› Forums › General Melanoma Community › Stage 3A long term effects question
- This topic has 27 replies, 6 voices, and was last updated 9 years, 3 months ago by
Linny.
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- January 28, 2015 at 4:55 pm
I was diagnosed with Stage 3a in 2007 while pregnant with my first child. Soon after he was born I underwent 3 surgeries(excision of the mole area, lymph node biopsy and later the complete removal of my lymph nodes because 2 came back positive). I went through 1 month of intensive immuno/chemo therapy followed by 11 months of interferon treatment. I am glad to say that I've been clear since 2009 but I still suffer from anxiety. Lately, my anxiety has been worse because I am pregnant with my second child and I'm concerned that the hormonal changes may cause recurrence.
Occasionally within the past 3 to 4 years I have experienced unusual symptoms that somewhat resemble MS symptoms. I have seen 2 different neurologist during the episodes but they've both told me I do not have MS. Although they couldn't tell me exactly what is going on with me, they did mentioned it could be stress/anxiety induced. The most recent neurologist I saw mentioned it could be long-term effects from the treatment but she also brought up that typically if there is any nerve damage from treatment, it is not episodal like my symptoms.
Has anyone else experienced this!? Any feedback will be much appreciated.
Maggie
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- January 28, 2015 at 5:19 pm
Hi Maggie,
Anxiety, given the nature of Melanoma, is something we all deal with in one form or another. A couple of suggestions. Have you taken part in an integrative medicine or counseling program at Rush? I'm sure they either have or can refer you. Speaking with others or seeing a counselor to,discuss your anxiety and fears can be helpful. Secondly, if you feel strongly about it get a second opinion. It may bring added peace of mind.
good luck!
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- January 28, 2015 at 5:19 pm
Hi Maggie,
Anxiety, given the nature of Melanoma, is something we all deal with in one form or another. A couple of suggestions. Have you taken part in an integrative medicine or counseling program at Rush? I'm sure they either have or can refer you. Speaking with others or seeing a counselor to,discuss your anxiety and fears can be helpful. Secondly, if you feel strongly about it get a second opinion. It may bring added peace of mind.
good luck!
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- January 28, 2015 at 5:19 pm
Hi Maggie,
Anxiety, given the nature of Melanoma, is something we all deal with in one form or another. A couple of suggestions. Have you taken part in an integrative medicine or counseling program at Rush? I'm sure they either have or can refer you. Speaking with others or seeing a counselor to,discuss your anxiety and fears can be helpful. Secondly, if you feel strongly about it get a second opinion. It may bring added peace of mind.
good luck!
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- January 29, 2015 at 12:20 am
Hi Maggie,
Congrats on the NED, and the pregnancy. I too was diagnosed after pregnancy, and did interferon at Rush (I only lasted 4 months!). I'm not sure what your symptoms are, but I completed interferon 3 years ago and still occasionally get the horrible achy feeling and neuropathy. I'm sure it's just that once you get the feeling it never goes away or you will always remember it anyway. I know for me before diagnosis I was in my late 20s and didn't have a care in the world if I felt achy or tired, well add some years and a kid and of course I'm constantly achy and tired. I make a deal with myself that after 48 hours of pain I will write it down and keep track of it, for me it usually goes away before I have to write it down.
Just remember chance of recurrence at this point is pretty low. I hope you have a great pregnancy! I'm looking forward to possibly having another child in a few years, at least I think!!
Take care
Caitlin
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- January 29, 2015 at 12:20 am
Hi Maggie,
Congrats on the NED, and the pregnancy. I too was diagnosed after pregnancy, and did interferon at Rush (I only lasted 4 months!). I'm not sure what your symptoms are, but I completed interferon 3 years ago and still occasionally get the horrible achy feeling and neuropathy. I'm sure it's just that once you get the feeling it never goes away or you will always remember it anyway. I know for me before diagnosis I was in my late 20s and didn't have a care in the world if I felt achy or tired, well add some years and a kid and of course I'm constantly achy and tired. I make a deal with myself that after 48 hours of pain I will write it down and keep track of it, for me it usually goes away before I have to write it down.
Just remember chance of recurrence at this point is pretty low. I hope you have a great pregnancy! I'm looking forward to possibly having another child in a few years, at least I think!!
Take care
Caitlin
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- January 29, 2015 at 12:20 am
Hi Maggie,
Congrats on the NED, and the pregnancy. I too was diagnosed after pregnancy, and did interferon at Rush (I only lasted 4 months!). I'm not sure what your symptoms are, but I completed interferon 3 years ago and still occasionally get the horrible achy feeling and neuropathy. I'm sure it's just that once you get the feeling it never goes away or you will always remember it anyway. I know for me before diagnosis I was in my late 20s and didn't have a care in the world if I felt achy or tired, well add some years and a kid and of course I'm constantly achy and tired. I make a deal with myself that after 48 hours of pain I will write it down and keep track of it, for me it usually goes away before I have to write it down.
Just remember chance of recurrence at this point is pretty low. I hope you have a great pregnancy! I'm looking forward to possibly having another child in a few years, at least I think!!
Take care
Caitlin
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- January 29, 2015 at 5:19 am
Although your symptoms possibly could be related to your prior treatment I feel the need to ask you if you drink diet soda? The aspartame sweetner in diet soda has been known to cause symptoms that mimic MS symptoms. Fortunately when the consumption of aspartame is stopped the symptoms go away.
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- February 1, 2015 at 9:39 pm
Cynthia has a good point. If you drink diet soda, try stopping and see if you feel better. Also, know that Nutra-Sweet and Equal contain it as well. If you use either one of those, stop that as well. Actually, just toss them in the garbage.
None of those artificial sweeteners are any good. If you prefer to not use refined sugar, you could try Stevia, which is plant-based.
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- February 1, 2015 at 9:39 pm
Cynthia has a good point. If you drink diet soda, try stopping and see if you feel better. Also, know that Nutra-Sweet and Equal contain it as well. If you use either one of those, stop that as well. Actually, just toss them in the garbage.
None of those artificial sweeteners are any good. If you prefer to not use refined sugar, you could try Stevia, which is plant-based.
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- February 1, 2015 at 9:39 pm
Cynthia has a good point. If you drink diet soda, try stopping and see if you feel better. Also, know that Nutra-Sweet and Equal contain it as well. If you use either one of those, stop that as well. Actually, just toss them in the garbage.
None of those artificial sweeteners are any good. If you prefer to not use refined sugar, you could try Stevia, which is plant-based.
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- February 4, 2015 at 6:19 pm
Thanks for your reply. I actually don't drink much soda or diet soda. I do drink a lot of herbal and green teas but if I ever sweeten it, I use stevia. When I get the neuropathy symptoms, it seems very random and not correlated with anything. I get very stressed out when it does occur which seems to make the symptoms worse. I also get tinnitus(ringing in the ear) on occasion.
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- February 4, 2015 at 6:19 pm
Thanks for your reply. I actually don't drink much soda or diet soda. I do drink a lot of herbal and green teas but if I ever sweeten it, I use stevia. When I get the neuropathy symptoms, it seems very random and not correlated with anything. I get very stressed out when it does occur which seems to make the symptoms worse. I also get tinnitus(ringing in the ear) on occasion.
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- February 4, 2015 at 6:19 pm
Thanks for your reply. I actually don't drink much soda or diet soda. I do drink a lot of herbal and green teas but if I ever sweeten it, I use stevia. When I get the neuropathy symptoms, it seems very random and not correlated with anything. I get very stressed out when it does occur which seems to make the symptoms worse. I also get tinnitus(ringing in the ear) on occasion.
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- January 29, 2015 at 5:19 am
Although your symptoms possibly could be related to your prior treatment I feel the need to ask you if you drink diet soda? The aspartame sweetner in diet soda has been known to cause symptoms that mimic MS symptoms. Fortunately when the consumption of aspartame is stopped the symptoms go away.
-
- January 29, 2015 at 5:19 am
Although your symptoms possibly could be related to your prior treatment I feel the need to ask you if you drink diet soda? The aspartame sweetner in diet soda has been known to cause symptoms that mimic MS symptoms. Fortunately when the consumption of aspartame is stopped the symptoms go away.
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- February 1, 2015 at 5:56 pm
If you've been infected with Lyme Disease, a pregnancy can cause an exacerbation of symptoms. MS-like symptoms are very common with Lyme.
I strongly urge you to get checked out by a Lyme-Literate Medical Doctor (LLMD). Not all neurologists, rheumatologists, or infectious disease specialists are Lyme literate so I caution you against consulting with one of them. Sorry to be negative, but I personally know of too many nightmarish stories that patients and friends have had with them. I recommend seeking out an LLMD who treats patients using the International Lyme and Assoicated Diseases Society (ILADS) treatment protocols. If you've been tested for Lyme and the results have been negative, you need to know that false negatives are common so it's all the more important to seek out one of these specialists. If you live in NJ, I can recommend someone. If you don't you can use the ILADS web site to help you find someone in your area: http://ilads.org/ilads_media/physician-referral/
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- February 4, 2015 at 6:53 pm
Thanks for your reply. I will look into that but I believe I have been tested for lymes. Also … I have not experienced any neuropthy symptoms since my pregnancy began in September. The first episode happened two winters ago and the most recent episode happened last summer where symptoms lasted for about a month. Would an MRI of your brain and spine show anything? My scans have always come back perfectly normal.
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- February 4, 2015 at 6:53 pm
Thanks for your reply. I will look into that but I believe I have been tested for lymes. Also … I have not experienced any neuropthy symptoms since my pregnancy began in September. The first episode happened two winters ago and the most recent episode happened last summer where symptoms lasted for about a month. Would an MRI of your brain and spine show anything? My scans have always come back perfectly normal.
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- February 5, 2015 at 11:15 am
I'm not sure what would show up on a brain or spine MRI for Lyme Disease.
Since the tests are not reliable, the diagnosis is mostly clinical, hence the importance of finding someone who's experienced in treating it. A negative test result in Lyme does not necessarily rule out disease.
Also, if any doctor refers to the disease as "Lyme's Disease", run like the wind from that doctor because it means that he or she is not even familiar enough with the research and studies on it to call it by its proper name, which "Lyme Disease" (no "s").
You may want to ask some more questions on a Lyme forum. Someone there may be able to answer your MRI question. Go to http://www.lymenet.org/ and click the link called "Flash Discussion".
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- February 5, 2015 at 11:15 am
I'm not sure what would show up on a brain or spine MRI for Lyme Disease.
Since the tests are not reliable, the diagnosis is mostly clinical, hence the importance of finding someone who's experienced in treating it. A negative test result in Lyme does not necessarily rule out disease.
Also, if any doctor refers to the disease as "Lyme's Disease", run like the wind from that doctor because it means that he or she is not even familiar enough with the research and studies on it to call it by its proper name, which "Lyme Disease" (no "s").
You may want to ask some more questions on a Lyme forum. Someone there may be able to answer your MRI question. Go to http://www.lymenet.org/ and click the link called "Flash Discussion".
-
- February 5, 2015 at 11:15 am
I'm not sure what would show up on a brain or spine MRI for Lyme Disease.
Since the tests are not reliable, the diagnosis is mostly clinical, hence the importance of finding someone who's experienced in treating it. A negative test result in Lyme does not necessarily rule out disease.
Also, if any doctor refers to the disease as "Lyme's Disease", run like the wind from that doctor because it means that he or she is not even familiar enough with the research and studies on it to call it by its proper name, which "Lyme Disease" (no "s").
You may want to ask some more questions on a Lyme forum. Someone there may be able to answer your MRI question. Go to http://www.lymenet.org/ and click the link called "Flash Discussion".
-
- February 4, 2015 at 6:53 pm
Thanks for your reply. I will look into that but I believe I have been tested for lymes. Also … I have not experienced any neuropthy symptoms since my pregnancy began in September. The first episode happened two winters ago and the most recent episode happened last summer where symptoms lasted for about a month. Would an MRI of your brain and spine show anything? My scans have always come back perfectly normal.
-
- February 1, 2015 at 5:56 pm
If you've been infected with Lyme Disease, a pregnancy can cause an exacerbation of symptoms. MS-like symptoms are very common with Lyme.
I strongly urge you to get checked out by a Lyme-Literate Medical Doctor (LLMD). Not all neurologists, rheumatologists, or infectious disease specialists are Lyme literate so I caution you against consulting with one of them. Sorry to be negative, but I personally know of too many nightmarish stories that patients and friends have had with them. I recommend seeking out an LLMD who treats patients using the International Lyme and Assoicated Diseases Society (ILADS) treatment protocols. If you've been tested for Lyme and the results have been negative, you need to know that false negatives are common so it's all the more important to seek out one of these specialists. If you live in NJ, I can recommend someone. If you don't you can use the ILADS web site to help you find someone in your area: http://ilads.org/ilads_media/physician-referral/
-
- February 1, 2015 at 5:56 pm
If you've been infected with Lyme Disease, a pregnancy can cause an exacerbation of symptoms. MS-like symptoms are very common with Lyme.
I strongly urge you to get checked out by a Lyme-Literate Medical Doctor (LLMD). Not all neurologists, rheumatologists, or infectious disease specialists are Lyme literate so I caution you against consulting with one of them. Sorry to be negative, but I personally know of too many nightmarish stories that patients and friends have had with them. I recommend seeking out an LLMD who treats patients using the International Lyme and Assoicated Diseases Society (ILADS) treatment protocols. If you've been tested for Lyme and the results have been negative, you need to know that false negatives are common so it's all the more important to seek out one of these specialists. If you live in NJ, I can recommend someone. If you don't you can use the ILADS web site to help you find someone in your area: http://ilads.org/ilads_media/physician-referral/
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