› Forums › General Melanoma Community › Finally headed in the right direction…started Z
- This topic has 18 replies, 6 voices, and was last updated 11 years, 6 months ago by
KMT2003.
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- October 25, 2012 at 8:10 pm
August 23rd I went for scans and found that I had new areas of concern in my bones in the lumbar area of my back. We started doing many biopsies which kept coming back inconclusive for melanoma. In the meantime, I noticed a lump in my breast that concerned me as well. I had a set back with getting that tested at first too but it did finally come back as melanoma in October… We were discussing Z or trials combining Z with other drugs and doing scans when things kept getting worse for me.August 23rd I went for scans and found that I had new areas of concern in my bones in the lumbar area of my back. We started doing many biopsies which kept coming back inconclusive for melanoma. In the meantime, I noticed a lump in my breast that concerned me as well. I had a set back with getting that tested at first too but it did finally come back as melanoma in October… We were discussing Z or trials combining Z with other drugs and doing scans when things kept getting worse for me. I had been dealing with back pain for several months and not being able to do normal things like getting dressed, walking without pain etc. October 16th I was admitted to the hospital after doing on ultrasound for a very swollen and painful leg. I had a blood clot… My doctor was also a little concerned that I could have had a clot in my lungs too because I couldn’t talk in complete sentences. However, we did not find any after doing tests so that was great news. I had just gotten my first shipment of Z in the mail that day so we took it to Tampa with us. Our goal for me to be discharged was to get the pain under control from the tumors and my calcium levels in my blood were too high… I was there for about 5 days. My doctor and I decided it was best to skip the trials and start the Z right away. I have been taking it now for about 8 days and am feeling much better than I have in the past few months… No side effects yet but I am wondering when and if they will start??? I am having to still rest my leg due the the clot. I am taking fragmin injections every night before bed plus a variety of other pills along with daily blood work to keep an eye on my calcium levels. I am just glad that am starting to feel better after a long frustrating few months. I hope to be on the road to recovery and share my success with anyone else fighting this nasty beast. Stay positive and aggressive with the doctors! If my husband wasn’t as aggressive these last few months I feel we would still be dealing with speed bumps instead of treating this…
Kelly
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- October 25, 2012 at 9:53 pm
Sorry you have had it so tough. I can only speak for myself but I had pins and needles feelings in my hands starting only hours after the first dose and I struggled the entire time with managing one thing after another. Maybe you are one of the lucky ones! I hope so! -
- October 25, 2012 at 9:53 pm
Sorry you have had it so tough. I can only speak for myself but I had pins and needles feelings in my hands starting only hours after the first dose and I struggled the entire time with managing one thing after another. Maybe you are one of the lucky ones! I hope so! -
- October 25, 2012 at 9:53 pm
Sorry you have had it so tough. I can only speak for myself but I had pins and needles feelings in my hands starting only hours after the first dose and I struggled the entire time with managing one thing after another. Maybe you are one of the lucky ones! I hope so! -
- October 26, 2012 at 12:35 am
Prayers sent your way that "Z" works for you with minimal side effects.For me and so many more it is a kick ass drug to melanoma.Keep us posted.Your extended family.Beat the Beast. Al
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- October 26, 2012 at 12:35 am
Prayers sent your way that "Z" works for you with minimal side effects.For me and so many more it is a kick ass drug to melanoma.Keep us posted.Your extended family.Beat the Beast. Al
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- October 26, 2012 at 12:35 am
Prayers sent your way that "Z" works for you with minimal side effects.For me and so many more it is a kick ass drug to melanoma.Keep us posted.Your extended family.Beat the Beast. Al
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- October 26, 2012 at 3:26 am
Kelly,
It is good to see you posting again and wonderful to read that you are starting to feel better. It was so nice to be able to meet you, your identical twin and your husband.
One day at a time and keep in touch. I'm here if there is anything at all that I can do for you. Hang onto hope.
Stay Strong
King/KathieStage IV 7/05 Liver mets
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- October 26, 2012 at 3:26 am
Kelly,
It is good to see you posting again and wonderful to read that you are starting to feel better. It was so nice to be able to meet you, your identical twin and your husband.
One day at a time and keep in touch. I'm here if there is anything at all that I can do for you. Hang onto hope.
Stay Strong
King/KathieStage IV 7/05 Liver mets
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- October 26, 2012 at 3:26 am
Kelly,
It is good to see you posting again and wonderful to read that you are starting to feel better. It was so nice to be able to meet you, your identical twin and your husband.
One day at a time and keep in touch. I'm here if there is anything at all that I can do for you. Hang onto hope.
Stay Strong
King/KathieStage IV 7/05 Liver mets
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- October 26, 2012 at 12:47 pm
Kelly
(I posted this reply on another thread but I’m reposting here in case it is a benefit to someone else following this thread.)
Sorry to read of your troubles but I hope you start to get the good Zelboraf benefits quickly and the side effects are minimal. For me, I started with rash and sun sensitivity within two weeks. At about five weeks I had, body hair loss, joint pain (preexisting arthritis?), neuropathy in both feet, and warts on skin. At about five months the feet were very painful and at nine months, one of the warts turned out to be a squamous-cell carcinoma. Overall, with the exception of a two month period where walking was painful and the continued sun sensitivity, the side effects have been very tolerable. Of course the worst side effect for me now is the bilirubin increase that I hope will go away with dosage reduction. Hope this helps and again, good luck.
Dick
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- October 26, 2012 at 12:47 pm
Kelly
(I posted this reply on another thread but I’m reposting here in case it is a benefit to someone else following this thread.)
Sorry to read of your troubles but I hope you start to get the good Zelboraf benefits quickly and the side effects are minimal. For me, I started with rash and sun sensitivity within two weeks. At about five weeks I had, body hair loss, joint pain (preexisting arthritis?), neuropathy in both feet, and warts on skin. At about five months the feet were very painful and at nine months, one of the warts turned out to be a squamous-cell carcinoma. Overall, with the exception of a two month period where walking was painful and the continued sun sensitivity, the side effects have been very tolerable. Of course the worst side effect for me now is the bilirubin increase that I hope will go away with dosage reduction. Hope this helps and again, good luck.
Dick
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- October 26, 2012 at 12:47 pm
Kelly
(I posted this reply on another thread but I’m reposting here in case it is a benefit to someone else following this thread.)
Sorry to read of your troubles but I hope you start to get the good Zelboraf benefits quickly and the side effects are minimal. For me, I started with rash and sun sensitivity within two weeks. At about five weeks I had, body hair loss, joint pain (preexisting arthritis?), neuropathy in both feet, and warts on skin. At about five months the feet were very painful and at nine months, one of the warts turned out to be a squamous-cell carcinoma. Overall, with the exception of a two month period where walking was painful and the continued sun sensitivity, the side effects have been very tolerable. Of course the worst side effect for me now is the bilirubin increase that I hope will go away with dosage reduction. Hope this helps and again, good luck.
Dick
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- October 29, 2012 at 11:33 pm
YEYYY on starting the "Z"!!! I hope you have a great response as my husband is having and many others so far. My husband has been on for 5 mos with VERY minimal side effects. He had extreme sun sensitivity the first few wks, resulted in HORRIBLE blisters on his shins and one day he woke up with a swollen face and eyes almost swollen shut!! That seems to have settled down (although we still take precaution), just some body hair loss, hair on head was lost due to radiation, but slowly but surely coming back. He has gotten some skin tags, moles, etc…. some went away and I made an appt for him next week to have a few others checked out. So for now he is feeling great! Best of luck to you against this beast!
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- November 9, 2012 at 2:34 am
I am actually dealing with a swollen face right now… How long did your husband’s face swell for? What did he do if anything to make it go away? I was trying to taper out my steroids but now with my swollen face I am back to the normal steroid dose. I haven’t seem to have really any other major side effects yet. I did have a few headaches and a small rash on my chest but it is already going away. Has your husband had to take any breaks from the Z?? Thanks for any of your input.Kelly
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- November 9, 2012 at 2:34 am
I am actually dealing with a swollen face right now… How long did your husband’s face swell for? What did he do if anything to make it go away? I was trying to taper out my steroids but now with my swollen face I am back to the normal steroid dose. I haven’t seem to have really any other major side effects yet. I did have a few headaches and a small rash on my chest but it is already going away. Has your husband had to take any breaks from the Z?? Thanks for any of your input.Kelly
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- November 9, 2012 at 2:34 am
I am actually dealing with a swollen face right now… How long did your husband’s face swell for? What did he do if anything to make it go away? I was trying to taper out my steroids but now with my swollen face I am back to the normal steroid dose. I haven’t seem to have really any other major side effects yet. I did have a few headaches and a small rash on my chest but it is already going away. Has your husband had to take any breaks from the Z?? Thanks for any of your input.Kelly
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- October 29, 2012 at 11:33 pm
YEYYY on starting the "Z"!!! I hope you have a great response as my husband is having and many others so far. My husband has been on for 5 mos with VERY minimal side effects. He had extreme sun sensitivity the first few wks, resulted in HORRIBLE blisters on his shins and one day he woke up with a swollen face and eyes almost swollen shut!! That seems to have settled down (although we still take precaution), just some body hair loss, hair on head was lost due to radiation, but slowly but surely coming back. He has gotten some skin tags, moles, etc…. some went away and I made an appt for him next week to have a few others checked out. So for now he is feeling great! Best of luck to you against this beast!
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- October 29, 2012 at 11:33 pm
YEYYY on starting the "Z"!!! I hope you have a great response as my husband is having and many others so far. My husband has been on for 5 mos with VERY minimal side effects. He had extreme sun sensitivity the first few wks, resulted in HORRIBLE blisters on his shins and one day he woke up with a swollen face and eyes almost swollen shut!! That seems to have settled down (although we still take precaution), just some body hair loss, hair on head was lost due to radiation, but slowly but surely coming back. He has gotten some skin tags, moles, etc…. some went away and I made an appt for him next week to have a few others checked out. So for now he is feeling great! Best of luck to you against this beast!
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