› Forums › General Melanoma Community › failure to diagnosis, mistreatment and now Stage 4, poor prognosis
- This topic has 15 replies, 6 voices, and was last updated 5 years, 9 months ago by
Bruiser.
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- July 1, 2018 at 12:16 am
My son noticed small sore on heel in April 2017 and went from one VAMC Dr to another, no diagnosis, just pain meds until August when sent to UPMC Wound Care in Altoona. No Dr saw him, a CRNP, began debriding and it wouldnt heal. Noticed lumps in left ground, still no biopsy, sent to VAMC Pittsburgh, Dr took one look and told him he had cancer. This was Sept 2017. Biopsy in October confirmed spindle cell melanoma, Stage 3. Finally in Dec began immunotherapy, unsuccessful, metastisized to lungs. Went for 2nd opinion at Hillman Cancer Center and told Stage 4, only option clinical trial. That was Feb 2018, but had complications and still no clinical trial started. Drs and ourselves believe this is malpractice, failure to diagnosed and mistreatment by debriding a wound of unknown origin. Has anyone else experienced this? He also has lymphedema, cellulitis, tumor has horrible odor. Please give feedback
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- July 1, 2018 at 12:51 am
I am sorry for what you and your son are dealing with. I am not sure what to say about your diagnostic issues. What is most important now is treatment. There are more treatment options for melanoma now than ever before. Here is a primer that may help: http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2017/08/melanoma-intel-primer-for-current.html
I'm not sure what you mean by "immunotherapy", but I hope your son has been offered the ipi/nivo combo, which is FDA approved for Stage IV melanoma. Other options include intralesionals…if the tumor remains reachable transcutaneously. BRAF status and other tumor testing is important in seeking treatment as well.
I wish you my best. celeste
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- July 1, 2018 at 1:14 am
Yes he got the combo, that’s what they call immunotherapy. His braf is negative. Has 4 mutations. Dr says only option is a next generation clinical trial and that he wouldn’t benefit from any TD. Did get 5 radiation txs to try and shrink. Hasn’t met criteria for any clinical trials. Looking for miracle but not promising. Prayers and faith -
- July 1, 2018 at 3:40 am
Dear Bruiser
Like Celeste, am sorry for what your son and you are going through.
I am not that expert and not as knowledgeable as Celeste and others on this board, but I have a couple of questions. First, Have they considered surgery on the heel? Or would it be too difficult or invasive? Might this address a few of the questions you raise?
Second, on clinical trials, I am pretty sure they exist so am surprised your son has not met the criteria. You might have to travel elsewhere if Hillman not offering.
Third, how is he being treated now? Is he still on immunotherapy? It seems like it did not work but two months seems a really short time to make that determination. Yes it may have spread but the medicine may have needed time (I am not an expert though).
You might want to search on the board for others who have been treated at Hillman to learn their experiences and maybe ask them for advice (send messages directly). But I would hope your son could be on a clinical trial, probably immunotherapy and some combo.
Good luck Mark
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- July 1, 2018 at 4:24 am
When tumor was dime size but before diagnosed as melanoma surgery would have been option and probably successful. By time it was diagnosed tumor was too big and had metastasized to lymphatic and blood system so surgery no longer option. Dr said would be like mutilating him to surgically try and remove everything. He sees Dr Davar a melanoma specialist at Hillman. He has not met criteria because of severe reaction to the combo tx which almost killed him. He was placed on steroids and meds to slowly rebuild his system;therefore, couldn’t take any txs and labs, bp, etc messed up so couldn’t begin a clinical trial. He is being double treated by VAMC and Hillman Center and both agree he can’t begin clinical trial until labs and body meet the criteria for a clinical trial
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- July 1, 2018 at 11:00 am
I am so sorry. I ha be what I think is malpractice ,but I don't think that people want to talk about it. I had a mole on my neck Feb. 2017 cut off Never biopsy she put it was benign. Free back in about ,,6 months went back March 2018 State 3 C. I just had 2 nd neck surgery and start immunotherapy in 2 weeks. Contact attorney or medical board. But hope you find treatment for your son!!
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- July 1, 2018 at 2:03 pm
Again, I am sorry for what you and your son have been through. So very sorry that even treatment has been incredibly hard on him. I am hopefully that he will stabilize sufficiently as quickly as possible, so that he can qualify for some of the clinical trials currently available for Stage IV melanoma patients. You don't name the mutations for which your son is positive. Should he be NRAS positive…as well as some of the others….MEK inhibitors alone (which are FDA approved) have been tried with some success. I mean…if melanoma is gaining the upperhand…what can be lost by trying some therapy? Additionally, Right to Try legislation has been passed. Meaning….any patient who has not responded to conventional therapy….and is facing dire results without treatment….can gain access to a treatment of their choice. Now…all of that is much easier said than done. The process has not been tested by many. The red tape would most certainly be enormous. And…my biggest problem with Right to Try legislation….is that it comes with no promise or penalty toward insurance company payments for said treatment. I don't know that this is the sort of direction you or you son are ready to pursue…but I thought I would mention it.
Hang in there. Celeste
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- July 2, 2018 at 2:51 am
Dear Bruiser
thank you for your very comprehensive answer earlier – you captured everything very concisely and am really sorry for what your son and you are suffering
on the plus side I think Celeste gave you a good answer in response to what you shared plus it seems hillman know what they are doing so you have a team you can work with. Personally, I think it’s best to focus on this now – to think of options and trials and plans forward not to dwell on the past and possible mistakes. I know it is terrible what hAPpened and there might have been malpractice I don’t know (in my case I guess mistakes were made with not enough margins) but it’s better not to spend energy on this issue but to spend energy working with the hillman team (or a better one if you can find) on curing your son and getting him the best possible life. Fortunately it seems the hillman team are not making mistakes so work together with them and hope for the best. And yes prayers too which I send to you and will pray for your son
am sorry for what happened but I hope they can find new approaches. Also I hope once side effects calm down your son can be reconsidered for a trial. I don’t want to promise but It’s possible the side effects won’t recur (in my case I had to stop keytruda because of side effects but then I went back on and minimal side effects but maybe I was lucky)
Good luck on Friday
mark
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- July 8, 2018 at 11:44 pm
Thanks, treatment is most important without a doubt but it was Hillman that told us to per sue malpractice suit as well. He has children and a wife to consider if the worst happens. As a man, father and husband he worries about their future. He worked 2 jobs and breadwinner and now depends on SSDI to provide.
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- July 2, 2018 at 5:00 am
If I were him, at this first moment I would try to isolated limb perfusionto save his foot and leg and have a better quality of life. Believe me, perfusion works miracles, especially if you can use melphalan with TNF because of the size of the lesion. The perfusion can be done with another systemic treatment, without any problem.-
- July 8, 2018 at 11:28 pm
Haven’t heard of isolated limb perfusion. He saw Dr DA var at Hillman and they discussed a clinical trial administered through digestive system like colonoscopy but with VA being only insurance may be fibancial issue but we were told clinical trial drug tx has no charge. Next visit 2 weeks, have to wait and see. We r very concerned because he hasn’t had any treatment since Feb -
- July 8, 2018 at 11:28 pm
Haven’t heard of isolated limb perfusion. He saw Dr DA var at Hillman and they discussed a clinical trial administered through digestive system like colonoscopy but with VA being only insurance may be fibancial issue but we were told clinical trial drug tx has no charge. Next visit 2 weeks, have to wait and see. We r very concerned because he hasn’t had any treatment since Feb
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- July 6, 2018 at 3:57 am
Same sort of situation happened to my mother. She had a “blister” on the pad of her foot that really hurt her. When we saw her regular doctor he told her to soak her foot in vinegar and water. It receded but then came back bigger and uglier, definitely ulcerated. I took her to a dermatologist who did the biopsy. Before they would do surgery (or not), the oncologist had to biopsy one of the nodes found in her lung. Came back negative and during surgery, a bunch of groin lymph nodes came back microscopically positive. Had CLND. Year later had spread further up chain. Tried Pembo but now on Ibrance (breast cancer drug) due to her specific mutation. So far working. I pray they find a treatment that works for your son. Oh, and my mom even went to a podiatrist too, who said I dunno..
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- July 8, 2018 at 11:38 pm
That is insane. Any dr can use a simple dermascope and see cancer cells. His entire lymphatic system and blood is full of cancer. Has lympedema and cellulitis and says foot smells like death. Today he told me his good hip is horrible pain and he thinks its pinched nerve or pulled muscle. His left foot and limb is primary tumor and scans show metastasized to femur and hip and both lungs. With long delay without any treatment we r really concerned. I think metastasized to bones. Praying for ur mom
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