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January 31, 2013 at 12:51 am #20978
My husband had his CAT scan after the first cycle of PD-1. The good news is that his overall tumor shrinkage is 61%. He has been experiencing some back pain in his mid/upper back. He has lesions in the area of the pain and compression fractures caused by the lesions. He had an MRI on Saturday and more good news. There is no spinal cord compression. The lesions are smaller and the pain is most likely from the fracture. They will do a procedure (the name escapes me) to essentially place bone cement in the fracture. Another sigh of relief as radiation would eliminate him from the study. The doctors are very pleased with his response so far and are hopeful that it will continue. Really the best news we have had in a long time! A great team of doctors at Sloan!January 31, 2013 at 1:14 am #58891SusanBParticipant That is great news! Rejoice!
I had never heard of lesions causing compression fractures. As if the poor guy didn’t have enough to deal with. So glad to know those can be fixed.January 31, 2013 at 2:25 am #58892AnonymousGuest
Really wonderful news Laurie. It must feel like a large weight is being lifted off of you. The Sloan team is first rate!
The procedure you mentioned for the compression fractures is called vertebroplasty. A quick setting thermal cement is carefully injected into the vertebrae. Its primary purpose is to stabilize the bone and prevent further compression of the fracture. There may well be a secondary benefit as the heat generated during the curing of the cement can be high enough to kill some of the cancer without causing effects on the bone and nerve tissue. Rachel had this done on one vertebrae with a compression fracture from a lesion. It eliminated the mild pain she was experiencing and it never returned. While the procedures effectiveness for pain relief varies from person to person it is quite effective at stabilizing the bone. There is a version called kyphoplasty where a balloon is inserted and inflated to restore the height of the fractured vertebrae and then the cement is injected into the void left when the balloon is removed. We were advised to avoid that one as it’s more complicated and her vertebrae compression was only 20-30%. It worked well for Rachel but always listen to your doctor.
Keep us posted and I’m praying for you guys.
JeffJanuary 31, 2013 at 2:47 am #58893NYKarenParticipant
Great news Laurie.
I completely agree about Sloan. Which docs do you see?
I see Alan Halpern for onc derm, Jedd Wolchok for med onc and first Dr. Shaha, now Boyle as surgeons. I’m also starting acupuncture on Friday; it’s not at hospital, but at 1st & 74th.
KarenJanuary 31, 2013 at 8:52 pm #58894
Hello SusanB, Jeffb and NY Karen!
Yes, Susan we are beyond pleased! Thanks Jeffb for clearing up the names for the procedures. I believe it will be the verteboplasty although we are meeting with the surgeon next week. I like your suggestion that the heat may help to eliminate the lesion! My husband is anxious to see if it helps relieve the pain in the area. I believe it is an outpatient procedure? He is just hoping he is not awake
Despite the pain I have encouraged him to go into his studio and play his drums. No pain will be a blessing!
NY Karen….he is a patient of the ITC team at Sloan. Dr. Wolchok is the bomb! We call his young fellow Dr. Superman. We couldn’t remember his name and thought he looked like the Superman in the comic books. We now know his name but we still refer to him as Dr. Superman
😆Can’t say enough about those folks!January 31, 2013 at 10:05 pm #58895PatWParticipant Hi, Karen. I’m curious about the acupuncture. Why are you doing that? To ease pain? Shrink tumors? Some other reason? I’m a big believer in acupuncture for some things, so I was just wondering what prompted you to check it out.February 1, 2013 at 2:44 am #58896NYKarenParticipant Hi Pat,
I have 2 main reasons for trying acupuncture:
I just found that it can relieve the severe mouth dryness which remains a continuing bad side effect of head/neck radiation.
I also have severe leg pain that I’ve been posting about with Mary Sue. What worries me the most is that I had some pain even before Zel, but now nothing relieves it, even Alleve, pred, or high dosages of narcotics. I’m stopping the pred to see if that helps & having an ultrasound on tues to rule out blood clot.
Please share your acupuncture experience, Pat, if you don’t mind. I’d love to hear it.
KarenFebruary 1, 2013 at 2:59 am #58897PatWParticipant
Actually, it was my mother who had acupuncture and it was a number of years ago. She had chronic, crippling back pain supposedly from a slipped disc. She tried every treatment available at the time– bed rest, physical therapy, surgery (twice)– to no avail. She was taking Percocet to the point of having hallucinations but unless she was sleeping, she was in pain. Finally, I suggested acupuncture and she was so desperate that she tried it. After the first treatment, the worst of the pain was gone. After 5 treatments in 5 days plus a couple of days of R&R, her pain was gone and never came back.
I find acupuncture fascinating because Western medicine has no idea about how it works. We just can’t get our heads around chi and meridians and such. And like any other medical treatment (including aspirin) it works on some things but not on others. But if I was in severe pain, I’d sure try acupuncture before I would try surgery.February 3, 2013 at 5:49 am #58898zephyr66Participant
Fantastic!!! that has got to be some relief for you both in more ways than one. happy to hear the Pd1 is working out. so many great new things coming our way in the melanoma world!
SylviaMarch 6, 2013 at 5:48 am #58899abdormaParticipant
I am wondering if your husband went through with the vertebraplasty procedure to help with the pain he was having with his compression fracture? And if he did, did it help with the pain? My husband has a compression fracture of his T5 vertebra and has had increasing pain when standing or walking for more than five minutes. Definitely affecting his everyday life. He had an MRI of spine about two weeks ago and there is no spinal cord compression.
We go later this week for oncologist, blood and PET scan and we think for his his third round of IPI. We are planning on talking to oncologist about things she could do to help with the pain. She had previously talked about radiation but we would like to see about other alternatives. Would love to hear how your husband’s pain is now.
AnnMarch 7, 2013 at 1:32 am #58900
My husbands procedure was a success. He has, for months, complained that his back felt “broken”. Prior to the shrinkage of tumors in the area (T10,T11) I don’t think this was an option. Fortunately like your husband there was no spinal cord compression. Radiation would have eliminated him from the anti PD-1 study he is enrolled in. So….I am not sure I am able to answer your question completely. I hope that whatever you and the doctors decide to do give him the relief he needs!March 7, 2013 at 4:15 pm #58901abdormaParticipant
You answered my question. We go this afternoon for PET scan and blood work and meet with oncologist tomorrow and go for third round of IPI. We would like to avoid radiation in case IPI doesn’t work and he needs to go for a clinical trial but he needs some relief. My husband describes the pain like his upper body is caving in on his lower trunk. Hoping your husband is still doing well on anti PD1 trial!
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