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Hi everyone, sorry it took so long for me to respond, I just got home Tues. night from Houston from my quarterlies, had to rest up a little as it always takes a lot out of me.
Thx for all the responses.
My mri brain scans came out clear again as well as as my ct scans. I spoke with the doctors PA as my doc was not in clinic. She said she was surprised he stopped treatment as well. She said she asked him for me about reducing my dosage again to 2×2 or extending the time between scans and he said that taking 2×2 hadn’t shown to be effective at all and would be the same as not taking it at all. He said there is just not enough data to know what to do. I am the only patient he knows about that has been on z for this long and my body has not built up a resistance to it nor has the disease found its way around it. So he said I have responded so well that we will try it with out the z. If it comes back then we will go back on the zel/mek combo, I think thats what she said. Since I have not built up a resistance to the z then likely it will work again.
Dick has been on longer than me though but that is the only one I have read about. He is a warrior and my hero. I too had the iL2 in the very beginning along with interferon and 3 chemo drugs at the same time called ‘biochemo’ but developed pulmonary edema , fluid in the lungs, and they gave me a dose of Lasix, a strong diuretic, and my bp dropped to 60! I was able to continue after a couple of days with the biochemo but with the iL2 greatly reduced. I then had 6 sessions of chemo therapy. I then got into the trial for zel. and been on it continually till now. I took two 5 day breaks for the brain surgeries but no others.
I am still amazed every day because in the beginning I had at least 4 tumors in my lungs ranging from 1.5 to 2.5 cm, 2 on my liver, 1.4 cm & 3.3 cm, 1 in my pelvis 3.9 cm and developed 4 tumors in my brain over the next year and 1/2. They are literally all gone! Why me? I don’t know, could it be the iL2, the chemo, the zel. or a combo, who knows. I am still scared it’s going to come back but I have been scared of that even on zel. so I am feeling a little better now. I just hope they can figure out soon what works for some and how it can work for all.
Wait and see, wait and see! My thoughts and prayers are with you all and we just have to have faith.
Catherine, I read your posts to Kat re: stage IV ned. What is your opinion about what my dr. said about the zelboraf. I wasn’t having any more problems than previously as far as side effects.
Not sure I like this watch and wait stuff either. I am of course braf pos. Seems if the zel. was working then why stop.
Any stats on how long others have stayed ned after quiting the treatment?
Thanks, just a little scared tonight.
Hi Tammie, glad to hear your husband is doing well. My doctor was hard to convince reducing the dose down to 3 x 2 and said that less than that had shown to be not as effective so he wouldn’t go down to 2 x 2.
As I said, I was so surprised today when he said I could quit the treatment altogether, I couldn’t think about questions I have. And this has nothing to do with the side effects as I have had those all along and they have not gotten worse. I will be talking to him further in the next few days.
He basically told me that the trial for zelboraf had been for 2 yrs and their research had shown that if I continue taking it my body will develop a resistance to it and they don’t want that to happen. Keep in mind that I have been taking it for 3 years, 8 pills a day until a few months ago when he reduced it down to 6 per day and I have been basically ned for 20 months. I am very blessed.
So he said to stop taking them altogether and I will do 2 more quarterly scans unless something comes up before that, then I can just get checked close to home after the next 6 months is clear. It didn’t seem like it was a ‘break’. I go to MD Anderson I Houston and I live about 4 hours away. Still have my mri on my brain tomorrow but not worried about that too much. I will write more when I learn more. Good luck to your husband.
Skeeter, I have been on zelboraf for 3 yrs, I have not had those side effects from the meds.
Not to scare you tho, I did have some problems with my coordination, not being able to type, petting the sink faucet instead of the cat! It was a brain met near my motor strip. My wonderful neurosurgeon, removed the met successfully and have had no problem with motor skills since. That was 2 of 3 total brain mets we had to deal with, none for 20 mos.
Please let us know how he is doing and yes, take the advice of the others.
Endure and all, so glad to hear of all the success you all have had. I have been on Zelboraf for almost 3 yrs, trying to keep up with Dick! Ha ha. Anyway, as of today, clean scans for 20 mos! Can’t hardly believe it as I was also given the “get your affairs in order speech” almost 4 years ago.
I got some news today but want to post in diff. forum for a broader source of info.
As far as side effects, joint pain- extreme – traveling – each lasting about 2 days each joint. Most severe in feet, ankles, wrists. Some days feel like my ankle/foot is broken, balls of my feet hurt a lot and my shoe size has increased too. Only thing that works for me is Excedrerine. I haven’t been able to work since the beginning as I don’t know if I can walk ea. day, also diarrhea has been bad but have that controlled now too. Have not had any more squamous cell lesions in about a yr, knock on wood. I think the joint pain is worse due to more physical activity but the fatigue still continues im sorry to say.
The constant stress of not knowing if it will come back or not is crazy, just remember we are all warriors and so much stronger than we think. You are all heros!May 31, 2013 at 4:10 am in reply to: Indolent melanoma – re Frank’s ? on How long stage 4 #60983
I agree as well, I hate this disease but am fascinated with what works for some and not others.
I am one of those that had 35 yrs between my 1st melanoma and stage IV, will be 3 yrs in Aug. since dx stage IV and have been NED for 9 mos.
I would gladly let them study my immune system or what ever they wanted to study if it could lead to a cure or even better treatments!
dallyup4May 30, 2013 at 5:34 pm in reply to: How long have you been Stage IV? How old are you? More ?s #59775
In respose to buffcody, that is extremely interesting. The 1st melanoma was definitely a mole and in 1975 they were just becoming aware of the horrors of skin cancer. 34 yrs later, I was having shortness of breath and went thru every test they could think of short of ct scan or pet scan do to my shortness of funds. They found absolutely nothing wrong. That was in 12/2009 Extremely stressful time in my life and 6 mos later found a knot behind my right knee, no mole or any other visible sign. They removed it and already stage IV. This was on the same leg as the mole. They never did decide if it was a reoccurrence or new. I think it was sitting there the whole time. They removed the lymph nodes in my groin way back then because at that time they thought it only traveled through the lymphatic system and not the blood. In fact, for several yrs after that they allowed me to donate blood! I can’t remember how many but how scary is that, I may have contaminated someone else!!
All that time in between I had regular checkups at the dermatologist and I was cautious but I still was out in the sun a lot.
Makes me wonder about early detection methods. I wish insurances would pay for yearly pet scans, think how many lives could be spared let alone the money they would save!
Athough this has been a very hard journey, it just fascinates me how it develops and the research and treatments. Thx for sharing all your experiences.
Thx for sharing Steven. I decided to do the biochemo therapy in the beginning, I had seven small nodes in my lungs, 2 on my liver and one in my pelvis/groin. The treatment consisted of 2 immunotherapy drugs, IL2 being one of those and 3 chemo drugs all given at the same time. I was to be in the hospital for the treatments so I felt a little more comfortable with it.
The 1st treatment went ok but the second not so good, my blood pressure dropped to like 60/40 and they almost lost me. I had gone thru all the tests and seemed to be in perfect shape for this but I guess not. They decided I couldn’t handle it and started me on regular chemo.
I was very disappointed as I thought the IL2 was the best treatment at the time, this was 9/2010.
After 6 rounds of chemo the nodes had shrunk a little but I had gotten some brain mets, took care of those with gamma knife and 2 surgeries. Got into the Zelboraf trial and just pasted my 24 mo mark on Z and 9 mos NED.
I have often wondered why the Z is working so well for me and not others and I have often thought that it may just have been that initial jolt of IL2, even though I didn’t receive very much of it.
I was 55 at the time of that and in good health other than the melanoma.
Good luck to you, Susan dallyup4
Thx Karen and Jmmm for your replies. I have had those terrible side effects from the beginning but my dr. refused to reduce the dose, he was so afraid my tumors would come back.
The joint pain is probably the worst thing, although the longer it goes on the more I think it’s more like the tendons that hurt. Sometimes I have pain where there is no joint, like the arch of my foot or the middle of my shin but it only lasts for 2 days then moves somewhere else. My knuckles on my hands get so swolen and red and sore, I can’t even hold anything in my hand. My last visit the nurse asked me what the pain level was and I said 10+! Maybe that did it, he finally reduced it.
The sun sensitivity is very real, I am an outdoor person and that has been hard to deal with. I have diarrhea a lot as well and fatigue and hair loss.
I’m glad to know that the reduction in dose is working fine for you both.
Thx again, Susan
Hi Maria, I have had 4 brain mets within about 2 yrs time, first was taken care of with Gamma Knife, a little pain getting the head gear on but only 15 min of treatment and it was gone. About 6 mos. later I got two more, treated with Gamma Knife again, took care of one but 5 mos. later the other started getting a little bigger and it was very close to my motor strip, I was having symptoms with my right side not working properly, scary, so they did a craniotomy and got all of it out, thanks to my brilliant (female) neurosurgeon! Another yr goes by and yet another brain met, craniotomy again and got all. August will be another yr but I am confident there will be no more.
BTW, the craniotomys were a piece of cake for me. Easiest surgery I have ever had, practically pain free, in on Mon. morning and out by noon on Wed. both times. Steroids for 5 days, which made me feel great, and then back to my life. I didn’t even loose my hair cuz she did ‘hair sparing’ surgery, no one could tell.
That is my experience, I don’t know how others have faired.
Have confidence, the power of positive thinking is a great thing. Good luck to you. BTW, I am now 58 yrs old.
That is fantastic news!!! I’m so happy to hear that, I have been on Zelboraf for 24 mos. now and NED for 9 mos. I am so excited to hear of others with this success. Thx for sharing.May 28, 2013 at 3:41 pm in reply to: How long have you been Stage IV? How old are you? More ?s #59772 When 1st diagnosed: 1975, mole on front of right ankle. Removed surgically, 5 layers, huge hole. Lymph nodes removed in right groin. Said they got it all, no treatment. No mention of stage back then.
How much time passed before diagnosed with stage IV: 35 years! 8/2010, knot behind right knee, removed surgically and was malignant mel. Pet scan revealed at least 7 mets in lungs, 2 on liver and 1 in right groin.
Treatment: biochemotherapy w/ IL2+, bad reaction, almost died. Went to reg. Chemo, 6 treatments. Mri revealed 2 brain mets, gammaknife, nodes removed in right pelvis area, another brain met, gammaknife again, didn’t work, craniotomy, started Zelboraf 5/2011, all tumors shrinking, another brain met tho, 8/2012, another craniotomy, continue Zelboraf. 9/2012 scans show NED!
2 yrs on Zelboraf and 9 mos. NED, My Dr. finally reduced my dose from 8 per/ to 6 per/day, hoping for reduction in side effects and continued NED.
I am 58 and my name is Susan
Good luck to you and please remember ATTITUDE IS EVERYTHING! I know it sounds hokey but that and prayer are key. Don’t ever give up!August 16, 2012 at 8:40 pm in reply to: update: Zelboraf still working, surgery successful #55836
Just a thought, I do a lot of that lately, I read that article about HGF and then did a quick search on what causes HGF deficiences. If I understand it right, one of the reasons for our HGF level to be low is aging. Maybe that is part of the reason the Zel is working so well for us. I am 57 so I am thinking that my levels are probably a lot lower than say a 30 yr old.
I am excited about them researching this more. I am just fascinated with all the developments of late for Melanoma and other cancers. I hope to see some new trials come out about this. Anyway, just thought that was interesting.
Thanks for your replies. I guess I will contnue on full dose. As with you, it is not debilitating but there have been times I couldn’t walk because of my ankle hurting so badly, mostly it is in my hands and fingers , very painful at times but I can live w/it. I guess my main reason for wanting a reduced dose is so I can feel myself again, some sort of normality. I’m sure we all get tired of fighting this thing every day. At least it is working for us and I am very thankful for that.
Dick, I am so confused, I thought the trials all ended when Zelboraf went on the market last Aug/Sept, at least that’s what they told me. ” FDA approval, now you have to pay for it” They set me up w/Biologics, a mail order pharmacy. They mail me a mos. worth and then bill the insurance and me. Once a yr I have to have a prescription sent in. I guess my poor husband will have to keep working for awhile so we can keep the ins. Makes me feel so guilty.
That’s a tuff one, I am no expert on Ipi as I have not had the pleasure of having to use it yet. I have been on Zelboraf for about 14 mos. and it is still working well for me although the side effects, for me, have been hard to deal with but what’s the alternative? I just had a scare a couple of wks ago when I went in for my 3 mo scans and they found a brain met that had been previously treated with gamma knife, had started to grow, so I had brain surgery for the second time in a yr and they got it all out, but at the same time I found a lump in my breast and my Dr. was worried it was a new Melanoma. He said if it was I could not continue on the Zelboraf, it couldn’t be justified. Now if I had just had the brain met and no new lesions anywhere else, I would be allowed to continue! Wierd, anyway, mammo, ultrasound, and it was definetly not cancerous. Yea for me. So, I am able to continue on the Zelboraf until it stops working. By the way, I did biochemo, w/IL2 in the beginning and had a bad almost fatal reaction to it, then went to just chemo for 6 mos and then Zel, all my lesions are gone or inactive. So, don’t know what did it but I’m still here. Don’t give up hope, attitude is everything.
One thing I am curious about is, people keep talking about re-induction to Ipi. Does that mean it stops working and you get to try it again? What reaction did she have from it? I like you am planning on sticking around until they come up with a cure! Hopefully soon and maybe it will be PD-1. Good luck and let me know what happens. You are in my prayers.