of a trial, including the four week clearance time.
Also, I had my genetic analysis done at Foundation Medicine, and I don’t think they wound up charging me much at al, if anything. They want patients now more than they want the revenue from them. Also, MDAnderson, for example, would do it as part of their protocol, hassle-free. Some of the big medical centers have their own genetic labs that can check for all the mutations.
Out of 236 genes tested, I only had a mutation on IDH2. There is as yet not enough information as to what to do this information, in most cases, but it’s coming along.
Be well!
~Regina
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