› Forums › General Melanoma Community › Update: two weeks after first ipi/nivo infusion
- This topic has 12 replies, 3 voices, and was last updated 9 years, 4 months ago by
Hukill.
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- November 2, 2016 at 5:53 pm
Since her first infusion of ipi/nivo (and a quick trip to the ER for a urinary track infection), my mom has had nausea, indigestion, and bad fatigue (for the last few days she has slept the entire day, only waking up to eat). She has an extremely painful stage III hemorrhoid. Appetite is not good and everything tastes too sweet or salty even when it is bland, but she forces herself to eat when she can. For most of last month we had been eating a vegetable-heavy diet with no meat, carbs, or dairy. However, with the weather changes and loss of appetite she has been eating more normal foods–but even then she has no appetite. We still don't have red meat or dairy, but we now have chicken, fish, and whole grains in her diet. We use cannabinoid oils during the day to treat the pain, and a heavier Rick Simpson oil to help her sleep at night. The Rick Simpson oil has been pretty good and she now sleeps 6-7 hours through the night without waking up. She used to wake up every couple of hours from pain.
Currently, the majority of her pain comes from the hemorrhoid. We are trying to treat her hemorrhoid with some natural remedies (sitz baths, cold compress, aloe vera), but not much seems to work, which makes us think it might be caused or aggravated by the primary anal melanoma mass, which is in the same area.
Not feeling well has made her very fearful, especially since we have no way of knowing whether the disease is progressing or if treatment is working during the treatment period. We are trying to keep her positive, but it's tough when she feels physically unwell all of the time.
Second dose of ipi/nivo coming up on November 17. No scans until after all four doses, so mid-January?
On the insurance side, we are switching providers during open enrollment at her work as of January so that we are no longer tied to Kaiser. We are planning to go to Dr. Ribas at UCLA or Dr. Hamid at the Angeles Clinic. Her oncologist at Kaiser has not seen her since September and we really feel that he is not taking her case seriously, so we will be glad to find a doctor who has more of a sense of urgency about her situation.
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- November 2, 2016 at 9:25 pm
Glad to hear your mom was able to get seen outside of Kaiser.. it can be a tough process but so worth it.
Sorry she's having such a rough time though. I will also have my second Ipi/Nivo infusion on Nov 16. Nausea has come and gone for me the past week, today has been the worst. Makes me really tired, probably from not having much nutrition in my system.
I am assuming you've told her oncologist about her side effects? I know my onc has told me that if I am ever so tired that I am sleeping all day, then I need to let her know right away. Could be a thyroid issue that needs looking into.
Have you asked about getting lidocaine for your mom's hemmoroid? I had a different issue down there not long ago and was given a lidocaine cream to use to numb the area, worked so much better than the over the counter stuff.
Hope your mom starts to feel a bit better soon.
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- November 2, 2016 at 9:25 pm
Glad to hear your mom was able to get seen outside of Kaiser.. it can be a tough process but so worth it.
Sorry she's having such a rough time though. I will also have my second Ipi/Nivo infusion on Nov 16. Nausea has come and gone for me the past week, today has been the worst. Makes me really tired, probably from not having much nutrition in my system.
I am assuming you've told her oncologist about her side effects? I know my onc has told me that if I am ever so tired that I am sleeping all day, then I need to let her know right away. Could be a thyroid issue that needs looking into.
Have you asked about getting lidocaine for your mom's hemmoroid? I had a different issue down there not long ago and was given a lidocaine cream to use to numb the area, worked so much better than the over the counter stuff.
Hope your mom starts to feel a bit better soon.
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- November 2, 2016 at 9:25 pm
Glad to hear your mom was able to get seen outside of Kaiser.. it can be a tough process but so worth it.
Sorry she's having such a rough time though. I will also have my second Ipi/Nivo infusion on Nov 16. Nausea has come and gone for me the past week, today has been the worst. Makes me really tired, probably from not having much nutrition in my system.
I am assuming you've told her oncologist about her side effects? I know my onc has told me that if I am ever so tired that I am sleeping all day, then I need to let her know right away. Could be a thyroid issue that needs looking into.
Have you asked about getting lidocaine for your mom's hemmoroid? I had a different issue down there not long ago and was given a lidocaine cream to use to numb the area, worked so much better than the over the counter stuff.
Hope your mom starts to feel a bit better soon.
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- November 2, 2016 at 11:01 pm
Thank you for bringing that to my attention. I just talked to the Kaiser infusion nurse about it, but they seemed unconcerned since she has only had one dose of the treatment. I left a message for her oncologist at Kaiser, but have not heard back yet either. I am now worried that either they are not taking her symptoms seriously or they don't know what to look for. This also confirms that our decision to leave Kaiser was the right one.
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- November 2, 2016 at 11:01 pm
Thank you for bringing that to my attention. I just talked to the Kaiser infusion nurse about it, but they seemed unconcerned since she has only had one dose of the treatment. I left a message for her oncologist at Kaiser, but have not heard back yet either. I am now worried that either they are not taking her symptoms seriously or they don't know what to look for. This also confirms that our decision to leave Kaiser was the right one.
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- November 2, 2016 at 11:01 pm
Thank you for bringing that to my attention. I just talked to the Kaiser infusion nurse about it, but they seemed unconcerned since she has only had one dose of the treatment. I left a message for her oncologist at Kaiser, but have not heard back yet either. I am now worried that either they are not taking her symptoms seriously or they don't know what to look for. This also confirms that our decision to leave Kaiser was the right one.
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- November 3, 2016 at 12:08 am
Are you in contact with a specialist outside of Kaiser? If so, I'd try to call them and get their opinion about your mom's symptoms since they will know what to look for and could then speak to the Kaiser oncologist to get them informed about the things they need to be aware of that could be serious.
My heart goes out to you and your mom, this time last year I was going through my own Kaiser battle.. when January 1st came I nearly did a happy dance knowing I wouldn't have to jump through anymore hoops to get heard and cared for properly.
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- November 3, 2016 at 12:08 am
Are you in contact with a specialist outside of Kaiser? If so, I'd try to call them and get their opinion about your mom's symptoms since they will know what to look for and could then speak to the Kaiser oncologist to get them informed about the things they need to be aware of that could be serious.
My heart goes out to you and your mom, this time last year I was going through my own Kaiser battle.. when January 1st came I nearly did a happy dance knowing I wouldn't have to jump through anymore hoops to get heard and cared for properly.
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- November 3, 2016 at 12:08 am
Are you in contact with a specialist outside of Kaiser? If so, I'd try to call them and get their opinion about your mom's symptoms since they will know what to look for and could then speak to the Kaiser oncologist to get them informed about the things they need to be aware of that could be serious.
My heart goes out to you and your mom, this time last year I was going through my own Kaiser battle.. when January 1st came I nearly did a happy dance knowing I wouldn't have to jump through anymore hoops to get heard and cared for properly.
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- November 3, 2016 at 8:12 pm
I have had 4 doses of the combo and get my third dose of opdivo next week. I had a lot of fatigue during the first 2 or 3 doses then it got better. I do get a few days of fatigue now after each infusion. I have had the sweet and salt thing going on for about 7 weeks now with some things being either to sweet or salty to eat. This is going to sound wierd but your mother should be happy she is having these side effects, it means her body is reacting to the drugs. The second week after my first dose I got the rash and was as happy as could be. My 14 week scan, started with 7 mets in my lungs, had 5 gone or to small to see and the other 2 were down from over 1 cm to 2.5mm and 2mm. I did lose 28 pounds in the first 6 weeks as I had to make myself eat also but I needed to lose those pounds and told everyone I found a new diet, the melamoma diet. All I can say is remind your mom if the drugs are making her feel bad imagine what it is doing to the melanoma. Good luck and God bless your family.
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- November 3, 2016 at 8:12 pm
I have had 4 doses of the combo and get my third dose of opdivo next week. I had a lot of fatigue during the first 2 or 3 doses then it got better. I do get a few days of fatigue now after each infusion. I have had the sweet and salt thing going on for about 7 weeks now with some things being either to sweet or salty to eat. This is going to sound wierd but your mother should be happy she is having these side effects, it means her body is reacting to the drugs. The second week after my first dose I got the rash and was as happy as could be. My 14 week scan, started with 7 mets in my lungs, had 5 gone or to small to see and the other 2 were down from over 1 cm to 2.5mm and 2mm. I did lose 28 pounds in the first 6 weeks as I had to make myself eat also but I needed to lose those pounds and told everyone I found a new diet, the melamoma diet. All I can say is remind your mom if the drugs are making her feel bad imagine what it is doing to the melanoma. Good luck and God bless your family.
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- November 3, 2016 at 8:12 pm
I have had 4 doses of the combo and get my third dose of opdivo next week. I had a lot of fatigue during the first 2 or 3 doses then it got better. I do get a few days of fatigue now after each infusion. I have had the sweet and salt thing going on for about 7 weeks now with some things being either to sweet or salty to eat. This is going to sound wierd but your mother should be happy she is having these side effects, it means her body is reacting to the drugs. The second week after my first dose I got the rash and was as happy as could be. My 14 week scan, started with 7 mets in my lungs, had 5 gone or to small to see and the other 2 were down from over 1 cm to 2.5mm and 2mm. I did lose 28 pounds in the first 6 weeks as I had to make myself eat also but I needed to lose those pounds and told everyone I found a new diet, the melamoma diet. All I can say is remind your mom if the drugs are making her feel bad imagine what it is doing to the melanoma. Good luck and God bless your family.
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