› Forums › General Melanoma Community › 1st Ipi dose on Friday
- This topic has 14 replies, 7 voices, and was last updated 13 years, 8 months ago by
TracyLee.
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- May 23, 2011 at 9:19 pm
Hi y'all,
Well, I'm going to be the first Ipi patient at my cancer center, and probably in all of DE! I figure the upstate folks get sent to Philly or Baltimore. I go in on Friday at 9 a.m. in Lewes.
God has blessed me with the ability to drive 20 minutes to my treatment, instead of almost 3 hours away.
Hi y'all,
Well, I'm going to be the first Ipi patient at my cancer center, and probably in all of DE! I figure the upstate folks get sent to Philly or Baltimore. I go in on Friday at 9 a.m. in Lewes.
God has blessed me with the ability to drive 20 minutes to my treatment, instead of almost 3 hours away.
Any suggestions or ideas, other than dress comfortably and take a good book? Both my husband and best friend would like to go with me, is that even necessary? (They've both missed a LOT of work just hauling me back and forth for four surgeries this year). I appreciate their support, but if I really won't need them, I'd like to "save" them for another time.
Posse, here we go. I told the physician's assistant doing my assessment, that I would have an excellent outcome, with no side effects, and set the gold standard for any folks who come after me!
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- May 23, 2011 at 11:30 pm
TracyLee,
Sorry, no suggestions, just sending lots of prayers and positive vibes your way. I have a good feeling bout Ipi!!!
Take Care.
Amy S. in Michigan
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- May 24, 2011 at 2:13 am
Hi TracyLee,
Ipi is most likely going to be given as an infusion through an IV although I had a mediport placed a week before I started my infusions. I also had a brain MRI, and PET/CT scans and labs, as I was part of a clinical trial. The dose is 3mg/kg, and you will need to give a urine sample as a pregnancy test is required each time before you have the dose and as the dose is weight dependent you will be weighed each visit also. In the infusion/chemo suite in my oncology department of the major medical center where I go, I am seated in a comfy recliner chair, with my mom or other support people seated comfortably across from me, and my blood pressure is taken every 15 minutes through the 90 minute infusion. First they will run an anti nausea med through and that takes time, and you are waiting for your batch of Ipi to come down from the oncology pharmacy..it has to be to made to the 3mg/kg specifications. I have on three occasions waited 2 hours for the drug to even come down to the infusion suite. The reason?? That many other chemo patients are also getting their drugs, including children….who are at the other end of the ward and they are always FIRST to get their chemo drugs. (Rightfully so too!) Finally the drug arrives and it is hooked up to your IV, mediport, whatever….the infusion starts and as I said my blood pressure was checked every 15 minutes, I was offered something to eat and drink, and covered with a heated blanket (oh how I love those)! I would often doze while the infusion was happening or chat with my mom/support persons and sometimes with other chemo patients…usually there were two of us chemo patients to a room or the little "pod" I guess I could call the room I was in as it was open. I was also required to wait a full hour after the infusion to make sure there were no adverse effects right after the infusion….each time I would wait the full hour. So 90 minutes for the infusion, 1 hour to wait and possibly waiting time for the ipi to come down to the floor…..so 2.5 hours minimum and its bound to be much longer. Often the chemo ward is packed with all kinds of patients getting chemo. I always brought a book, and some people bring their laptops.
As far as side effects, mine were minimal…some increased fatigue, some increased nausea, that often required the use of two anti nausea meds but out of 15 people doing the Ipi trial when I was, I was the only one who complained of nausea I was told. Oh well, thats me. I also had some white patches of skin, visible under a blacklight ( a good sign), and then I was also noticing my tumors starting to reabsorb after the third and fourth visit, with all tumors gone two weeks after the fourth infusion. I did notice some increase in inflammation around some of the tumors, especially the sub q's, but then that subsided. I had a PET/CT scan two weeks after my fourth dose and I had a lot of inflammation noted where all my tumors were and no new spots.12 weeks later all the inflammation spots on the PET/CT scan were gone (except where I have unhealed wounds).
I think that you should have a support person to spend the time with you, and also to drive you home. You dont know how you will feel, and you may just be really tired after a long afternoon of medical "stuff". Plus I am sure your husband and best friend want to "be there" as support as there is not much they can do for you except spend time with you and thats ok. Maybe cook dinner and clean your house too, lol!!!
I have written other long indepth posts of my experience with Ipi, just look for other posts by me, ok??
TracyLee, I am hoping that Ipi works for you like it did for me…I was a "Complete Responder"!
Vermont_Donna, stage 3a, NED
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- May 24, 2011 at 2:13 am
Hi TracyLee,
Ipi is most likely going to be given as an infusion through an IV although I had a mediport placed a week before I started my infusions. I also had a brain MRI, and PET/CT scans and labs, as I was part of a clinical trial. The dose is 3mg/kg, and you will need to give a urine sample as a pregnancy test is required each time before you have the dose and as the dose is weight dependent you will be weighed each visit also. In the infusion/chemo suite in my oncology department of the major medical center where I go, I am seated in a comfy recliner chair, with my mom or other support people seated comfortably across from me, and my blood pressure is taken every 15 minutes through the 90 minute infusion. First they will run an anti nausea med through and that takes time, and you are waiting for your batch of Ipi to come down from the oncology pharmacy..it has to be to made to the 3mg/kg specifications. I have on three occasions waited 2 hours for the drug to even come down to the infusion suite. The reason?? That many other chemo patients are also getting their drugs, including children….who are at the other end of the ward and they are always FIRST to get their chemo drugs. (Rightfully so too!) Finally the drug arrives and it is hooked up to your IV, mediport, whatever….the infusion starts and as I said my blood pressure was checked every 15 minutes, I was offered something to eat and drink, and covered with a heated blanket (oh how I love those)! I would often doze while the infusion was happening or chat with my mom/support persons and sometimes with other chemo patients…usually there were two of us chemo patients to a room or the little "pod" I guess I could call the room I was in as it was open. I was also required to wait a full hour after the infusion to make sure there were no adverse effects right after the infusion….each time I would wait the full hour. So 90 minutes for the infusion, 1 hour to wait and possibly waiting time for the ipi to come down to the floor…..so 2.5 hours minimum and its bound to be much longer. Often the chemo ward is packed with all kinds of patients getting chemo. I always brought a book, and some people bring their laptops.
As far as side effects, mine were minimal…some increased fatigue, some increased nausea, that often required the use of two anti nausea meds but out of 15 people doing the Ipi trial when I was, I was the only one who complained of nausea I was told. Oh well, thats me. I also had some white patches of skin, visible under a blacklight ( a good sign), and then I was also noticing my tumors starting to reabsorb after the third and fourth visit, with all tumors gone two weeks after the fourth infusion. I did notice some increase in inflammation around some of the tumors, especially the sub q's, but then that subsided. I had a PET/CT scan two weeks after my fourth dose and I had a lot of inflammation noted where all my tumors were and no new spots.12 weeks later all the inflammation spots on the PET/CT scan were gone (except where I have unhealed wounds).
I think that you should have a support person to spend the time with you, and also to drive you home. You dont know how you will feel, and you may just be really tired after a long afternoon of medical "stuff". Plus I am sure your husband and best friend want to "be there" as support as there is not much they can do for you except spend time with you and thats ok. Maybe cook dinner and clean your house too, lol!!!
I have written other long indepth posts of my experience with Ipi, just look for other posts by me, ok??
TracyLee, I am hoping that Ipi works for you like it did for me…I was a "Complete Responder"!
Vermont_Donna, stage 3a, NED
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- May 24, 2011 at 1:51 am
Just like to wish you the best of luck! I think that it is important that someone who can
also drive (if necessary) should go with you. It is good to keep in mind that there could
be a lot of time spent waiting for things to happen. Therefore, patience is required with
anything like this. Have they given you any idea about how long the appointment will take?God bless.
Frank from Australia
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- May 24, 2011 at 1:51 am
Just like to wish you the best of luck! I think that it is important that someone who can
also drive (if necessary) should go with you. It is good to keep in mind that there could
be a lot of time spent waiting for things to happen. Therefore, patience is required with
anything like this. Have they given you any idea about how long the appointment will take?God bless.
Frank from Australia
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- May 24, 2011 at 10:20 am
My experience varied slightly from Donna's. I wasn't given any anti-nausea meds prior to my infusions – perhaps as I wasn't prone to any nausea during any previous treatments over the years? Wait time varied although typically I was there about 3 hours from check in to check out. As Donna noted they'll monitor you. If you feel anything out of your normal – just tell the nurses. My husband came with me, for moral support to pass the time. Books or magazines helped. Medically I could have driven myself to and from the treatments without problem the hour long drive. See how yourespond to ipi after the first treatment with your support posse there – then adjust accordingly for the next ones? Best wishes for smooth sailing on Friday!
Rocco – Stage IV – Ipi responder
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- May 24, 2011 at 10:20 am
My experience varied slightly from Donna's. I wasn't given any anti-nausea meds prior to my infusions – perhaps as I wasn't prone to any nausea during any previous treatments over the years? Wait time varied although typically I was there about 3 hours from check in to check out. As Donna noted they'll monitor you. If you feel anything out of your normal – just tell the nurses. My husband came with me, for moral support to pass the time. Books or magazines helped. Medically I could have driven myself to and from the treatments without problem the hour long drive. See how yourespond to ipi after the first treatment with your support posse there – then adjust accordingly for the next ones? Best wishes for smooth sailing on Friday!
Rocco – Stage IV – Ipi responder
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- May 24, 2011 at 8:19 pm
Good luck with the ipi Tracy. I've heard good things about it. I haven't heard good things about interferon or DCIT.
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- May 24, 2011 at 8:19 pm
Good luck with the ipi Tracy. I've heard good things about it. I haven't heard good things about interferon or DCIT.
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- May 24, 2011 at 9:05 pm
Well gee, Tracy, you've already told the PA what's what, so this little bump in the road might as well bump on outta here!
Love your attitude. I'd still take my hubby and best friend along for the ride. You might not think it's necesary NOW, but come Friday after treatment, you might be mighty glad they're there. Despite your kick-butt attitude, you really don't know how you'll be feeling and I think they'll come in handy for support.
Plus, think about them. You might not think it's necesary, but they do and they'll feel better knowing they're with you. Will they really accomplish anything if they're at work? No. They'll be thinking about YOU and if you really DO need them, they'll kick themselves and YOU too for not being there. Count your blessings and count them as passengers and be grateful for them. Think of the folks that have to go this alone. Take them and loan them out while your getting your juice.
Posse ready. Praying for you, fearless leader!
Grace and peace,
Carol
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- May 25, 2011 at 11:42 am
Carol,
Thanks. I'm going to have my hubby and "spare" daughter (son's girlfriend) go with me. I plan to come back to work after this dose, but will probably try and schedule other doses in the late afternoon so I can go home and crash if needed. We are short at work on Friday, that's why I took the a.m. appointment.
I do think that my husband will feel better going. He wants to go on the first and third, and friends/family can cover the other two. So that's the plan.
Getting a little leery, seems like my neck is getting really lumpy, and I think they'll swell and hurt AFTER Ipi, while it starts to work. Got to plan for the worst, and expect the best!
I appreciate your prayers, oh mighty prayer warrior.
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- May 25, 2011 at 11:42 am
Carol,
Thanks. I'm going to have my hubby and "spare" daughter (son's girlfriend) go with me. I plan to come back to work after this dose, but will probably try and schedule other doses in the late afternoon so I can go home and crash if needed. We are short at work on Friday, that's why I took the a.m. appointment.
I do think that my husband will feel better going. He wants to go on the first and third, and friends/family can cover the other two. So that's the plan.
Getting a little leery, seems like my neck is getting really lumpy, and I think they'll swell and hurt AFTER Ipi, while it starts to work. Got to plan for the worst, and expect the best!
I appreciate your prayers, oh mighty prayer warrior.
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- May 24, 2011 at 9:05 pm
Well gee, Tracy, you've already told the PA what's what, so this little bump in the road might as well bump on outta here!
Love your attitude. I'd still take my hubby and best friend along for the ride. You might not think it's necesary NOW, but come Friday after treatment, you might be mighty glad they're there. Despite your kick-butt attitude, you really don't know how you'll be feeling and I think they'll come in handy for support.
Plus, think about them. You might not think it's necesary, but they do and they'll feel better knowing they're with you. Will they really accomplish anything if they're at work? No. They'll be thinking about YOU and if you really DO need them, they'll kick themselves and YOU too for not being there. Count your blessings and count them as passengers and be grateful for them. Think of the folks that have to go this alone. Take them and loan them out while your getting your juice.
Posse ready. Praying for you, fearless leader!
Grace and peace,
Carol
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