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October 14, 2012 at 4:39 pm #20686
In mid September I was diagnose T3b Melanoma on two spots on the bottom of my foot. I assume this is Stage III, so this is where I am posting it. I’m glad that I found this site since it answers a lot of questions that I had and gave me a list of things to do and questions to ask.
I have a pre-op conference with my surgeon on Oct 17 and surgery is scheduled for Oct 19.
In August, I was hospitalized with Systemic Inflammatory Response Syndrome, a fancy term for they don’t know what caused my body to be covered in hives and every joint to become swollen and experience extreme pain. They put me on prednisone, a steroid. This got rid of the hives and joint pain but created several other problems. It put me in continuous Atrial Fibrillation and caused my resting heart rate to climb to 85-95 BPM (from 45-55). My cardiologist wants my RHR to be under 120 to lessen the chance of stroke or heart attack. Just walking up stairs puts me in the 130 BPM range. It also increased my blood sugar (Type 2 Diabetic) and was placed on insulin. I have been slowly weaned off the prednisone and will be off on Oct. 15.
The first surgeon I talked to was originally scheduled to do the lymph node surgery and was arranging for a foot surgeon and an oncologist. Instead, my case was transferred to a surgical oncologist specializing in soft tissue melanomas because the original dock was transferring out of the area. I am pleased with this decision.
I have two spots that were biopsied, one on the ball of my foot behind the big toe, and the other an inch or so to the center of my foot, below the middle toe. I was told that most of the pad below my toes, about 2”x 3”, would be removed and that it would probably be too deep for skin grafts, so they would let it heal from the inside out, requiring me to be off my foot for at least eight weeks.
We will have to watch it closely since I am diabetic. Encouraging is that both spots where they performed the biopsies have healed over and are not ulcerated any more. With the insulin and diet (45-100 grams of Carbohydrates per day), I have been controlling my Blood Glucose levels very well, usually 70-100, except for my first test of the day after I take the prednisone.
I have read that it may take a long time to for the effects of prednisone to wear off, so I am hoping that this won’t create too many other problems.
While thinking of a closing paragraph to wrap this up, I realized I don’t know why I am writing this. I think maybe I just need to get it out to people that may understand and that may have had similar “side issues”. Thank you for your time.October 14, 2012 at 8:15 pm #56960msue5Participant
One thing I would suggest is after surgery to consult a wound center. I was on Prednisone when I had my Lymph Node Dissection and it caused many healing issues. It took a long time and a flap procedure where they took skin and muscle from my abdomen and transferred it to my groin. They helped me heal by trying many different things. They know the latest treatments and all they do is wound care. I went 1-2 times a week and finally was completely healed after 5 months. During this time I went off the prednisone but there are lingering effects for a long time. My insurance covered everything. Hope this helps and good luck with your surgery.
Mary SueOctober 16, 2012 at 1:12 am #56961
Thanks for the tip. I’ll check with my medical plan to see if they have around here. I’m sure they will have something like that since they are probably the largest and one of the most progressive medical networks in California.
I was a little disappointed when my Rheumatologist cut it down to 5 mg per day for a week rather than cutting it out altogether. He said that if I don’t have problems at this dose, I’ll be off Monday, my day for surgery. I guess it is better to do this rather than have a flair-up.October 17, 2012 at 11:15 pm #56962
Pathology Report of 9/14
Tumor Site: Distal medial sole
Tumor Size: Greatest dimension 6.0 cm
Maximum Tumor Thickness: At least 3.0 mm
Margins: Peripheral margins involved by invasive melanoma. Deep margins involved by invasive melanoma.
Mitotic Index 6.0/sq mm
Primary Tumor (pT): pt3b: Melanoma 2.01 to 4 mm in thickness, with ulceration
Doesn’t look real promising.October 18, 2012 at 8:43 am #56963krissy424Participant
i hope your pre-op appointment went well today and at least most of your questions were answered. Wishing you the best as you go to surgery tomorrow.
I’m sure i had Systemic Inflammatory Response Syndrome when i was fourteen. i never had a name for it till i read your post and researched it. At one point i wondered if it might have been Stevens- Johnson syndrome. I was in-hospital six days and lucky I recovered. SIRS is a very frightening condition.
Your path report shows a serious melanoma, but many have recovered from worse. I’m sorry I’m not sounding very tactful tonight. There is no reason to feel hopeless. Many are in long term remission with stage lV melanoma that would have been very poor outcome five years ago. Some of the meds used in Trials currently are having amazing results. Hang in there. We are all routing for you. Let us know how the surgery goes.
SSM 1A upper back, radial growth phase,
Bresler .55. Clark 11, no mitosis
june 15 2012October 18, 2012 at 11:40 pm #56964AbbyParticipant
Hey “CRody”, Kris is right. I had a deeper breslow, higher mitosis, ulceration, and 17 months later I’m still here NED and kicking!!
Be strong. Lots of people fight this and many win!!
Keep a positive attitude, its the best defense!!
In my prayers,
AbbyOctober 19, 2012 at 2:39 pm #56965
@ Krissy, I think my pre-op went well and the questions that I have enough knowledge to ask were answered. The Doc pushed and prodded the lymph nodes in my groin and said he found nothing alarming.
@ Abby, good to hear that you are NED with numbers more serious than mine. It gives me a lot of hope. I had a pity party the other night but, for the most part, have been positive about it. My wife and I have always been positive type people, maybe because we have been blessed with so many good things in our life together.October 24, 2012 at 3:06 pm #56966
I had WES surgery Monday where they removed the pad below the toes on the right foot, about 7 cm X 8 cm X 1 cm as well as a SNLB in my groin where they removed 4 nodes. It will be “2 weeks” for the biopsy (more likely a few days). It really looks nasty, but, surprisingly, I am in little pain. I took a hydrocodone this morning after my foot cramped up. That hurt.
My plan covers wound care and I was set up with a Wound Vac, a device that creates a slight suction over the wound that removes blood and other moisture and promotes growth of cells and small blood vessels. Wound Care nurses will come to my house three times a week to change the dressings.October 24, 2012 at 3:19 pm #56967
Correction: 2 weeks for the pathology report, not biopsy.November 6, 2012 at 12:20 am #56968 Surgical Pathology, Final Pathologic Diagnosis:
A) Lymph Node, Right Groin Sentinel #1 Biopsy: One lymph node with no tumor identified.
Lymph Node, Right Groin Sentinel #2 Biopsy: One lymph node with no tumor identified.
C) Skin, right foot, excision:
Invasive Malignant Melanoma, Breslow Depth 3.7 mm, margins negative for invasive melanoma with closest approach 7mm from interior margin and 3mm from deep margin. Associated melanoma in Situ; margins negative for diagnostic in situ melanoma with closest approach approximately 2 mm from the lateral margin and 5 mm from the inferior margin.
D) Soft Tissue, Deep Margin Right Foot, Excision:
Fibroadipose Tissue; no Tumor Identified.November 6, 2012 at 5:18 am #56969msue5Participant
I am glad you consulted with the wound center. I worked as a nurse and saw firsthand how amazing the wound vacs are. I almost had one after my groin dissection. It was delivered to my house but the day before it was to be placed I had an appt with a plastic surgeon and he said I can fix this huge crater in your groin today.No open OR but was admitted that day and a flap procedure was done the next day where they took skin, tissue and muscle from my abdomen and moved it underneath to fill the hole so I never got to use the vac. I still had an open area after the flap surgery that was about an inch long and went to the wound center for 5 more months till the opening was completely closed. They took great care of me and I was glad I referred myself. Good luck with you’re healing.
Mary SueNovember 6, 2012 at 12:19 pm #56970Catherine PooleKeymaster
I hope that Shirley sees this as she had a similar melanoma depth and is doing fine. I would ask if this is Acral Lentiginous melanoma as that is what it sounds like. Being on a lower extremity helps your prognosis too. I hope you heal well and for pain, sometimes good old tylenol and advil are helpful without adverse side affects.November 6, 2012 at 9:16 pm #56971 @ Mary Sue,
I have an appointment with the plastic surgeon this Thursday so I’ll find out what they intend to do then. Although I have lost almost 100 pounds (by choice, proper eating and exercise), I still have a layer of fat and a lot of loose skin at my stomach area so we’ll have to see if that will cause any problems.
Actually, I didn’t have to consult with the Wound Care Center, it was part of my coverage. They showed up while I was in the hospital with the pump. When I started the Wound-Vac, the wound was about 1 cm deep, smooth, flat, dry and mostly black from cauterization. Now it is about ½ cm deep, fresh, moist, red meat that has more nerve endings. Interestingly, I have very little pain except on the nights that I have the Wound-Vac dressing changed. Then I will take a 5/325 hydrocodone. I usually don’t take any meds in the day time unless my foot really cramps up. Before I have my dressing changed, I take 2 5/325 Oxycodone an hour before the Wound Care Nurse comes to the house, then lidocaine gel after he rips off the old dressing and before he cleans it up and applies the new dressing. They also have me taking Juven Tissue Building Powder and Whey Protein Powder twice a day to promote healing.
The one in the middle of my foot sounds like Acral Lentiginous melanoma, but the one on the ball of my foot below my big toe doesn’t. I ask the Dr. next time I see him.November 7, 2012 at 12:53 am #56972Shirley ZParticipant
So happy to hear that there was no lymph node involvement.
I was diagnosed 6 yrs ago with a melanoma on my big toe. Very poor prognosis. Almost 12 mm deep, ulcerated, a matted palpable cluster in my groin and vascular invasion. I did have a recur in my shin area 3 yrs ago but have remained NED since. My biggest problem is the lymphedema from the groin LND.
Just writing to you to let you know that there is hope. Even with a very negative prognosis.
Wishing you a speedy recovery and a happy, healthy future.
Shirley ZNovember 7, 2012 at 3:15 am #56973
Thank you, Shirley. Congratulations on being 3 years NED. I was at the wound care office having my dressing changed when my Dr. popped in and gave my wife the pathology report. He explained that they got all the melanoma at the excision and the lymph nodes came back negative. I was shocked and had to ask him if that meant that it had not spread to the lymph nodes and he reassured me that they were clear. Although I have tried to be very positive, I guess in the back of my mind, I was preparing for the worse, and when he told me I was clear, I wanted to cry I was so relieved. The drive back home was a sensation in and of itself with all the cattle, rolling hills, farm houses, blue sky. . .
My health plan has really jumped on this. I see the oncologist tomorrow and plastic surgeon Thursday. My Dermatologist contacted me to see him in a few months to keep on top of this and any new problems that may come up.
I guess I am eight days NED, and counting. Not much, but I’ll take every day!
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