› Forums › General Melanoma Community › Ipilimumab for the first time
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dochas.
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- December 21, 2016 at 10:28 pm
Hi everyone
i have been lurking for a little while, reading your stories.
i am writing on behalf of my dad, who first started feeling ill in November, was then diagnosed with metastatic melanoma on 7 December and started treatment with his first infusion of ipilimumab last Friday, 16th.
we are all very worried but at the same time relieved that some treatment has started.
however he is so exhausted, a fatigue far beyond anything he has ever known, and I wondered if anyone could share from their experiences whether this possibly might improve over the next few weeks before his second infusion. He is trying to stay so positive but this fatigue is really getting to him. So looking for some hope.
thank you x
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- December 21, 2016 at 11:17 pm
Hi,
Fatigue can be related to the disease, worry and stress and or treatment., so it is really hard to figure out why you are feeling so fatigued at any point .. and certainly difficult to predict what will happen next. It is just one of the uncertainties we have to deal with. These drugs seem to give such a wide range of side effects to different people that predicting the impact on an individual is not yet possible. The common side effects seem to come in the following order in general- rash, gastro then endocrine/ raised liver enzymes but you may have minimal side effects and sail through or need steroids to manage problems.
The advice I was given was to try to pace activities and not overtire and do too much on a good day. I find days at the hospital pretty tiriing and stressful due to the travel, endless waiting around, general anxiety about the treatment, possible side effects etc. Friday is not so very long ago …
Do you know if your Dad might be anemic ?The team will do lots of bloods before the next infusion which can point to possible causes but if this fatigue is so extreme it is worth a call to report it to the oncology team- so they are aware .Occassionally ipi can cause problems with thyroid hormones etc but this would not normally be expected so early in treatment.
Hope things settle down soon- the shock of diagnosis and treatment decisions is a tough time…both for the patient and the family.
Best of wishes to you all,
Deb
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- December 21, 2016 at 11:17 pm
Hi,
Fatigue can be related to the disease, worry and stress and or treatment., so it is really hard to figure out why you are feeling so fatigued at any point .. and certainly difficult to predict what will happen next. It is just one of the uncertainties we have to deal with. These drugs seem to give such a wide range of side effects to different people that predicting the impact on an individual is not yet possible. The common side effects seem to come in the following order in general- rash, gastro then endocrine/ raised liver enzymes but you may have minimal side effects and sail through or need steroids to manage problems.
The advice I was given was to try to pace activities and not overtire and do too much on a good day. I find days at the hospital pretty tiriing and stressful due to the travel, endless waiting around, general anxiety about the treatment, possible side effects etc. Friday is not so very long ago …
Do you know if your Dad might be anemic ?The team will do lots of bloods before the next infusion which can point to possible causes but if this fatigue is so extreme it is worth a call to report it to the oncology team- so they are aware .Occassionally ipi can cause problems with thyroid hormones etc but this would not normally be expected so early in treatment.
Hope things settle down soon- the shock of diagnosis and treatment decisions is a tough time…both for the patient and the family.
Best of wishes to you all,
Deb
-
- December 21, 2016 at 11:17 pm
Hi,
Fatigue can be related to the disease, worry and stress and or treatment., so it is really hard to figure out why you are feeling so fatigued at any point .. and certainly difficult to predict what will happen next. It is just one of the uncertainties we have to deal with. These drugs seem to give such a wide range of side effects to different people that predicting the impact on an individual is not yet possible. The common side effects seem to come in the following order in general- rash, gastro then endocrine/ raised liver enzymes but you may have minimal side effects and sail through or need steroids to manage problems.
The advice I was given was to try to pace activities and not overtire and do too much on a good day. I find days at the hospital pretty tiriing and stressful due to the travel, endless waiting around, general anxiety about the treatment, possible side effects etc. Friday is not so very long ago …
Do you know if your Dad might be anemic ?The team will do lots of bloods before the next infusion which can point to possible causes but if this fatigue is so extreme it is worth a call to report it to the oncology team- so they are aware .Occassionally ipi can cause problems with thyroid hormones etc but this would not normally be expected so early in treatment.
Hope things settle down soon- the shock of diagnosis and treatment decisions is a tough time…both for the patient and the family.
Best of wishes to you all,
Deb
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- December 21, 2016 at 11:57 pm
I started on the ipi/nivo combo in July. I had fatigue for the first 4 weeks or so (doses 3 weeks apart) but it went away. I would still work a couple days a week and lost 28 pounds the first month, was not hungry and had to make myself eat. My dose was 3 mg per kilo of weight. Your dad maybe on a higher dose. I had very positive scan at 9 weeks and at 14 weeks 3 of 7 mets were gone or to small to see, 2 were down to 2mm and 2.5mm. The other 2 were down to 1cm from 1.4 and 1.5. All 7 were in my lungs. I would look at it as his body is reacting which is good. The first week I got the rash on both arms and was happy as could be. I have had at least 1 side effect of some sort since the first week.
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- December 21, 2016 at 11:57 pm
I started on the ipi/nivo combo in July. I had fatigue for the first 4 weeks or so (doses 3 weeks apart) but it went away. I would still work a couple days a week and lost 28 pounds the first month, was not hungry and had to make myself eat. My dose was 3 mg per kilo of weight. Your dad maybe on a higher dose. I had very positive scan at 9 weeks and at 14 weeks 3 of 7 mets were gone or to small to see, 2 were down to 2mm and 2.5mm. The other 2 were down to 1cm from 1.4 and 1.5. All 7 were in my lungs. I would look at it as his body is reacting which is good. The first week I got the rash on both arms and was happy as could be. I have had at least 1 side effect of some sort since the first week.
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- December 21, 2016 at 11:57 pm
I started on the ipi/nivo combo in July. I had fatigue for the first 4 weeks or so (doses 3 weeks apart) but it went away. I would still work a couple days a week and lost 28 pounds the first month, was not hungry and had to make myself eat. My dose was 3 mg per kilo of weight. Your dad maybe on a higher dose. I had very positive scan at 9 weeks and at 14 weeks 3 of 7 mets were gone or to small to see, 2 were down to 2mm and 2.5mm. The other 2 were down to 1cm from 1.4 and 1.5. All 7 were in my lungs. I would look at it as his body is reacting which is good. The first week I got the rash on both arms and was happy as could be. I have had at least 1 side effect of some sort since the first week.
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- December 22, 2016 at 12:48 am
Thank you both for your replies. You are right, we need to be patient, I can just see how it's getting to him and was hoping to learn it might improve. But you are right also, it is so subjective.
His spread is to his liver and bones. Since the infusion he has had a lot of pain in bones and I have been hoping that is the treatment targeting the tumour growth. Aside from fatigue his other main issue is loss of appetite and/or avoiding food as feeling nauseous. Oh and breathlessness.
I am hoping these are side effects of the treatment, not a worsening of the illness.
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- December 22, 2016 at 7:29 am
Hello again,
My problem is liver too. Had nauzsea and loss of appetite before and after starting IPI. Had anti nausea meds . but only turned down the volume rather than sorting the problem..liver area was tender for a week or two but subsided. Avoided rich or fatty food as my brain couldn't handle the idea .. Ate salads fruit and yoghurts as this felt better. Also little and often.. But still lost weight .
The breathlessness could be a sign of inflammation in the lungs… Which is another one of the known IPI side effects….but if it is..your medical team needs to monitor and your Dad needs to tell them. These are powerful drugs and as someone else explained.. We are aiming for the goldilocks zone… Where the immune system is not too cold and not too hot… But just right so it attacks the melanoma but isn't over heated so that the rest of us is injured in the process. I keep being told communication is the key to successful management of treatment and side effects so would encourage you to report in the symptoms and let your Dads team then decide what to do next. Did the breathlessness start after Friday ? Can you explain what is now difficult ? Climbing stairs etc ? Keeping a note can help pinpoint changes and new developments and side effects can be managed but the docs will only increase monitoring and take action if they know there is a problem.
If it is bothering Dad enough to have you posting here..it is worth telling his oncologist about it . Hope things settle soon
Deb
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- December 22, 2016 at 7:29 am
Hello again,
My problem is liver too. Had nauzsea and loss of appetite before and after starting IPI. Had anti nausea meds . but only turned down the volume rather than sorting the problem..liver area was tender for a week or two but subsided. Avoided rich or fatty food as my brain couldn't handle the idea .. Ate salads fruit and yoghurts as this felt better. Also little and often.. But still lost weight .
The breathlessness could be a sign of inflammation in the lungs… Which is another one of the known IPI side effects….but if it is..your medical team needs to monitor and your Dad needs to tell them. These are powerful drugs and as someone else explained.. We are aiming for the goldilocks zone… Where the immune system is not too cold and not too hot… But just right so it attacks the melanoma but isn't over heated so that the rest of us is injured in the process. I keep being told communication is the key to successful management of treatment and side effects so would encourage you to report in the symptoms and let your Dads team then decide what to do next. Did the breathlessness start after Friday ? Can you explain what is now difficult ? Climbing stairs etc ? Keeping a note can help pinpoint changes and new developments and side effects can be managed but the docs will only increase monitoring and take action if they know there is a problem.
If it is bothering Dad enough to have you posting here..it is worth telling his oncologist about it . Hope things settle soon
Deb
-
- December 22, 2016 at 7:29 am
Hello again,
My problem is liver too. Had nauzsea and loss of appetite before and after starting IPI. Had anti nausea meds . but only turned down the volume rather than sorting the problem..liver area was tender for a week or two but subsided. Avoided rich or fatty food as my brain couldn't handle the idea .. Ate salads fruit and yoghurts as this felt better. Also little and often.. But still lost weight .
The breathlessness could be a sign of inflammation in the lungs… Which is another one of the known IPI side effects….but if it is..your medical team needs to monitor and your Dad needs to tell them. These are powerful drugs and as someone else explained.. We are aiming for the goldilocks zone… Where the immune system is not too cold and not too hot… But just right so it attacks the melanoma but isn't over heated so that the rest of us is injured in the process. I keep being told communication is the key to successful management of treatment and side effects so would encourage you to report in the symptoms and let your Dads team then decide what to do next. Did the breathlessness start after Friday ? Can you explain what is now difficult ? Climbing stairs etc ? Keeping a note can help pinpoint changes and new developments and side effects can be managed but the docs will only increase monitoring and take action if they know there is a problem.
If it is bothering Dad enough to have you posting here..it is worth telling his oncologist about it . Hope things settle soon
Deb
-
- December 22, 2016 at 12:48 am
Thank you both for your replies. You are right, we need to be patient, I can just see how it's getting to him and was hoping to learn it might improve. But you are right also, it is so subjective.
His spread is to his liver and bones. Since the infusion he has had a lot of pain in bones and I have been hoping that is the treatment targeting the tumour growth. Aside from fatigue his other main issue is loss of appetite and/or avoiding food as feeling nauseous. Oh and breathlessness.
I am hoping these are side effects of the treatment, not a worsening of the illness.
-
- December 22, 2016 at 12:48 am
Thank you both for your replies. You are right, we need to be patient, I can just see how it's getting to him and was hoping to learn it might improve. But you are right also, it is so subjective.
His spread is to his liver and bones. Since the infusion he has had a lot of pain in bones and I have been hoping that is the treatment targeting the tumour growth. Aside from fatigue his other main issue is loss of appetite and/or avoiding food as feeling nauseous. Oh and breathlessness.
I am hoping these are side effects of the treatment, not a worsening of the illness.
-
- December 22, 2016 at 3:21 pm
Hello,
I agree with the others to let the oncologist know and let him calm your fears or take action whichever is needed.
Secondly you never mentioned Dad's age. Older individuals sometimes have more fatigue just with normal life and this only adds to it. Also there could be some depression associated with it since he isn't feeling well and it is holiday time or just for the fact of the cancer getting him down.
My husband was 57 when he found out he had melanoma and he was 59 when he started Ipi and he was stage IV with it in the liver, lungs, and an unresectable tumor pushing on the cervical spine up at C1-C2. He started Ipi in March of 2011 at 10mg/kg and became NED in July 2012. So he has been NED for 4.5 years. If you would like to read more check out his profile.
Also if you fill out the profile part of this then the age of the patient and where the cancer is located would be filled in and others would not have to ask this with future posts.
I hope he is being seen by a melanoma specialist as well as they are the best for monitering the side effects.
Hoping for the best for your dad and prayers for him and the family as well.
Judy (loving wife of Gene Stage IV and now NED for 4.5 years thanks to IPI)
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- December 22, 2016 at 3:21 pm
Hello,
I agree with the others to let the oncologist know and let him calm your fears or take action whichever is needed.
Secondly you never mentioned Dad's age. Older individuals sometimes have more fatigue just with normal life and this only adds to it. Also there could be some depression associated with it since he isn't feeling well and it is holiday time or just for the fact of the cancer getting him down.
My husband was 57 when he found out he had melanoma and he was 59 when he started Ipi and he was stage IV with it in the liver, lungs, and an unresectable tumor pushing on the cervical spine up at C1-C2. He started Ipi in March of 2011 at 10mg/kg and became NED in July 2012. So he has been NED for 4.5 years. If you would like to read more check out his profile.
Also if you fill out the profile part of this then the age of the patient and where the cancer is located would be filled in and others would not have to ask this with future posts.
I hope he is being seen by a melanoma specialist as well as they are the best for monitering the side effects.
Hoping for the best for your dad and prayers for him and the family as well.
Judy (loving wife of Gene Stage IV and now NED for 4.5 years thanks to IPI)
-
- December 22, 2016 at 3:21 pm
Hello,
I agree with the others to let the oncologist know and let him calm your fears or take action whichever is needed.
Secondly you never mentioned Dad's age. Older individuals sometimes have more fatigue just with normal life and this only adds to it. Also there could be some depression associated with it since he isn't feeling well and it is holiday time or just for the fact of the cancer getting him down.
My husband was 57 when he found out he had melanoma and he was 59 when he started Ipi and he was stage IV with it in the liver, lungs, and an unresectable tumor pushing on the cervical spine up at C1-C2. He started Ipi in March of 2011 at 10mg/kg and became NED in July 2012. So he has been NED for 4.5 years. If you would like to read more check out his profile.
Also if you fill out the profile part of this then the age of the patient and where the cancer is located would be filled in and others would not have to ask this with future posts.
I hope he is being seen by a melanoma specialist as well as they are the best for monitering the side effects.
Hoping for the best for your dad and prayers for him and the family as well.
Judy (loving wife of Gene Stage IV and now NED for 4.5 years thanks to IPI)
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