› Forums › General Melanoma Community › Anyone out there like me?
- This topic has 42 replies, 7 voices, and was last updated 9 years, 1 month ago by
Beehappy.
- Post
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- July 4, 2016 at 8:48 pm
I am a 43-year-old male that was first diagnosed with melanoma in 2009. I had an in situ melanoma (.7mm Breslow thickness) removed via WLE. I was followed by my dermatologist and oncologist for the last 6 years. In June of last year, my dermatologist felt a swollen lymph node under my left arm and I had an axillary dissection in August. 1 node of 16 tested positive for metastatic melanoma and was staged at 3B. I developed lymphedema shortly after surgery and I have been working with garments, a pump, and OT twice a week to try to keep it between stage 2 and 3.
I started 10mg/kg Ipilimumab infusions in early November. The last infusion I received was on New Year's Eve, which was my 3rd. In early January, I was hospitalized with hypophysitis and treated via intravenous high dose steroids. I was sent home on hydrocortisone, but was hospitalized again when the pituitary headaches returned. I was given more high dose steroids (120mg) and have been on them trying to taper basically since January 5th. Each time I reached the end of the taper and transitioned to hydrocortisone, I had major issues.
Over the past 6 months, I have been fighting the ipi side effects and also the side effects of all the meds that they are giving me to treat the ipi side effects. I have been diagnosed with Ipilimumab-induced hypophysitis (swollen pituitary gland), Prednisone-induced pre-diabetes, Ipilimumab-induced hepatitis, Prednisone-induced hypothyroidism, Prednisone-induced hypomania, and my former 20/20 vision is now a mess from the HD prednisone. My endocrine system is non-functional, but I hope that it regains some function when I can finally be done with the steroids.
My last MRI showed that my hypophysitis had resolved. That is good! My liver has been the last to cooperate. At the end of all but my last my tapers, I have been hospitalized or placed back on high dose steroids to try to get my counts to drop to normal levels. I finally was able to get off of the prednisone on 6/5/16. I am now taking 20mg of hydrocortisone in the AM and 10 in the PM. In addition I am taking Cellcept to try to keep my liver enzymes down.
I have had a ton of CT’s and MRI’s over the last 6 months. All have been checking on areas where I have had all the side effects to try to find the problems. They have all been clear of mets. That is something to be very happy about, and I am. I will not receive any more ipi infusions due to the toxicity that occurred. If melanoma returns, my oncologist will look at a different treatment option.
My major issues right now are the edema, swelling, pain, and weight gain that no one can seem to help me with. I went from running 5 full marathons and 6 half marathons 2 years ago, to gaining 60 lbs of swelling in 2 months. I am eating clean and doing my best to move with difficulty, but I am not able to get the miserable swelling to decrease. My oncologist blames everything on the prednisone. I was just diagnosed with 3 superficial blood clots in my right leg that I am treating with Lovenox injections in my stomach twice a day for 3 months. I was also diagnosed with Meralgia Paraesthetica that makes it tough to sleep.
Has anyone out there experienced some similar side effects of ipi? If so, I would love to hear from you. I still believe the ipi is very active in my body, as it has shown with my liver and causing all of this swelling. I know that side effects can continue to show up for a year after my last treatment, but this one thing after another is getting very hard to handle.
My thoughts and prayers are with all of you!!
- Replies
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- July 4, 2016 at 9:25 pm
Does this damn disease ever not recur? I bet you were told 0.7mm – don't worry, you'll be fine, you'll probably never have to deal with melanoma again, just see your derm and you'll be fine. One more story where the damn thing comes back years later.
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- July 4, 2016 at 9:33 pm
Hi B_Hutz, wow what a list of side effects!!!! It makes me think of the post last week by SleepyT23 where he was given the advice by his Oncologist that he is young and fit and would fly through the treatments with no side effects. Ipi at 10mg/kg for stage three folks is a very high dose and I really hope that the Oncologist out there are taking the time to go over the results of the EORTC 18071 study that was the basis for it's approval. Best wishes!!! Ed
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- July 4, 2016 at 9:33 pm
Hi B_Hutz, wow what a list of side effects!!!! It makes me think of the post last week by SleepyT23 where he was given the advice by his Oncologist that he is young and fit and would fly through the treatments with no side effects. Ipi at 10mg/kg for stage three folks is a very high dose and I really hope that the Oncologist out there are taking the time to go over the results of the EORTC 18071 study that was the basis for it's approval. Best wishes!!! Ed
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- July 4, 2016 at 9:33 pm
Hi B_Hutz, wow what a list of side effects!!!! It makes me think of the post last week by SleepyT23 where he was given the advice by his Oncologist that he is young and fit and would fly through the treatments with no side effects. Ipi at 10mg/kg for stage three folks is a very high dose and I really hope that the Oncologist out there are taking the time to go over the results of the EORTC 18071 study that was the basis for it's approval. Best wishes!!! Ed
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- July 4, 2016 at 10:27 pm
Sorry, I have no help with the side effects but wish you well.
One note, your melanoma was never in situ. It was always stage 1. In situ, by definition, has no depth so 0.7mm and in situ don't add up. Clarifying for other readers.
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- July 5, 2016 at 4:51 am
Then where does the Breslow depth of 0.7mm come from? That is not in situ. Once you have a depth, then it has penetrated into the dermis. Any Breslow depth automatically means it stage 1 and has gone below the epidermis. Breslow depth is measured from the epidermal junction downward into the dermis.
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- July 5, 2016 at 4:51 am
Then where does the Breslow depth of 0.7mm come from? That is not in situ. Once you have a depth, then it has penetrated into the dermis. Any Breslow depth automatically means it stage 1 and has gone below the epidermis. Breslow depth is measured from the epidermal junction downward into the dermis.
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- July 5, 2016 at 4:51 am
Then where does the Breslow depth of 0.7mm come from? That is not in situ. Once you have a depth, then it has penetrated into the dermis. Any Breslow depth automatically means it stage 1 and has gone below the epidermis. Breslow depth is measured from the epidermal junction downward into the dermis.
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- July 5, 2016 at 5:41 am
I thought the same – a Breslow of 0.7mm is unlikely to be in situ. But either way, it's a very thin melanoma that's metastasised, which is just plain bad luck, being in that few % that progress even though very thin and fully removed. Here's hoping that the treatment becomes more tolerable AND keeps the melanoma confined or better still NED for many many years to come.
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- July 5, 2016 at 5:41 am
I thought the same – a Breslow of 0.7mm is unlikely to be in situ. But either way, it's a very thin melanoma that's metastasised, which is just plain bad luck, being in that few % that progress even though very thin and fully removed. Here's hoping that the treatment becomes more tolerable AND keeps the melanoma confined or better still NED for many many years to come.
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- July 5, 2016 at 5:41 am
I thought the same – a Breslow of 0.7mm is unlikely to be in situ. But either way, it's a very thin melanoma that's metastasised, which is just plain bad luck, being in that few % that progress even though very thin and fully removed. Here's hoping that the treatment becomes more tolerable AND keeps the melanoma confined or better still NED for many many years to come.
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- July 13, 2016 at 7:31 pm
Thank you for the clarification! No one discussed my stage in 2009. I just looked at the pathology report again and reads:
Clarks Level 4. Breslow depth of invasion .8mm. Ulceration not present. The margins are uninvolved by tumor. The mitotic rate is less than 1/mm2.
Unfortunately, it showed up again in my lymph nodes nearest the excision in June of 2015. Pathology from my axillary dissection reads:
ADDENDUM DIAGNOSIS:
FINAL DIAGNOSIS:A. LYMPH NODES, LEFT AXILLA, DISSECTION:1. METASTATIC MELANOMA DETECTED IN ONE OF SIXTEEN LYMPH NODES (1/16).Microscopic Description: Pan-melanoma cocktail was performed on allblocks, highlighting metastatic melanoma in block A15, which represents a smallsampling from a 4 cm grossly-positive lymph node with tumor necrosis andextracapsular extension. Some immunoreactive cells are also present in blockA3, but given their small size, often flattened shape, and mostly intracapsularsetting, they are interpreted as a nodal nevus. The current pathologic nodalstaging is pN1b.The neoplastic cells are immunohistochemically negative for BRAF. -
- July 13, 2016 at 7:31 pm
Thank you for the clarification! No one discussed my stage in 2009. I just looked at the pathology report again and reads:
Clarks Level 4. Breslow depth of invasion .8mm. Ulceration not present. The margins are uninvolved by tumor. The mitotic rate is less than 1/mm2.
Unfortunately, it showed up again in my lymph nodes nearest the excision in June of 2015. Pathology from my axillary dissection reads:
ADDENDUM DIAGNOSIS:
FINAL DIAGNOSIS:A. LYMPH NODES, LEFT AXILLA, DISSECTION:1. METASTATIC MELANOMA DETECTED IN ONE OF SIXTEEN LYMPH NODES (1/16).Microscopic Description: Pan-melanoma cocktail was performed on allblocks, highlighting metastatic melanoma in block A15, which represents a smallsampling from a 4 cm grossly-positive lymph node with tumor necrosis andextracapsular extension. Some immunoreactive cells are also present in blockA3, but given their small size, often flattened shape, and mostly intracapsularsetting, they are interpreted as a nodal nevus. The current pathologic nodalstaging is pN1b.The neoplastic cells are immunohistochemically negative for BRAF. -
- July 13, 2016 at 7:31 pm
Thank you for the clarification! No one discussed my stage in 2009. I just looked at the pathology report again and reads:
Clarks Level 4. Breslow depth of invasion .8mm. Ulceration not present. The margins are uninvolved by tumor. The mitotic rate is less than 1/mm2.
Unfortunately, it showed up again in my lymph nodes nearest the excision in June of 2015. Pathology from my axillary dissection reads:
ADDENDUM DIAGNOSIS:
FINAL DIAGNOSIS:A. LYMPH NODES, LEFT AXILLA, DISSECTION:1. METASTATIC MELANOMA DETECTED IN ONE OF SIXTEEN LYMPH NODES (1/16).Microscopic Description: Pan-melanoma cocktail was performed on allblocks, highlighting metastatic melanoma in block A15, which represents a smallsampling from a 4 cm grossly-positive lymph node with tumor necrosis andextracapsular extension. Some immunoreactive cells are also present in blockA3, but given their small size, often flattened shape, and mostly intracapsularsetting, they are interpreted as a nodal nevus. The current pathologic nodalstaging is pN1b.The neoplastic cells are immunohistochemically negative for BRAF.
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- July 5, 2016 at 6:09 am
I finished my fourth Ipi infusion about one year ago. I had four infusions of 3 mg/kg. In the UK there are no maintence doses. I had tumours before the Ipi. Those tumours shrank and are, at the moment, not detectable by scan.
I absolutely understand about what it is like when everyone tells you that your body 'should' be reacting in one way and it seems to be on a completely different agenda. Maybe one day they will understand better what Ipi actually does other that persuading our T cells to attack melanoma cells.
I had ipi induced hypophysitis and now my anterior pituitary gland is non functional. Unlike you, I never took high-level steroids and was never hospitalised. The highest dose I have ever taken is 15 mg prednisolone per day.
I have hypothyroidism but that was not induced by prednisolone. It is because my thyroid is not receiving any messages from my anterior pituitary gland, I am on lexothyroxine.
My adrenal cortex does not work, again because of not receiving hormonal messages fron my anteripr pituitary gland, so I have to take a corostol replacement. I am taking low dose prednisolone.
My endocrine team think the damage to my anterior pituitary is permanent. They believe I will be on levothyroxine and a cortisol replacement (presently prednisolone) permanently.
If I were male, I would also be on testosterone If I were younger, they would be replacing my missing female reproductive hormones As I am female and post-menopausal, I am not.
Do you have an endrocrinologist? if not, can you find one to consult with?
My ipi side effects came back about three months after my final infusion. They were rash and diarrhoea. (My gut has never been the same since my second infusion of ipi.)
I sometimes think my ipi side effects have returned but with less force at other times during the last year. It had been extremely difficult to get my steroid dose down to a 'replacement level' (usually between 5 mg and 7.5 mg) per day. The lowest I can get it and stay functional is 8 mg. At the moment that is not enough and I am on 8.5 mg.
Luckily I am fine with prednisolone. I have refused to transition to hydrocortisone for now. Stabilty is all! I also have not done well on a split dose. I take my 8.5 mg as a single dose in the morning.
If I were on 30 mg predniolone per day, as you are, I would be bouncing off the walls and the ceiling. What about a slow taper heading for daily dose of 15 mg prednisolone (maybe split 10mg/5mg) and seeing what happens?
As I said, my gut has not been the same since I went on Ipi. I had almost constant diarrhoea and appalling wind. I could not take the standard treatment for wind because it interferred with levothyroxine uptake. I got to the stage where all I wanted to do was weep.
My GP (general practitioner) helped. He suggested looking at it as if it were IBS (Irritable Bowel Syndrome). I elliminated most of the insoluble fibre from my diet, replacing my whole fruit and vegetables with cold-pressed juiced ones.I put soluble fibre (Benefiber) in the juice. I have also discovered (through trial and error) a dietary supplement containing lpha-galactosidase helps. I am now on almost my previous diet but I still keep the insiluble fibre low, take the soluble fibre and the supplment. I also now take Vtamin D because a recent blood test showed that was low
I mention the gut problems because I could not get any of my hospital doctors to take that seriously but it was ruining my day-to-day life. In the end I found my own way through. I think you may have to do the same.
I wish I could help with abvice about.the lynphoedma. Maybe someone else can.
As for exercise, I have a crosstrainer. I can't say that I use it enough, but it is a great bit of kit and the only exercise machine I have ever been able to use.
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- July 5, 2016 at 6:09 am
I finished my fourth Ipi infusion about one year ago. I had four infusions of 3 mg/kg. In the UK there are no maintence doses. I had tumours before the Ipi. Those tumours shrank and are, at the moment, not detectable by scan.
I absolutely understand about what it is like when everyone tells you that your body 'should' be reacting in one way and it seems to be on a completely different agenda. Maybe one day they will understand better what Ipi actually does other that persuading our T cells to attack melanoma cells.
I had ipi induced hypophysitis and now my anterior pituitary gland is non functional. Unlike you, I never took high-level steroids and was never hospitalised. The highest dose I have ever taken is 15 mg prednisolone per day.
I have hypothyroidism but that was not induced by prednisolone. It is because my thyroid is not receiving any messages from my anterior pituitary gland, I am on lexothyroxine.
My adrenal cortex does not work, again because of not receiving hormonal messages fron my anteripr pituitary gland, so I have to take a corostol replacement. I am taking low dose prednisolone.
My endocrine team think the damage to my anterior pituitary is permanent. They believe I will be on levothyroxine and a cortisol replacement (presently prednisolone) permanently.
If I were male, I would also be on testosterone If I were younger, they would be replacing my missing female reproductive hormones As I am female and post-menopausal, I am not.
Do you have an endrocrinologist? if not, can you find one to consult with?
My ipi side effects came back about three months after my final infusion. They were rash and diarrhoea. (My gut has never been the same since my second infusion of ipi.)
I sometimes think my ipi side effects have returned but with less force at other times during the last year. It had been extremely difficult to get my steroid dose down to a 'replacement level' (usually between 5 mg and 7.5 mg) per day. The lowest I can get it and stay functional is 8 mg. At the moment that is not enough and I am on 8.5 mg.
Luckily I am fine with prednisolone. I have refused to transition to hydrocortisone for now. Stabilty is all! I also have not done well on a split dose. I take my 8.5 mg as a single dose in the morning.
If I were on 30 mg predniolone per day, as you are, I would be bouncing off the walls and the ceiling. What about a slow taper heading for daily dose of 15 mg prednisolone (maybe split 10mg/5mg) and seeing what happens?
As I said, my gut has not been the same since I went on Ipi. I had almost constant diarrhoea and appalling wind. I could not take the standard treatment for wind because it interferred with levothyroxine uptake. I got to the stage where all I wanted to do was weep.
My GP (general practitioner) helped. He suggested looking at it as if it were IBS (Irritable Bowel Syndrome). I elliminated most of the insoluble fibre from my diet, replacing my whole fruit and vegetables with cold-pressed juiced ones.I put soluble fibre (Benefiber) in the juice. I have also discovered (through trial and error) a dietary supplement containing lpha-galactosidase helps. I am now on almost my previous diet but I still keep the insiluble fibre low, take the soluble fibre and the supplment. I also now take Vtamin D because a recent blood test showed that was low
I mention the gut problems because I could not get any of my hospital doctors to take that seriously but it was ruining my day-to-day life. In the end I found my own way through. I think you may have to do the same.
I wish I could help with abvice about.the lynphoedma. Maybe someone else can.
As for exercise, I have a crosstrainer. I can't say that I use it enough, but it is a great bit of kit and the only exercise machine I have ever been able to use.
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- July 5, 2016 at 6:09 am
I finished my fourth Ipi infusion about one year ago. I had four infusions of 3 mg/kg. In the UK there are no maintence doses. I had tumours before the Ipi. Those tumours shrank and are, at the moment, not detectable by scan.
I absolutely understand about what it is like when everyone tells you that your body 'should' be reacting in one way and it seems to be on a completely different agenda. Maybe one day they will understand better what Ipi actually does other that persuading our T cells to attack melanoma cells.
I had ipi induced hypophysitis and now my anterior pituitary gland is non functional. Unlike you, I never took high-level steroids and was never hospitalised. The highest dose I have ever taken is 15 mg prednisolone per day.
I have hypothyroidism but that was not induced by prednisolone. It is because my thyroid is not receiving any messages from my anterior pituitary gland, I am on lexothyroxine.
My adrenal cortex does not work, again because of not receiving hormonal messages fron my anteripr pituitary gland, so I have to take a corostol replacement. I am taking low dose prednisolone.
My endocrine team think the damage to my anterior pituitary is permanent. They believe I will be on levothyroxine and a cortisol replacement (presently prednisolone) permanently.
If I were male, I would also be on testosterone If I were younger, they would be replacing my missing female reproductive hormones As I am female and post-menopausal, I am not.
Do you have an endrocrinologist? if not, can you find one to consult with?
My ipi side effects came back about three months after my final infusion. They were rash and diarrhoea. (My gut has never been the same since my second infusion of ipi.)
I sometimes think my ipi side effects have returned but with less force at other times during the last year. It had been extremely difficult to get my steroid dose down to a 'replacement level' (usually between 5 mg and 7.5 mg) per day. The lowest I can get it and stay functional is 8 mg. At the moment that is not enough and I am on 8.5 mg.
Luckily I am fine with prednisolone. I have refused to transition to hydrocortisone for now. Stabilty is all! I also have not done well on a split dose. I take my 8.5 mg as a single dose in the morning.
If I were on 30 mg predniolone per day, as you are, I would be bouncing off the walls and the ceiling. What about a slow taper heading for daily dose of 15 mg prednisolone (maybe split 10mg/5mg) and seeing what happens?
As I said, my gut has not been the same since I went on Ipi. I had almost constant diarrhoea and appalling wind. I could not take the standard treatment for wind because it interferred with levothyroxine uptake. I got to the stage where all I wanted to do was weep.
My GP (general practitioner) helped. He suggested looking at it as if it were IBS (Irritable Bowel Syndrome). I elliminated most of the insoluble fibre from my diet, replacing my whole fruit and vegetables with cold-pressed juiced ones.I put soluble fibre (Benefiber) in the juice. I have also discovered (through trial and error) a dietary supplement containing lpha-galactosidase helps. I am now on almost my previous diet but I still keep the insiluble fibre low, take the soluble fibre and the supplment. I also now take Vtamin D because a recent blood test showed that was low
I mention the gut problems because I could not get any of my hospital doctors to take that seriously but it was ruining my day-to-day life. In the end I found my own way through. I think you may have to do the same.
I wish I could help with abvice about.the lynphoedma. Maybe someone else can.
As for exercise, I have a crosstrainer. I can't say that I use it enough, but it is a great bit of kit and the only exercise machine I have ever been able to use.
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- July 5, 2016 at 9:24 pm
Thank you so much for the message!!
My oncologist has me taking the 30mg of hydrocortisone for an indefinite amount of time. My endocrinologist has me on Levothyroxine 25mcg. I guess my endocrine system is suppressed due to the extended period of taking 120mg of prednisone. It wrecked my body. At some point they are going to see if my adrenals are functional. I know all of my counts are low including testosterone.
My stomach is also a mess. I am always nauseated. My oncologist has given me Zophran which helps a little.
Wishing you the best!!
Brandt
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- July 6, 2016 at 5:46 am
Yes, I is really good to communicate with someone who has reacted to Yervory in a similar way to me. I have only found one other, 'Rod', who posted on this site when I was trying to find someone like me. He had long-standing (permanent?) anterior pituitary gland damage.
I hope your endocrine malfunction is temporary. If not, testosterone replacement might help.
30 mg hydrocortisone is not high. It is a 'replacement dose' for cortisol.
25 mcg levothyroxine is really low. (I am on 75 mcg and my husband, who happens to have genetically hypothyroidism, is on 150 mcg). That's hopeful! It implies some anterior pituitary function.
My endrocrinologist told me that people whose anterior pituitary gland recovers show (a) testesterone levels going back to normal [if they are male!], (b) thyroxine levels going back to normal and (c) cortisol level going back to normal.
It would be great if you do not have to be on hormone replacement permanently.
My two specialists have hinted repeatedly that reactions to Yervory that include turnning the recipient's T cells into anterior pituitary chomping machines means that they chomp those melanoma cells as well. They certainly chomped mine. So I hope the thought that those activated T cells have been marauding around your body looking for melanoma cells helps you get through.
Don't hesitate to get in touch again through this board, especially if your anterior pituitary stays dicey and you want to talk to someone dealing with that.
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- July 6, 2016 at 5:46 am
Yes, I is really good to communicate with someone who has reacted to Yervory in a similar way to me. I have only found one other, 'Rod', who posted on this site when I was trying to find someone like me. He had long-standing (permanent?) anterior pituitary gland damage.
I hope your endocrine malfunction is temporary. If not, testosterone replacement might help.
30 mg hydrocortisone is not high. It is a 'replacement dose' for cortisol.
25 mcg levothyroxine is really low. (I am on 75 mcg and my husband, who happens to have genetically hypothyroidism, is on 150 mcg). That's hopeful! It implies some anterior pituitary function.
My endrocrinologist told me that people whose anterior pituitary gland recovers show (a) testesterone levels going back to normal [if they are male!], (b) thyroxine levels going back to normal and (c) cortisol level going back to normal.
It would be great if you do not have to be on hormone replacement permanently.
My two specialists have hinted repeatedly that reactions to Yervory that include turnning the recipient's T cells into anterior pituitary chomping machines means that they chomp those melanoma cells as well. They certainly chomped mine. So I hope the thought that those activated T cells have been marauding around your body looking for melanoma cells helps you get through.
Don't hesitate to get in touch again through this board, especially if your anterior pituitary stays dicey and you want to talk to someone dealing with that.
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- July 6, 2016 at 5:46 am
Yes, I is really good to communicate with someone who has reacted to Yervory in a similar way to me. I have only found one other, 'Rod', who posted on this site when I was trying to find someone like me. He had long-standing (permanent?) anterior pituitary gland damage.
I hope your endocrine malfunction is temporary. If not, testosterone replacement might help.
30 mg hydrocortisone is not high. It is a 'replacement dose' for cortisol.
25 mcg levothyroxine is really low. (I am on 75 mcg and my husband, who happens to have genetically hypothyroidism, is on 150 mcg). That's hopeful! It implies some anterior pituitary function.
My endrocrinologist told me that people whose anterior pituitary gland recovers show (a) testesterone levels going back to normal [if they are male!], (b) thyroxine levels going back to normal and (c) cortisol level going back to normal.
It would be great if you do not have to be on hormone replacement permanently.
My two specialists have hinted repeatedly that reactions to Yervory that include turnning the recipient's T cells into anterior pituitary chomping machines means that they chomp those melanoma cells as well. They certainly chomped mine. So I hope the thought that those activated T cells have been marauding around your body looking for melanoma cells helps you get through.
Don't hesitate to get in touch again through this board, especially if your anterior pituitary stays dicey and you want to talk to someone dealing with that.
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- July 19, 2016 at 4:07 am
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
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- July 19, 2016 at 4:07 am
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
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- July 19, 2016 at 4:07 am
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
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- July 5, 2016 at 9:24 pm
Thank you so much for the message!!
My oncologist has me taking the 30mg of hydrocortisone for an indefinite amount of time. My endocrinologist has me on Levothyroxine 25mcg. I guess my endocrine system is suppressed due to the extended period of taking 120mg of prednisone. It wrecked my body. At some point they are going to see if my adrenals are functional. I know all of my counts are low including testosterone.
My stomach is also a mess. I am always nauseated. My oncologist has given me Zophran which helps a little.
Wishing you the best!!
Brandt
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- July 5, 2016 at 9:24 pm
Thank you so much for the message!!
My oncologist has me taking the 30mg of hydrocortisone for an indefinite amount of time. My endocrinologist has me on Levothyroxine 25mcg. I guess my endocrine system is suppressed due to the extended period of taking 120mg of prednisone. It wrecked my body. At some point they are going to see if my adrenals are functional. I know all of my counts are low including testosterone.
My stomach is also a mess. I am always nauseated. My oncologist has given me Zophran which helps a little.
Wishing you the best!!
Brandt
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