Beehappy

Hi Janis.

My husband was diagnosed 3c and had a total dissection under his right arm extending partly into chest – they removed a total of 4o nodes so it was deep and extensive.  

I second the referral to the lymphodema physical therapist – if possible it may be helpful for you to also go to the appointment.  I learned how to massage my husband's arm and side to help with the flow of fluid and alleviate some of his swelling.  The PT can also measure for and order compression garments that can be worn to help with lymphodema.

My husband did have significant nerve involvement in his incision – he had some serious nerve pain (stabbing and shocking) during his recovery.  The good news is that it gets better with time.  My friend is a naturopathic healer and she recommended lions mane mushroom supplements (they help with nerve regeneration).  Of course, you should consult with your doctor before taking any additional supplements.  

My husband is almost exactly 1 year out from his procedure and all pain is gone with some lingering sensitivity near scar site.  He has some swelling which increases with the heat of summer or his air travel for work, but it is manageable and I massage him when necessary.

Wishing your husband NED status and wishing you the best in supporting him in this battle.

Rebecca

Hi Janis.

My husband was diagnosed 3c and had a total dissection under his right arm extending partly into chest – they removed a total of 4o nodes so it was deep and extensive.  

I second the referral to the lymphodema physical therapist – if possible it may be helpful for you to also go to the appointment.  I learned how to massage my husband's arm and side to help with the flow of fluid and alleviate some of his swelling.  The PT can also measure for and order compression garments that can be worn to help with lymphodema.

My husband did have significant nerve involvement in his incision – he had some serious nerve pain (stabbing and shocking) during his recovery.  The good news is that it gets better with time.  My friend is a naturopathic healer and she recommended lions mane mushroom supplements (they help with nerve regeneration).  Of course, you should consult with your doctor before taking any additional supplements.  

My husband is almost exactly 1 year out from his procedure and all pain is gone with some lingering sensitivity near scar site.  He has some swelling which increases with the heat of summer or his air travel for work, but it is manageable and I massage him when necessary.

Wishing your husband NED status and wishing you the best in supporting him in this battle.

Rebecca

Hi Janis.

My husband was diagnosed 3c and had a total dissection under his right arm extending partly into chest – they removed a total of 4o nodes so it was deep and extensive.  

I second the referral to the lymphodema physical therapist – if possible it may be helpful for you to also go to the appointment.  I learned how to massage my husband's arm and side to help with the flow of fluid and alleviate some of his swelling.  The PT can also measure for and order compression garments that can be worn to help with lymphodema.

My husband did have significant nerve involvement in his incision – he had some serious nerve pain (stabbing and shocking) during his recovery.  The good news is that it gets better with time.  My friend is a naturopathic healer and she recommended lions mane mushroom supplements (they help with nerve regeneration).  Of course, you should consult with your doctor before taking any additional supplements.  

My husband is almost exactly 1 year out from his procedure and all pain is gone with some lingering sensitivity near scar site.  He has some swelling which increases with the heat of summer or his air travel for work, but it is manageable and I massage him when necessary.

Wishing your husband NED status and wishing you the best in supporting him in this battle.

Rebecca

My husband is at the end of a year trial (either Ipi or Nivo) and he has turned noticeably grey.  He hasn't had hair loss, but his hair has grown unusually fast during his treatment.  

My husband is at the end of a year trial (either Ipi or Nivo) and he has turned noticeably grey.  He hasn't had hair loss, but his hair has grown unusually fast during his treatment.  

My husband is at the end of a year trial (either Ipi or Nivo) and he has turned noticeably grey.  He hasn't had hair loss, but his hair has grown unusually fast during his treatment.  

My husband was diagnosed stage 3c 19 months ago.  He had his PET upon initial discovery – it showed no spread.  He had sentinal node biopsy – they took 3 nodes and 1 came back positive.  He decided to have total lymph disection – they removed 42 additional nodes and 2 of those came back positive (micro mets).  He was placed on a study –  given either Ipi or Nivo (we don't know which) infusions for a year.  He has been NED since.  Poor guy has had a few skin biopsies (which came back negative) and he had a blood clot due to his port and frequent travel (he flies at least 2x a month) but he happily had his port removed 3 months ago – so that is not a concern any longer.

Every scan (3 month intervals for the first 2 years) is still surrounded with a great deal of anxiety.  That is just the new reality after a cancer diagnosis.  Remember that there are a lot of cancer surivial stories.  I try to think that we are going to be one of them.  As you get past the shock and fear in the first few months, and the numeous doctor appointments with all the new information and decisions to be made…. life does begin to slip back into normal rythems and the fear gets a little less and less.  We are 18 months NED and that is more than I had expected my first visit to this board. 

My husband was diagnosed stage 3c 19 months ago.  He had his PET upon initial discovery – it showed no spread.  He had sentinal node biopsy – they took 3 nodes and 1 came back positive.  He decided to have total lymph disection – they removed 42 additional nodes and 2 of those came back positive (micro mets).  He was placed on a study –  given either Ipi or Nivo (we don't know which) infusions for a year.  He has been NED since.  Poor guy has had a few skin biopsies (which came back negative) and he had a blood clot due to his port and frequent travel (he flies at least 2x a month) but he happily had his port removed 3 months ago – so that is not a concern any longer.

Every scan (3 month intervals for the first 2 years) is still surrounded with a great deal of anxiety.  That is just the new reality after a cancer diagnosis.  Remember that there are a lot of cancer surivial stories.  I try to think that we are going to be one of them.  As you get past the shock and fear in the first few months, and the numeous doctor appointments with all the new information and decisions to be made…. life does begin to slip back into normal rythems and the fear gets a little less and less.  We are 18 months NED and that is more than I had expected my first visit to this board. 

My husband was diagnosed stage 3c 19 months ago.  He had his PET upon initial discovery – it showed no spread.  He had sentinal node biopsy – they took 3 nodes and 1 came back positive.  He decided to have total lymph disection – they removed 42 additional nodes and 2 of those came back positive (micro mets).  He was placed on a study –  given either Ipi or Nivo (we don't know which) infusions for a year.  He has been NED since.  Poor guy has had a few skin biopsies (which came back negative) and he had a blood clot due to his port and frequent travel (he flies at least 2x a month) but he happily had his port removed 3 months ago – so that is not a concern any longer.

Every scan (3 month intervals for the first 2 years) is still surrounded with a great deal of anxiety.  That is just the new reality after a cancer diagnosis.  Remember that there are a lot of cancer surivial stories.  I try to think that we are going to be one of them.  As you get past the shock and fear in the first few months, and the numeous doctor appointments with all the new information and decisions to be made…. life does begin to slip back into normal rythems and the fear gets a little less and less.  We are 18 months NED and that is more than I had expected my first visit to this board. 

Hello Tom.

How are you feeling?  Are you done with the infusions? We are preparing for the 1 year scans and hope to finish the 1st week of Sept.

I am also curious about the after effects of the Opdivo.

Rebecca

Hello Tom.

How are you feeling?  Are you done with the infusions? We are preparing for the 1 year scans and hope to finish the 1st week of Sept.

I am also curious about the after effects of the Opdivo.

Rebecca

Hello Tom.

How are you feeling?  Are you done with the infusions? We are preparing for the 1 year scans and hope to finish the 1st week of Sept.

I am also curious about the after effects of the Opdivo.

Rebecca

My husband (diagnosed 3C August 2015) has been on a trial where he has either been getting Ipi or Nivo since Sept.  He has had intestinal issues, bowel inflammation, thyroid dysfunction (which required him to go on prednisone), poor liver function and he also suffered a blood clot near his port requiring shots for 10 days – he is now on warfarin until he completes treatment and they decide to remove his port.  He has lymphodema in his right arm (where he had 40 nodes removed).

Since we are a blind trial – we do not know which drug he has been given so we do not know if it is the effect of the Ipi but the doctors have speculated his side effects are more consistent with those of Ipi patients.

I have met with a dietician and holistic health specialists to try to combat some of his side effects.  (Since the oncologist seems to have a tough it out or treat with more drugs that could bump him off the trial approach). We have found some things to be helpful.

Juicing has been a good way to get nutrients without distressing his stomach (giving his colon a bit of a break).  He drinks juice once a day – I make it with carrots, beets, lemon and ginger to cleanse the liver.

Sitz baths with Epsom salt, lavender oil and coconut oil help with some of the other issues that come along with the bowel and intestinal issues.

Drainage massage of his arm and side lessens the swelling and encourage lymphatic drainage.  I use almond oil with frankincense, cedar wood and melaleuca essential oils when giving massage.

Selenium supplements are thought to improve endocrine function – they can effect blood thinners so it is important to discuss with doctor.

Ecinachia is also thought to promote healthy thyroid function so I get it in tea form to drink.

Also a Vitamin D and B supplement for good measure.

His side effects peaked at the 4 – 5 month mark, so it would be after he received the 4th Ipi infusion.  It took a month of steroids to get the thyroid back to normal range.  Another month to get the steroids out of his system.  He continues to have stomach issues, but he may have recently gotten a maintenance dose.

I hope your body starts to regulate and you are able to get back a feeling better.  We have also been told that those who have the endocrine responses tend to also have better outcomes as far as immune systems beating back the cancer for durable results.  

Here is to many years NED!

Rebecca

My husband (diagnosed 3C August 2015) has been on a trial where he has either been getting Ipi or Nivo since Sept.  He has had intestinal issues, bowel inflammation, thyroid dysfunction (which required him to go on prednisone), poor liver function and he also suffered a blood clot near his port requiring shots for 10 days – he is now on warfarin until he completes treatment and they decide to remove his port.  He has lymphodema in his right arm (where he had 40 nodes removed).

Since we are a blind trial – we do not know which drug he has been given so we do not know if it is the effect of the Ipi but the doctors have speculated his side effects are more consistent with those of Ipi patients.

I have met with a dietician and holistic health specialists to try to combat some of his side effects.  (Since the oncologist seems to have a tough it out or treat with more drugs that could bump him off the trial approach). We have found some things to be helpful.

Juicing has been a good way to get nutrients without distressing his stomach (giving his colon a bit of a break).  He drinks juice once a day – I make it with carrots, beets, lemon and ginger to cleanse the liver.

Sitz baths with Epsom salt, lavender oil and coconut oil help with some of the other issues that come along with the bowel and intestinal issues.

Drainage massage of his arm and side lessens the swelling and encourage lymphatic drainage.  I use almond oil with frankincense, cedar wood and melaleuca essential oils when giving massage.

Selenium supplements are thought to improve endocrine function – they can effect blood thinners so it is important to discuss with doctor.

Ecinachia is also thought to promote healthy thyroid function so I get it in tea form to drink.

Also a Vitamin D and B supplement for good measure.

His side effects peaked at the 4 – 5 month mark, so it would be after he received the 4th Ipi infusion.  It took a month of steroids to get the thyroid back to normal range.  Another month to get the steroids out of his system.  He continues to have stomach issues, but he may have recently gotten a maintenance dose.

I hope your body starts to regulate and you are able to get back a feeling better.  We have also been told that those who have the endocrine responses tend to also have better outcomes as far as immune systems beating back the cancer for durable results.  

Here is to many years NED!

Rebecca

My husband (diagnosed 3C August 2015) has been on a trial where he has either been getting Ipi or Nivo since Sept.  He has had intestinal issues, bowel inflammation, thyroid dysfunction (which required him to go on prednisone), poor liver function and he also suffered a blood clot near his port requiring shots for 10 days – he is now on warfarin until he completes treatment and they decide to remove his port.  He has lymphodema in his right arm (where he had 40 nodes removed).

Since we are a blind trial – we do not know which drug he has been given so we do not know if it is the effect of the Ipi but the doctors have speculated his side effects are more consistent with those of Ipi patients.

I have met with a dietician and holistic health specialists to try to combat some of his side effects.  (Since the oncologist seems to have a tough it out or treat with more drugs that could bump him off the trial approach). We have found some things to be helpful.

Juicing has been a good way to get nutrients without distressing his stomach (giving his colon a bit of a break).  He drinks juice once a day – I make it with carrots, beets, lemon and ginger to cleanse the liver.

Sitz baths with Epsom salt, lavender oil and coconut oil help with some of the other issues that come along with the bowel and intestinal issues.

Drainage massage of his arm and side lessens the swelling and encourage lymphatic drainage.  I use almond oil with frankincense, cedar wood and melaleuca essential oils when giving massage.

Selenium supplements are thought to improve endocrine function – they can effect blood thinners so it is important to discuss with doctor.

Ecinachia is also thought to promote healthy thyroid function so I get it in tea form to drink.

Also a Vitamin D and B supplement for good measure.

His side effects peaked at the 4 – 5 month mark, so it would be after he received the 4th Ipi infusion.  It took a month of steroids to get the thyroid back to normal range.  Another month to get the steroids out of his system.  He continues to have stomach issues, but he may have recently gotten a maintenance dose.

I hope your body starts to regulate and you are able to get back a feeling better.  We have also been told that those who have the endocrine responses tend to also have better outcomes as far as immune systems beating back the cancer for durable results.  

Here is to many years NED!

Rebecca