The information on this site is not intended or implied to be a substitute for professional medical advice, diagnosis or treatment. Content within the patient forum is user-generated and has not been reviewed by medical professionals. Other sections of the Melanoma Research Foundation website include information that has been reviewed by medical professionals as appropriate. All medical decisions should be made in consultation with your doctor or other qualified medical professional.

Round 2 ipi – 1st infusion

Forums Cutaneous Melanoma Community Round 2 ipi – 1st infusion

  • Post
    ValinMtl
    Participant

      Well back from Florida after enjoying the good weather, and, of course, where I suffered from scananxiety, nothing is easy.  In November, after completing round 1 with ipi, my CT scan had shown a growth in my left groin…WHATT??   Anyways, doctors believed the beast had metasticized there but thanks to suggestions (thanks fellow ipi warriors) I'm thinking might that lymph node was reacting, I have tried to stay calm.

      Well back from Florida after enjoying the good weather, and, of course, where I suffered from scananxiety, nothing is easy.  In November, after completing round 1 with ipi, my CT scan had shown a growth in my left groin…WHATT??   Anyways, doctors believed the beast had metasticized there but thanks to suggestions (thanks fellow ipi warriors) I'm thinking might that lymph node was reacting, I have tried to stay calm. So after completing the first round of 4 infusions, my cutaneous lesions were drying up and disappearing GREAT since I had over 100 now very few but during the past few months, I saw numerous sub-qs coming up, rather like boils on my right left.  Here's CT scan report and PET concurred.

      The lung bases appear unremarkable.
      The liver, gallbladder, bile ducts, adrenals, kidneys, pancreas, and spleen are unremarkable.
      No abnormality is noted in the bowel. No ascites. Unchanged post-operative scar in the right inguinal region. A right external iliacnode previously measuring 9 mm short axis, today measures 9 mm short axis. There has been interval increase in size of a left inguinal node which previously measured 2.6 x 3.0 cm. Today this measures 4.3 x 6.1 cm. No other enlarged abdominal or pelvic nodes are appreciated.
      No destructive lesion in the bones of the abdomen.
      IMPRESSION:
      Significant interval increase in size of a left inguinal lymph node, as described above. Otherwise no change. 

      So happy no observation in my organs, good reason to celebrate. The Pet scan showed a lot of activity in right leg, they now think it might possibly be good activity (but, of course they are not sure) and perhaps the left groin is reacting as well (but it also might be bad news)…short of a biopsy they can't tell.  They won't remove any lymph nodes in left since my my melanoma is systemic and needs to be solved via drugs rather than surgery so they are leaving it.  Well anyways all this news, enabled me to re-apply for 2nd round.  I am still hoping that left groin problem is a swollen lymph node or, at the very least, the ipi will attack it.

      Thanks to all the support of fellow ipi warriors especially, Jerry, Jim M, Jim B and Jim in Denver, and Donna.  Sharyn, I'm hoping you'll be joining me soon, I gave Michele a big smile for you when I had my first infusion.

      Here's how I feel:

      Round 1 :  Val 1  Mel 0 (down for a few counts)

      AND for Round 2 what I want : Val 2  Mel 0 (down forever)
       

      Val -Stage IV

      off to bed again..rather tired this time around
       

      Loading spinner
    Viewing 7 reply threads
    • Replies
        ValinMtl
        Participant

          Should mention last CT and PET scan was February after first in November.

          Loading spinner
          ValinMtl
          Participant

            Should mention last CT and PET scan was February after first in November.

            Loading spinner
            Jim M.
            Participant

              Congratulations Val on the lack of activity in your organs. I'm praying the activity in your leg and groin is due to Ipi working (your immune system working) to rid your body of mel. Thank you for your support as well!! We are in this together.

               God Bless,

               Jim M.

              Loading spinner
                Vermont_Donna
                Participant

                  Hi Val,

                  My last PET/CT scan, two weeks after ipi dose #4 showed inflammatroy response to the Ipi, and also show a new moderately hypermetabolic lymph node or two in the external iliac region…my oncologist said they would read that as response to the Ipi, and I will be rescanned in May and hopefully start round two or Ipi…but now with the FDA approval, not sure there is a round two of Ipi, and I know the clinical trial continues for a minimum of 30 days…I'll still be in my watch and wait. So lots of new questions. I am hoping that your leg is just showing the inflammatory response! You are back to winter here, should have brought some warm sunny weather from Florida!!

                  Hugs,

                  Vermont_Donna 

                  Loading spinner
                  ValinMtl
                  Participant

                    Thanks for this information Donna…it puts my overactive mind at rest a little.  Yep, not warm up here..Bill's setting up for his maple syrup run up near Tremblant, I'll join him in a few days.  Val

                    Loading spinner
                    ValinMtl
                    Participant

                      Thanks for this information Donna…it puts my overactive mind at rest a little.  Yep, not warm up here..Bill's setting up for his maple syrup run up near Tremblant, I'll join him in a few days.  Val

                      Loading spinner
                      Vermont_Donna
                      Participant

                        Hi Val,

                        My last PET/CT scan, two weeks after ipi dose #4 showed inflammatroy response to the Ipi, and also show a new moderately hypermetabolic lymph node or two in the external iliac region…my oncologist said they would read that as response to the Ipi, and I will be rescanned in May and hopefully start round two or Ipi…but now with the FDA approval, not sure there is a round two of Ipi, and I know the clinical trial continues for a minimum of 30 days…I'll still be in my watch and wait. So lots of new questions. I am hoping that your leg is just showing the inflammatory response! You are back to winter here, should have brought some warm sunny weather from Florida!!

                        Hugs,

                        Vermont_Donna 

                        Loading spinner
                      Jim M.
                      Participant

                        Congratulations Val on the lack of activity in your organs. I'm praying the activity in your leg and groin is due to Ipi working (your immune system working) to rid your body of mel. Thank you for your support as well!! We are in this together.

                         God Bless,

                         Jim M.

                        Loading spinner
                        LynnLuc
                        Participant

                          Very good news and yes the weather is awesome here in Florida…it has been high 80's and sometimes TOO warm for my liking!!

                          Loading spinner
                          LynnLuc
                          Participant

                            Very good news and yes the weather is awesome here in Florida…it has been high 80's and sometimes TOO warm for my liking!!

                            Loading spinner
                            Sharyn
                            Participant

                              Hi Val!

                              That all sounds great! And I'm delighted you're back in ipi. I had my post-craniotomy SRS on Wed, and I've received the CD of CT scans done in Montreal, and given them to the hospital so the radiologist can do a proper report with comparisons. Once that's done, Dr M will decide if I'm to restart ipi. Is your next infusion on Apr 14? I have a ticket for Mtl on the 13th, so hopefully I can convince them to have me start then, and we'll be infusion buddies. :>) I'll let you know as soon as I hear.

                              Hugs

                              Sharyn

                              Loading spinner
                                ValinMtl
                                Participant

                                  Yep, April 14th is my next one…Would be great if you can join me, I'm at 11:30 am.  Val

                                  Loading spinner
                                  ValinMtl
                                  Participant

                                    Yep, April 14th is my next one…Would be great if you can join me, I'm at 11:30 am.  Val

                                    Loading spinner
                                  Sharyn
                                  Participant

                                    Hi Val!

                                    That all sounds great! And I'm delighted you're back in ipi. I had my post-craniotomy SRS on Wed, and I've received the CD of CT scans done in Montreal, and given them to the hospital so the radiologist can do a proper report with comparisons. Once that's done, Dr M will decide if I'm to restart ipi. Is your next infusion on Apr 14? I have a ticket for Mtl on the 13th, so hopefully I can convince them to have me start then, and we'll be infusion buddies. :>) I'll let you know as soon as I hear.

                                    Hugs

                                    Sharyn

                                    Loading spinner
                                Viewing 7 reply threads
                                • You must be logged in to reply to this topic.
                                About the MRF Patient Forum

                                The MRF Patient Forum is the oldest and largest online community of people affected by melanoma. It is designed to provide peer support and information to caregivers, patients, family and friends. There is no better place to discuss different parts of your journey with this cancer and find the friends and support resources to make that journey more bearable.

                                The information on the forum is open and accessible to everyone. To add a new topic or to post a reply, you must be a registered user. Please note that you will be able to post both topics and replies anonymously even though you are logged in. All posts must abide by MRF posting policies.