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treatment options? failed keytruda (5 injections), and likely ippi and nivo (2 so far)-Acral Lentiginous

Forums Cutaneous Melanoma Community treatment options? failed keytruda (5 injections), and likely ippi and nivo (2 so far)-Acral Lentiginous

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      My mom was diagnosed with acral lentiginous melanoma on her left foot in June 2016, stage 3c. It was Breslow 4, ulcerated. The sentinel lymph node was positive. The wound originally appeared in January 2016, but was not diagnosed until June.
      The PET scan that summer looked clean. We elected to do watch and wait on the lymph nodes, recommended by Dr. Coit at MSK.
      In end of October 2016, mom detected palpable nodes in the left groin. The CT scan showed positive lymph nodes in left groin, and the lymph node biopsy with ultrasound confirmed melanoma in the node. The technician poked the node 4 times (twice with fine needle, and twice with core needle).
      Mom underwent the lymph node dissection surgery 11/22/2016. They removed both superficial and deep lymph nodes from left groin, since the cloquet's node separating superficial and deep showed positive during the surgery. Out of 9 superficial nodes examined, 3 were positive for melanoma; plus the cloquet node; plus 3 were positive out of 12 examined pelvic lymph nodes. Extra-capsular extension was identified in one superficial and in cloquet node.
      In January 2017, the CT scan showed a small met in the illiac bone, and she was put on Keytruda.
      On March 27, 2017, after 3 Keytruda injections, the PET scan showed few new bone mets as well as small pulmonary nodes:
      -Right proximal femoral shaft, SUV 3.9
      -Left femoral neck, SUV 5.0
      -Right clavicle, SUV 2.9
      -Possible focal uptake in T3 vertebral body, SUV 3.2

      We decided to give Keytruda more chance to work and had two more injections every 3 weeks.

      In May 2017, mom suddenly felt she couldnt step on her left leg, and the PET scan on May 19, 2017 showed increased malignancy in bone, liver, and lungs:
      Marked increase in FDG avid osseous metastases:
      -Left femoral neck expansile lytic lesion [SUV 12.9, previously 4.9]
      associated with cortical disruption
      -Right proximal femur [SUV 18.2, previously 3.9]
      -New left posterior iliac bone lesions [SUV 7.2 and 8.9]
      -New C3 vertebral body[SUV 8.6]
      -Right proximal clavicle [SUV 8.2, previously 2.9]
      New mild T11 compression fracture (less than 25 %)
      Increase in uptake extent of FDG avid right anterior abdominal
      wall/intramuscular soft tissue [SUV 4.0]
      IMPRESSION: Since March 27, 2017,
      Increased malignancy including osseous, pulmonary, hepatic, and abdominal
      wall metastases. Left hip metastasis at risk for pathologic fracture.

      So mom was called for an emergency left hip replacement surgery, that was done on May 22, 2017.

      Subsequently, mom entered an Ippi/Nivo combo plus Radiation clinical trial, recommended by Dr. Wolchok, and had 2 injections of Ippi/Nivo every 3 weeks (on 6/07/2017 and 6/28/2017), as well as 10 radiation sessions to T3 and T12 of her spine every day starting on 6/22/2017.

      Before the last radiation treatment on 7/5/17 , she started experiencing persistent nausea and vomiting. Also severe burning in her esophagus, which was burnt as a side effect to the radiation to the spine. She had difficulty swallowing anything because of the esophagitis, as well as vomiting.

      On July 6, 2017, she had a PET scan simulation done to evaluate for radiation to the right clavicle bone, and the scan revealed further progression:

      "Increased hypermetabolic osseous metastatic disease. For example:
      * C2 vertebra, SUV 9.1, previously 4.8
      * Right proximalclavicle, SUV 8.2, previously 8.2, increased in extent
      * Right proximal humeral diaphysis, SUV 6.8, previously 2.6
      * Left posterior iliac bone, SUV 10.5, previously SUV 8.9, now more
      extensive left acetabulum, SUV 7.3, new
      * Right mid femoraldiaphysis, SUV 3.4, new
      Interval left hip arthroplasty with longstem femoral component with
      persistent uptake at the femoral neck, correlating with a site of known
      Overlap of osseous activity with the spinal cord at multiple levels
      including at T3 and T12, correlating with known epidural extension of
      New mild compression fracture at the T12 level with less than 25 percent
      vertebral height loss.
      Decreased uptake within a right anterior abdominal wall soft
      tissue/muscular nodule, SUV 2.2, previously 4.0.
      1. Since May 19, 2017, increased malignancy including pulmonary, hepatic
      and osseous metastatic disease. Increased pulmonary and nodal disease
      since CT of June 5, 2017.
      2. New left common iliac and left inguinal nodal metastases.
      3. Overlap of activity from osseous metastatic disease with the spinal
      cord consistent with known epidural disease better assessed on prior MRI
      4. New mild compression fracture at the T12 level, probably unchanged
      since CT of June 5, 2017.
      5. New diffuse gastric uptake, possibly inflammatory. Attention on
      follow-up imaging to ensure resolution."

      She got into MSK urgent care center with an episode of atrial fibrillation on July 11, 2017. They also did a CT scan of the brain without contrast, that came back clear. While in the hospital they started noticing a rapid drop in her platelets levels to 35. They evaluated and decided this was due to an autoimmune reaction to the immunotherapy, and put her on daily 60 mg of Prednisone. The platelets were rising slowly to 48 at her discharge a week later. During 6 days at home after that she was feeling really weak and kept vomiting, and on July 24th, she fainted while getting up (her husband caught her) and we went back to the MSK urgent care. There they saw the platelets dropped back to 35, and started suspecting the bone marrow involvement. We refused the bone marrow biopsy, since after discussing with Dr Wolchok, our best bet is to try more immunotherapy (Ippi/Nivo) and they are planning to do it on Wednesday next week. It looks like mom is not eligible for any other clinical trials, since her platelets are around 24 now, and the minimum requirement for the trials is 100 (sometimes 75).
      She had blood transfusion done before getting discharged from the hospital this Friday, since her hemoglobin dropped to 7.
      It looks like we are down to very few options, if she is going to keep progressing on ippi and nivo.
      Anyone has any suggestions for potential other effective treatments, for a 63 year old, with bone-centric acral lentiginous melanoma? Please help.
      Note also, that mom has been following Gerson diet for a year with about 5 fresh juices per day, all organic, no sugar, no meat. But she started losing faith in it recently, and introduced the chicken, fish, back after her hip replacement surgery, since she needed strength. Now she cant hold much down anyway, with the nausea and vomiting. Today she had diarrhea and fever (up to 100.1), and we notified the melanoma fellow on call….
      Any treatment suggestions, given her history, including the alternative clinics that were effective for the people that you know personally, are really appreciated!!

      Thank you very much!

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          My mother's (who is 79) melanoma also started on her foot in 2015 and was also late with the diagnosis, thought it was a blister. Two areas of SLN were positive in groin and lower pelvis. She had a CLND in both areas. Scans clean for a year, but then iliac lymph node showed growth and biopsy in March confirmed spread. She was put on Keytruda also, but only three infusions before Onc said it wasn't working as a nodule in lung had grown (but not biopsied). 

          Did they do the mutation testing for your Mom? My mother had two mutations that there are treatments currently available for. She is on Ibrance, which is FDA approved for breast cancer (she's in a trial). She's only completed one 21 day cycle at the highest milligram and her white, red, and platelet count dropped (platelets at 44) all while on Coumadin. Scary stuff, but hoping that on Wednesday they'll lower the dose.

          Best wishes that your Mom's docs finds something that works and doesn't make her so sick. Hopefully she has a mutation that gives her more options.


              Hi Cindy,
              Thank you so much for your reply! Yes, my mom also thought it was a blister that she had scratched by accident. However, note that besides the lymph node, the PET Scan looked clean 8 months and then 10 months after the blister had become apparent… 
              Yes, the doctors did an Impact genetic analysis and didn't find any mutations that are relevant for treatment..
              Here is what is says:

              "Negative for somatic alterations in the clinically validated panel:
              Positive for the following somatic alterations in the investigational panel:
              PTP4A1 (NM_003463 – 6q12) Amplification (Fold Change: 20.1)
              ETV1 (NM_001163147) exon8 p.N195S (c.584A>G)
              NF1 (NM_001042492) exon 10 p.I377Tfs*9 (c.1130_1133delTTGA)
              RFWD2 (NM_022457) exon 13 p.L485R (c.1454T>G)"

              Do any of these match what they found in your mom?

              Best wishes for your mom as well!!!

              Thank you!





                Hi Yuliya, my Mom didn't have any of your Mom's mutations, she is CCND1 and TERT amplified and has the PTEN mutation.

                I looked up your list on a list from a study in Australia. It's the only concise breakdown I can find. I see the NF1 is on there with three possible target therapies. They are off course for other types of cancer but all these drugs are being tested for melanoma. Maybe you can check with her Onc.?

                — Patients with tumour found to be BRAF and NRAS wild type will have tumour tested further using the extended molecular testing platform designed for this project. Patients will first receive standard therapy(ies) for BRAF / NRAS wild type melanoma until disease progression or intolerable drug toxicities. Followed by a targeted therapy matched to the genetic aberration detected in their tumour as listed above.
                Other Names:
                AKT gene – Everolimus
                ALK – Ceritinib or Crizotinib
                ATM – Olaparib
                BRAF fusion – Trametinib
                BRCA1 – Olaparib
                BRCA2 – Olaparib
                CCND1 – Palbociclib
                CCND3 – Palbociclib
                CDK4 – Palbociclib
                CDKN2A – Palbociclib
                EGFR – Erlotinib, Gefitinib or Lapatinib
                ERBB2 – Lapatinib
                ERBB3 – Lapatinib
                ERBB4 – Lapatinib
                FBXW7 – Everolimus
                FGF/R – Sorafenib
                GNA11 – Sorafenib or Trametinib
                GNAQ – Sorafenib or Trametinib
                HGF – Cabozantinib
                HGF – Crizotinib
                HRAS – Sorafenib or Trametinib
                IDH1 – Vorinostat
                KDR – Cabozantinib or Ramucirumab
                KIT – Dasatinib, Imatinib, Nilotinib, Pazopanib, Regorafenib, Sorafenib or Sunitinib
                KRAS – Sorafenib or Trametinib
                MAP2K1 – Palbociclib or Trametinib
                MET – Crizotinib
                mTOR – Everolimus
                NF1 – Everolimus, Sorafenib or Trametinib
                PDGFR – Imatinib
                PIK3CA – Everolimus
                PTEN – Everolimus
                RICTOR – Everolimus
                STK11 – Everolimus
                TP53 – Bortezomib or Palbociclib —

                It's so hard for me to watch my mom go through this. I know your pain. Please stay in touch and let me know how's she's doing. My mom gets her first PET after Pembro then Ibrance in about four weeks. I'm very anxious.

                Best Wishes, Cindy


                  Hi Cindy,

                  Thank you so much for writing back and providing this list. Is there a link to that Australian study where you found this list? I would like to read the entire reference. 

                  Why did you guys decide not to try Ippi and Nivo after Keytruda seemed to have failed?

                  My best wishes for a good PET scan! Those are nerve-wrecking every time. 



                    Hi Yuliya;

                    I read your post and I'm really sorry for your mom. I'm pharmacist and I'm working on natural alternatives for degenetive diseases, cancer, etc…

                    you can contact me on my mail [email protected]

                    I need to have more informations about your mother, her diet, if she has or not other diseases such as diabetes or else.

                    I've been helping, and I'm still helping many peopole to cure their health problems, it will be my pleasure to help you too.


                      Hello, thank you for your kind words. I will send you a note. Yuliya


                        I hope this works…


                        She's in the American study, but it didn't provide this list in detail. We went this route because our Onc thought she'd do well with a target drug and he was willing to prescribe it off label if there wasn't a trial. Because of my mom's age, bad heart, and everything she's been through already, we're holding off on the Ipi/Nivo as long as possible due to side effects.



                          Hi Cindy, Thank you once again! Yes, that makes sense regarding the side effects.. Where are you guys located? I will search for the American counterpart of this study (the Australian one is not recruiting participants yet.) Our additional problem is that with platelets so low (24 latest), we can't participate in any trials..they usually require at least 75 and usually 100..

                          Many thanks,



                            We are in Nevada, outside Vegas. We're in the study through Salt Lake. I didn't see your mom's particular mutation or drug in this study, but it also says not all are listed because there are so many.


                            I'm not sure why our Onc said he would have prescribed Ibrance (Palbociclib) off label if no trial, except that because it's FDA approved he could. Might work in your case. It's crazy that these drugs mess up one's body so much sometimes they are shut out of other things. And I'm almost afraid my mom may be kicked out. Grrrr.


                              Hi Cindy, Thank you so much for the link! I was trying to look into NF1 yesterday, but so far didnt find anything concrete.. We don't know yet whether to try the 3rd ippi/nivo injection. I hope that doesn't make things worse. I hope things work out for your mom! 



                                Thank you Yuliya. And I'll pray for your Mom right along with mine. <3


                                  Thank you Cindy. Update so far: got the third ippi/nivo injection on August 9th. Bloodwork yesterday showed platelets down to 18, hemoglobin back down to 7, as before the ted blood cells transfusion. Yesterday started feeling pain in the sternum when taking deep breaths and moving. Can only stand up for a few minutes, then feels really weak and needs to lie down with ice on forehead. We came back to the urgent care now for xray of chest, etc.


                                    I just wrote a post with questions regarding T-VEC or intralesional IL-2 injections..

                                    If someone has any information, please let me know!

                                    Thank you!



                                      I just saw this, how is your Mom?


                                        My mom passed away on Saturday. 


                                          I'm so truly sorry. May she Rest In Peace after her hard fought battle. My condolences to you and your family.


                                            Thank you. 

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