POZ Community Forums
Main Forums => Pre-HAART Long-Term Survivors => Topic started by: mudman8 on May 23, 2007, 05:26:42 pm
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Hi all, I have a new old problem. Last year I had a bump and scab on my head. dermatologist sprayed it with nitrogen. 6 months later it was a small volcano. New Derm. she got right on it. I had major surgery on my scalp while awake with Xanax to calm me and a head block for the pain to remove a sizable portion of my scalp (a night mare come true) . 4 months for new skin to grow back with many puss icky patches and antibiotic ointments, I was tired of it. 6 months later 6 new bumps appeared, no scabs, Derm. siad "these are inconsistent with cancer so lets call them cysts". 2 month wiat for simple biopsy while these things grew 3 times in size. Now proven to be cancer, I met a surgeon today that is saying it could be a simple job of replacing your center scalp with a patch of skin so you'll be bald (which I am mostly now so no problem) OR it could be a whole hog, burnish your skull and find a part of your body with bloodvessels to replace over your skull and do chemo and radiation, the new improved bionic Glenn.
I'm getting kind of scared and more than nervous at thinking they're gonna do this all with me awake on the table for 7 hours like last time.
I ask the new surgeon why they didn't treat it seriously the first times and he comes back with evasive questions about my HIV status and general health. My angry email to Derm that called it a cyst is not answered. I know it has to come off ASAP, but I'm getting the willies imagining all sorts of outcomes. Thankfully my HIV Dr believes in better living thru chemistry and gives me Ativan to calm me and Ambien to sleep at night. I double the evening dose of Ativan with a scotch and water for that oh so comforting feeling of being legally high. No driving allowed.
Also have nice new boyfriend from just before teh first surgery who comes over to comfort me as often as possible in his busy life. Such a sweetheart. ::) :'(
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Hey Glenn,
Having been the route with the dermatologist - actually, still going that route - I understand where you at least started. I've had small cancers frozen off of my head, face and arms.
But nothing comes close to what you described after that.
Lord, how in the world could they even attempt that while you were awake?
As far as the major surgery you described, burnishing, etc., there is no way this could happen without putting you under is there?
I will be keeping you in my thoughts and be sending copious amounts of healing energy your way.
Please keep us posted on how things go.
HUGS,
Mark
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Sorry to hear that this is going on I went through a similar thing with the same sort of cancer two years ago. I waited a month for a decision from a Dr and insurance about course of treatment and then had no success. I had surgery to remove a large tumor in my cheek, it took 6 hours. I was not awake as per my request. I, also, requested a head/neck cancer specialist, had a long talk with him about my status and what that means. As frightened as I was I made certain that my status was known that my meds were continued and that all the Drs spoke to one another. I routinely asked for copies of records and notes so I could keep track of consultations. He was great, not a specialist with HIV but with cancer.
Following surgery, I searched for and found a derm who is Know ledgable about HIV, she did her residency at one of the hospitals that specializes in HIV/AIDS treatment. She is now in So Cal I now know if I have a problem I will get in quickly due to my suppressed immune system. Finding the right Drs made a big difference.
All my thoughts are with you.
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You're in my thoughts and prayers! Let us know how things are going. :-* :-*
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Thanks for all of your thoughts. It's beena rough week. After I wrote that I kept busy all day expecting my BF to come over but I was morose when he got here. Sat him down and started talking about what teh Dr told me and the damn broke. All my fears and anger came out in one hour of crying on his shoulder. He just held me at times and when it was right he talked me back into reality, siad he'd always be available for me even tho we can't live together, he loved me. Finally the words I wanted to hear. I've never been that emotional in 40 years. He's a dear sweet man to me , took me out for mexican food and a big fat margharita.
Next day Thurs. talk with my HIV Dr and social worker who listened intently, came home and found a messsage about seeing the team of specialists on Monday June 4th. I'm taking a friend who'd been thru cancer he can help ask important questions and remember details.
Friday, talk with therapist I was depressed but held on, We have to end the sessions but she's helping me get another. Then at home at 5 I was listening to early Elton John records and phone call from the BF as he was at airport about to leave for teh weekend, hearing his voice I teared up, he asked how I was doing?, Fine, I mumbled thru my tears. He called me a liar, I was laughing and crying. He's so sweet.
Saturday I was stable again and feel I can handle things well. Lots of friends to support me and listen. I'm not afraid of chemo or radiation, it's the surgery. I''m sure this time I'll be out but what will I look like? Frankenstein with huge scar around my bald head? I'll be shaving my head and learn to wear my scar proudly. And a new set of hats for different occasions.
I'll keep you posted.
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Well it was a long wait this AM about 3 hours after initial exam from several Drs. the results are not good.
They did explain that the spread of this was perplexing and unusual the way it split up into 6-8 bumps. Surgery for skin graft wasn't really feasible, too big of an area from ear to ear basically, and horrible time getting skin to take. It would probably just pop up outside of the area after a horrible time with wounds etc.
Final decision was it's incurable. I am going to be aggressive and try chemo and radiation which will set it back but they said eventually it will come back and spread. I'm glad I don't have to go thru surgery and skin graft. I'm not as scared of the effects of radiation and chemo. Still it's a shock.
Treatments start next week, radiation Wed 2 PM. , 5 days a week for 7 weeks tho may have to take a break before they finish up due to raw skin, then I think chemo after. They explained that chemo is unusual for this type of cancer, but I'm going to try it anyway.
John was a big help sitting with me for the long haul. He'll be with me next tuesday for the chemo team to discuss options and probable side effects. He remembered to ask about counseling help and I signed up for it thru Cancer Society and will have someone familiar with medical stuff I'll be going thru. They will contact me.
There was no discussion of time expectancy it's a see how it goes experience. Nice Drs, all younger than me by 10 years at least. I had envisioned gray hair and serious demeanor, they were serious tho. The last chemo guy I'll see next week didn't even wear a lab coat, nice guy, gay as pink ink. Must be a tough part of medicine to be in.
glenn
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Wow Glenn,
I'm both relieved about the surgery being dropped and concerned for you as you begin radiation and chemo.
Please know you will be in my thoughts and I will be sending lots of energy your way.
Please keep us posted on how things go.
(((((BIG HUG)))))
Mark
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Hello Glenn,
I will be thinking of you,...And sending positive energy your way. Stay in touch with us..
Ray
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Hi all, thanks for your thoughts, It's been about 2 weeks of treatments, first day the chemo was nothing, 2 days later I had nausea, that was easy peasy just took the little pink pills they gave me for it and laid low that weekend. Radiation is easy too, somewhat like the dentist tho once set up they put it on for a minute. Takes more time to get there and set up than treatment. My scalp is getting rough skin and radiologist tech said next week I might start blistering. It just is sensitive like too much sun. I get my next chemo July 3rd, just in time for the holiday. No parties planned see how I feel.
BF has been wonderful, I get to see him tomorrow night for some TLC and dinner after his work. Looking forward to that, best medicine around.
Went last weekend to see my parents at their retirement home, got a lot of well wishes from their friends. Also saw a woman I worked with way back in my 20s, she's selling her trailer in a beach city near San Diego. nice talk but I started feeling sweaty and tired inthe sun, wanted to get my cap off, and couldn't get away fast enough. LOL Got home at 4 and mom made me a drink and i took a shower, felt great to run my head under the water and 2 pills to help with the irritation. It was a good outing, dad asked all teh medical questions, but when he wasn't around mom asked the personal questions. LOL
Took a look at my will and found lots of things I want to change. My therapist asked how that felt and I feel it's great to get things in order, I'd hate to leave a mess. Nice thing about LA is great services, this new therapist come to my apartment and I'm hoping to get a cleaning service next week so I'm holding off scrubing my floor and vacuming..... but dishes I did yesterday. Life goes on, Chop wood carry water....
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Sounds like you are doing the right things. the treatments do wear you down. I found a topical product that helped with the irritation. I actually was given a sample by my radiologist and it was great. Kept the skin in good shape, with miniman irritation for the duration of treatment. Good luck and god speed.
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Good to hear you're carrying on and dealing with this challenging situation. It takes a lot to get through this life!
I'm a two timer on the skin cancer thing, the most recent being this past February.
Wishing you the best and of course keep us posted.
Big cheers,
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I just read your updates and am impressed by your calm resolve. Wishing you the best.
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mudman,
good to hear from you, i wish you the best.
Milker.
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Thanks guys, I appreciate your comments., I'm trying my best and have great friends and family to support me. Keeping busy and am getting some home health care, psychologist comes to my apartment and next week a cleaning service. Wohoo! I"ve been holding off on my kitchen floor for too long, it'll be nice to get that taken care of.
Thankfully my BF will come over later today after his Saturday at the office. It's always magic when he's here. I need to talk to my Dr to find something that will calm my sensitive scalp. I see two of them next week, that will be on top of my list.
glenn
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Hello Glenn,
Hope all is well. How have the treatments affected your eating habits? I ask this because a few weeks ago I had purchased a couple of smaller books dealing with eating and nutritional hints/needs for those going through chemo or radiation treatments. These booklets are put out by the National Cancer society.
I am sure you have probably received plenty of advice, and you may already have material on this, But if you need any further advice or comments, just ask, there is a lot of information in these booklets in reference to nutrition , before, during and after treatments. A lot of mention on dietary needs, and managing eating problems during treatment. Their excellent books !!
Wishing you the best-----Ray
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I haven't seen a posting from you for awhile, I hope things are going well. Treatments like those you are going through will sometimes wear you down. Keep us posted on your progress. Did the doctor have a product to take treat your skin?
My thohghts are with you.
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Thanks all, I'm getting by alright. I'm eating well tho after chemo I do smalller meals. I have those Cancer books on nutrition. I've read part of them. I'm tired but doing what I usually do. Had 3 appmts yesterday one a cleaning guy from a service in LA. he was slow but thorough. I had to do half of what he didn't, like laundry, vacuuming dusting but he got kitchen and bath. Wore me out. today I'm in a slow mode but most of it was done.
Chemo hasn't been that bad tho it does wild things to my blood work. both HIV and chemo drs are blood testing me every week. Glad I have great friends that keep up on me.
I tried Aloe gel that stung, not sure I want to try again but I don't have the scabs Drs said I'd have by now. I use hydrocortizone cream to calm my scalp down and spent last sunday afternoon in hte shower wetting and gently rubbing my scalp of dead skin, looks much better now and not as itchy. LOL Drs never told me not to.
I also bought 3 hats from a store so I'd look OK and they have open weaves or lighter than my baseball caps. Lookin stylish.
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I am glad you have posted something, I have had you in my thoughts. I searched for and found the product I used during radiation for the topical pain and discomfort. It is from a company called adra sina. They have a website and you can order from there. ( sorry If it is not acceptable to post a product name, but I attempted to send you a PM)
I felt it was a bit of miracle since the raditaion had burned my face and scalp. This stuff took the pain away and helped heal even though I was continuing treatements. The doctors were suprised that my skin looked as good as it did. I used it after I completed treatments and it really helped the healing.
Keep you thoughts positive and know that there are a lot of people thinking of you.
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Thanks for the company Jordan, I looked them up and will decide on something. I know there may be people upset that products are proffered but it will help me.
I got a second opinion from USC Norris Cancer Dr. He siad I'm gettting great treatment, results are looking good. Best advice is to have a friend take mug shots of me front sides back and top of head 2-3 times a year without flash. then I can compare to previous years and see if there are changes.
also said they really are surface skin cells and can be removed if they become lower on my head. Concern is getting into lymph glands. but radiation and surgery can take care of that. I feel I have a new lease on life.
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i think the spelling is squamous cell carcinoma
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Poz, if you will notice, Mudman's last post was made a year ago.
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hi all, it has been a long time since I've been on. I was surprised to see this thread still active. I guess I did misspell it, but who cares. I'm doing fine, I see Oncology Drs every 3 months now, and no new bumps. That doesn't mean they won't come back. I asked one new Dr who was checking me out when they would reappear and not expecting a direct answer and he said that if they did, it would be within 2 years. Then beyond that it's much less likely. So in Sept will be 1 year.
I'm still not used to being totally bald on top, but have now bought clippers and do my own hair. It's down to feeling like sandpaper. Why pay $15 plus tip every 2 weeks when I can do it myself. It just takes me longer. Tho 2nd time I tried it I twice I hit my scalp with the teeth and started bleeding. I lean forward over the sink with newspaper spread out to catch the hair but I looked up and trickles of blood were on my forehead. Not pretty. But they cleaned up alright in the shower. I"m more careful now.
I also have several new hats to wear, one an English driving cap and another sort of early 60s brimmed cap with loose weave to let air thru. On sunny days I put a handkerchief folded on my head to keep the sun off the top. The Drs get really upset if they see any pink skin. I don't like the fact my face is red from sun and my roseasea condition but my bald top is white. Other times I wear thick baseball caps. Still spending half a day with a hat on can get irritating. I enjoy the hats tho and think other guys should look into them with brims. Baseball caps just don't cover ears or neck. My cousin spent years outside in bakersfield and he's had major ear operations and a nose repair to get ride of cancerous spots.
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Mud, congratulations on being cancer-free this long. I hope it remains that way.
By the way, I think you look very handsome.
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Hi,
Glad to hear that your not having any more problems. Lets hope this continues . Keep that head covered outside !!
Take care----Ray
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Welcome back. Glad things are going well.
Is that your house in the picture? If so, you're buyin me dinner the next time you're in New York.
;)
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I like your hat. :) I was reading your thread and looking at my calendar and then realized it was from last year, but you have come such a long way and I am glad you posted.