IPI Response Questions

This topic has 8 replies, 4 voices, and was last updated 12 years, 7 months ago by devonfh.

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- September 13, 2011 at 1:23 am
- Quote
emilypen
Participant
Hi All,

My hubby had his 4th IPI infusion last Thursday. We've noticed that typically 7-10 days after an infusion he gets tired, achy and his sub q mets swell up, get sore to the touch and very hot. However none of them have completely disappeared. A few have gotten smaller, but every day it seems that more are popping up across his torso and back.

Now on day 4 after the infusion, he's incredibly achy, sore and fatigued. He says everywhere hurts and we've had to up his morphine to help him sleep.

Hi All,

My hubby had his 4th IPI infusion last Thursday. We've noticed that typically 7-10 days after an infusion he gets tired, achy and his sub q mets swell up, get sore to the touch and very hot. However none of them have completely disappeared. A few have gotten smaller, but every day it seems that more are popping up across his torso and back.

Now on day 4 after the infusion, he's incredibly achy, sore and fatigued. He says everywhere hurts and we've had to up his morphine to help him sleep.

He also has bone mets, but he says the pain is not the same as the bone mets pain, this is more sore and achy rather than sharp and overwhelming.

Just wondering if anyone else has had a similar response? Our onc says he hasn't seen it before but is keeping an open mind.

Also wondering if it's more likely that mets in the interior of the body rather than the fatty areas might react before the sub q's?

And lastly, our onc also said that this may be the last treatment available for him, as if IPI does not work he may be too sick to qualify for another clinical trial.

We've already tried;

Dacarbazine

MEK/P13k

BRAF inhibitor

IPI

Radiation

I've mentioned trying IL-2 after IPI , but because of the toxicity our onc is concerned he may not qualify for the treatment.

Any suggestions are welcome.

thanks

Em

Viewing 7 reply threads

Replies

- - September 13, 2011 at 4:51 am
  - Quote
  FormerCaregiver
  Participant
  Em, I am very sorry to read of your husband's situation. I checked the info in his profile and see that he has mets in his spine, chest and brain. He has had surgery on his spine and radiation treatment in March. More recently, he has WBR for brain mets.
  
  I feel that it is time for at least a CT scan, as we need to have a better idea of what happening with the mets and if there are any new ones that could be causing problems.
  
  The problem with systemic treatments like ipi is that they can be significantly affected by the tumour burden.
  
  As toxicity is a concern, I wonder if your husband could try something like GM-CSF (Leukine) and/or a vaccine trial?
  
  Hope this helps.
  
  Frank from Australia
- - September 13, 2011 at 4:51 am
  - Quote
  FormerCaregiver
  Participant
  Em, I am very sorry to read of your husband's situation. I checked the info in his profile and see that he has mets in his spine, chest and brain. He has had surgery on his spine and radiation treatment in March. More recently, he has WBR for brain mets.
  
  I feel that it is time for at least a CT scan, as we need to have a better idea of what happening with the mets and if there are any new ones that could be causing problems.
  
  The problem with systemic treatments like ipi is that they can be significantly affected by the tumour burden.
  
  As toxicity is a concern, I wonder if your husband could try something like GM-CSF (Leukine) and/or a vaccine trial?
  
  Hope this helps.
  
  Frank from Australia
- - September 13, 2011 at 1:49 pm
  - Quote
  jim Breitfeller
  Participant
  Em, based on your description, Yervoy may be working but not enough T-cells to finnish the job. There may be a shortage of IL-2 in your husband's body. IL-2 is needed for the function and survival of the T-cells.
  
  But there is a competion for the Il-2 between the TREG cells and the T-cells.
  
  If the tregs are in close proximity of the T-cells, the Tregs wins out and the immune response is muted or even cancelled.
  
  This is called a IL-2 sink.
  
  If there is not enough Il-2, the CD8 T-cells can't become activated.
  
  I would suggest asking the oncologist if the patient qualifies for HD IL-2 or can they lower the dosage to accommodate him/her.
- - September 13, 2011 at 1:49 pm
  - Quote
  jim Breitfeller
  Participant
  Em, based on your description, Yervoy may be working but not enough T-cells to finnish the job. There may be a shortage of IL-2 in your husband's body. IL-2 is needed for the function and survival of the T-cells.
  
  But there is a competion for the Il-2 between the TREG cells and the T-cells.
  
  If the tregs are in close proximity of the T-cells, the Tregs wins out and the immune response is muted or even cancelled.
  
  This is called a IL-2 sink.
  
  If there is not enough Il-2, the CD8 T-cells can't become activated.
  
  I would suggest asking the oncologist if the patient qualifies for HD IL-2 or can they lower the dosage to accommodate him/her.
- - September 13, 2011 at 5:29 pm
  - Quote
  JerryfromFauq
  Participant
  One question I have, Is your Oncologist and experienced IL-2 Oncologist? Many Oncologists that are not highly experienced with IL-2 are scared of it, in spite of it's successes.
- - September 13, 2011 at 5:29 pm
  - Quote
  JerryfromFauq
  Participant
  One question I have, Is your Oncologist and experienced IL-2 Oncologist? Many Oncologists that are not highly experienced with IL-2 are scared of it, in spite of it's successes.
- - September 16, 2011 at 12:20 am
  - Quote
  devonfh
  Participant
  I am a caregiver to someone that just had his second dose of ipi one week ago. Same symptoms you describe but also extreme swelling of the abdomen and blood clot. What other symptoms? Did they get better with time?
- - September 16, 2011 at 12:20 am
  - Quote
  devonfh
  Participant
  I am a caregiver to someone that just had his second dose of ipi one week ago. Same symptoms you describe but also extreme swelling of the abdomen and blood clot. What other symptoms? Did they get better with time?