@kate_perth
Forum Replies Created
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- May 17, 2014 at 1:16 pm
Hi worried…
stop. Breathe.
Many people have irregular looking moles that are nothing to worry about. Obviously get the one your doctor has identified checked out and see someone about the bloody stool issue.
But most importantly, go see a professional about your anxiety issues – these seem by far the most worrying of all the things you mentioned!
x
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- May 17, 2014 at 1:16 pm
Hi worried…
stop. Breathe.
Many people have irregular looking moles that are nothing to worry about. Obviously get the one your doctor has identified checked out and see someone about the bloody stool issue.
But most importantly, go see a professional about your anxiety issues – these seem by far the most worrying of all the things you mentioned!
x
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- May 17, 2014 at 1:16 pm
Hi worried…
stop. Breathe.
Many people have irregular looking moles that are nothing to worry about. Obviously get the one your doctor has identified checked out and see someone about the bloody stool issue.
But most importantly, go see a professional about your anxiety issues – these seem by far the most worrying of all the things you mentioned!
x
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- April 22, 2014 at 10:18 am
This was one of my first thoughts when I was diagnosed too… I was 30 when diagnosed, stage 4 at 31 and now looking forward to my 33rd birthday in October. Now it's had some time to sink in (I'm stage 4 – liver, lung, bone, distant lymph nodes), I fully intend to see retirement! So far I've outlived 3 nasty prognoses so I've stopped listening to them. Honestly, the research for melanoma is amazing and you'll be surprised how many people are living their lives with stage 4. My advice is see a specialist, always know the next step in treatment and keep the stress to a minimum! Exercise is great.. I only walk but it gives me time to reflect and ensure my body is still working the way I need to live life. Eating healthily makes me feel a little more in control ( I mean just healthy, not cut out everything you love and load up on weird supplements!)
im on the braf/mek combo and have seen great results so far, with some uncomfortable fevers and chills at the start but all cleared up now. I work full time (granted around my medical appointments) and do all the things I always did.
dont google! Most of the information is outdated…
Might be a bit early for this advice but it's the best thing anyone has said to me…
You can be terrified you're going to die, but if you live another 20 years you'll have wasted all that time worrying rather than living!
Xxxx
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- April 22, 2014 at 10:18 am
This was one of my first thoughts when I was diagnosed too… I was 30 when diagnosed, stage 4 at 31 and now looking forward to my 33rd birthday in October. Now it's had some time to sink in (I'm stage 4 – liver, lung, bone, distant lymph nodes), I fully intend to see retirement! So far I've outlived 3 nasty prognoses so I've stopped listening to them. Honestly, the research for melanoma is amazing and you'll be surprised how many people are living their lives with stage 4. My advice is see a specialist, always know the next step in treatment and keep the stress to a minimum! Exercise is great.. I only walk but it gives me time to reflect and ensure my body is still working the way I need to live life. Eating healthily makes me feel a little more in control ( I mean just healthy, not cut out everything you love and load up on weird supplements!)
im on the braf/mek combo and have seen great results so far, with some uncomfortable fevers and chills at the start but all cleared up now. I work full time (granted around my medical appointments) and do all the things I always did.
dont google! Most of the information is outdated…
Might be a bit early for this advice but it's the best thing anyone has said to me…
You can be terrified you're going to die, but if you live another 20 years you'll have wasted all that time worrying rather than living!
Xxxx
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- April 22, 2014 at 10:18 am
This was one of my first thoughts when I was diagnosed too… I was 30 when diagnosed, stage 4 at 31 and now looking forward to my 33rd birthday in October. Now it's had some time to sink in (I'm stage 4 – liver, lung, bone, distant lymph nodes), I fully intend to see retirement! So far I've outlived 3 nasty prognoses so I've stopped listening to them. Honestly, the research for melanoma is amazing and you'll be surprised how many people are living their lives with stage 4. My advice is see a specialist, always know the next step in treatment and keep the stress to a minimum! Exercise is great.. I only walk but it gives me time to reflect and ensure my body is still working the way I need to live life. Eating healthily makes me feel a little more in control ( I mean just healthy, not cut out everything you love and load up on weird supplements!)
im on the braf/mek combo and have seen great results so far, with some uncomfortable fevers and chills at the start but all cleared up now. I work full time (granted around my medical appointments) and do all the things I always did.
dont google! Most of the information is outdated…
Might be a bit early for this advice but it's the best thing anyone has said to me…
You can be terrified you're going to die, but if you live another 20 years you'll have wasted all that time worrying rather than living!
Xxxx
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- April 19, 2014 at 8:22 am
I've had my 8 and 16 week scans and both have shown pretty drastic improvements… Particularly with my liver, which was the real worry as it was progressing and multiplying really fast before I started braf/mek. I haven't had any new tumours and all the existing ones are either shrinking or stable… The very scary one in my liver had halved in size by four weeks. And my LDH levels are almost normal now… They had been about 400 at one time which I think is 3-4 x the normal level…
The lovely thing about these drugs is I only have to see the doctor every 4 weeks which is a real blessing when you work full time! Though my bosses have just been the most amazing and understanding people ever the whole time!
ill keep an eye out in the waiting room next time and see if I can pick you out!
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- April 19, 2014 at 8:22 am
I've had my 8 and 16 week scans and both have shown pretty drastic improvements… Particularly with my liver, which was the real worry as it was progressing and multiplying really fast before I started braf/mek. I haven't had any new tumours and all the existing ones are either shrinking or stable… The very scary one in my liver had halved in size by four weeks. And my LDH levels are almost normal now… They had been about 400 at one time which I think is 3-4 x the normal level…
The lovely thing about these drugs is I only have to see the doctor every 4 weeks which is a real blessing when you work full time! Though my bosses have just been the most amazing and understanding people ever the whole time!
ill keep an eye out in the waiting room next time and see if I can pick you out!
-
- April 19, 2014 at 8:22 am
I've had my 8 and 16 week scans and both have shown pretty drastic improvements… Particularly with my liver, which was the real worry as it was progressing and multiplying really fast before I started braf/mek. I haven't had any new tumours and all the existing ones are either shrinking or stable… The very scary one in my liver had halved in size by four weeks. And my LDH levels are almost normal now… They had been about 400 at one time which I think is 3-4 x the normal level…
The lovely thing about these drugs is I only have to see the doctor every 4 weeks which is a real blessing when you work full time! Though my bosses have just been the most amazing and understanding people ever the whole time!
ill keep an eye out in the waiting room next time and see if I can pick you out!
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- April 16, 2014 at 1:03 pm
Hey Laura,
Hope your dad is doing ok… Melanoma research is pretty exciting at the moment… I think the majority of us stage-4-ers are just holding into the hope that our current treatments will keep us going until the next advancement comes along… It's certainly how I feel anyway!
I feel amazingly lucky really because I don't really feel any different physically than I ever have (dabrafenib fevers excluded… Yuck)
thanks for your best wishes… Here's to living… Even with stage four melanoma!
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- April 16, 2014 at 1:03 pm
Hey Laura,
Hope your dad is doing ok… Melanoma research is pretty exciting at the moment… I think the majority of us stage-4-ers are just holding into the hope that our current treatments will keep us going until the next advancement comes along… It's certainly how I feel anyway!
I feel amazingly lucky really because I don't really feel any different physically than I ever have (dabrafenib fevers excluded… Yuck)
thanks for your best wishes… Here's to living… Even with stage four melanoma!
-
- April 16, 2014 at 1:03 pm
Hey Laura,
Hope your dad is doing ok… Melanoma research is pretty exciting at the moment… I think the majority of us stage-4-ers are just holding into the hope that our current treatments will keep us going until the next advancement comes along… It's certainly how I feel anyway!
I feel amazingly lucky really because I don't really feel any different physically than I ever have (dabrafenib fevers excluded… Yuck)
thanks for your best wishes… Here's to living… Even with stage four melanoma!
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- April 16, 2014 at 12:52 pm
And I'm really glad more oncs are becoming aware of it but I really think patients need to be aware too!
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- April 16, 2014 at 12:52 pm
And I'm really glad more oncs are becoming aware of it but I really think patients need to be aware too!
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- April 16, 2014 at 12:52 pm
And I'm really glad more oncs are becoming aware of it but I really think patients need to be aware too!
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