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How I got here..

rlavery
Posts: 15
Joined: Apr 2002

Last December I was diagnosed with a 1 mm melanoma on my upper right back, just where you can't scratch. In early December it was removed via a wide excision and a sentinel node biopsy was performed on the bunch in the right armpit. The results of the sentinel node biospy were negative. So I believe I'm stage 1.
From the onset of learning of my dilemna I have been a fairly nervous wreck, but not so much due to the realities of the disease but to the lack of information my medical community gave me concerning it. Bascially I was told to go home and come back in 6 months for a checkup or sooner if I developed a cold that I couldn't get rid of. That didn't sit too well with me. Especially after I found out that they should have done an RT-PCR on the blood surrounding the lymph node, which they didn't do.
I immediately started researching melanoma and bugging my "point of contact" doctor with a flood of evidently bothersome questions. I found a test called a Thormahlen's test that my doctor and the lab had no knowledge about (and this is a great big east coast health organization, with not such a good batting average). My results from that test were positive and because of the results I was finally referred to an oncologist. A very non-specific kind of oncologist, one who says very little (obviously from fear of litigation). The oncologist, while downplaying the effectiveness of the Thormahlen's test recommended a CT scan to look for tumors. He bascially said he was trying to run me out of fears.
The results were fairly encouraging, the Thormahlen's test normally indicates liver or kidney tumors (my add to this is saliva also), the CT scans showed no "noticeable" tumors in those areas. However, two very very small nodules were found in my right lung, too small for a biopsy yet ( my hopes are that they are just trying to pay for their new CT scanner). So the saga continues and we wait, watch and scan in 3 months again.
Basically, doctors are like cops, they can't predict when or where trouble will start, they and we, just have to wait and constantly look for it and then wait for it to get big enough to be correctly identified and then maybe handled.
Every day I try to put this out of my head, but every day a little creeps back in. I have what I term "panic" attacks at the strangest times. I'll be sitting, intently focused on my profession, when all of a sudden, out of nowhere, I get a feeling as though I'm about to die, I get tunnel vision, lightheaded and all thought escapes me. It lasts from 1 to 20 minutes until I finally pull myself out of it. My general health is good, except for the constant "slight" lightheadedness or "fuzziness" if you will, (maybe I need new glasses) and slight constant anxiety. I eat very very healthy these days, no artifical anything (especially artificial sweeteners), no white bread, no caffeine, no sugar, no pharmaceuticals, low fat, regular protein (before 1:00 pm) and regular
carbohydrates. If nothing else my cholesterol has dropped 40 points, but then again, if I had a choice, I'd rather go face down in the mashed potatoes. The only other problem I seem to have developed and I don't know if this was with me before the melanoma , is a low core body temperature. My body temperature these days is running between 96 and 97.7. Again my point of contact doctor says this "can be" normal and a TSH test came back normal.
And in my effort to search for answers, clues or insights into my future I have arrived here, to share, to listen, to talk and to grow, no matter what the outcome.
Hi everyone!!

Sincerely yours,
Rick

gnail's picture
gnail
Posts: 35
Joined: Sep 2000

Hi Rick,

My situation almost exactly mirrors yours. Most interesting is that my core temperature as dropped a degree too. My norm is about 97.6 degrees. Your doctor said this is normal? What causes it?

Best regards,
Greg

rlavery
Posts: 15
Joined: Apr 2002

Hi Greg:

My point of contact doctor basically wasn't concerned with my lower body temperature. He did not elaborate. His nurse however, dismissed it becuase she has always had lower body temperature, quite professional huh? Anyway, all the research I've done, suggests that it could thyroid or adrenal gland related, it could be a aside effect of the surgery or it could be what the holistics call "Wilson's syndrone" if that even exists. Because my point of contact doctor only did a TSH test and not a specific T3 or T4 test, I don't have a clue what it really is. My main concern is that a lower body temperature cannot fight as well as a normal body temperature. The enzyme process of the body is optimized for 98.6.
Greg, if you learn anything about this lower body temp, please paa it on, as I will.
Regards,
Rick

gnail's picture
gnail
Posts: 35
Joined: Sep 2000

Thanks Rick. So far so good. I never found out about the lower temperature, but it has never given me any grief. Hang in there buddy. Greg

lilwheatie
Posts: 1
Joined: Apr 2002

Hi Rick...just read your letter and I too, was diagnosed with stage 1 melanoma last summer. My mole, on my lower leg, was removed and more of the surrounding area excised by a plastic surgeon. But I know nothing...I hate being so naive. I have had a wicked cough for the last 3 weeks and my family doctor said it was pneumonia by listening to my chest. Someone suggested I get a chest exray, which I plan on calling my doctor on Monday. Another concern is the sun now...can we go out in it at all?? Or sunscreen, long tees and pants are the uniform now?? I hate sounding so stupid but I guess I'm not asking my doctor the right questions and she is not offering any info. Any suggestions you have I would appreciate them. Thanks, Nancy

rlavery
Posts: 15
Joined: Apr 2002

Hi Nancy:

Not to be an alarmist, but personally, now that I have had one of the most deadliest cancers known, when I develop anything new, out of the ordinary, that lasts for a while, I get it checked by all the means possible. I'm not sure an xray will see what the problem is, however, a correctly read CT scan will remove most of the doubt.
The sun.... from what I've read they, (the experts) just can't repeat the creation of melanoma from radiation and that there are other theories around that suggest melanoma may be caused by a Vitamin D toxicity or a combination of both. They (the experts) could never expose the fact of the Vitamin D toxicity, for fear of destroying the milk industry.
That said and because the sun also provides Vitamin D, I use SPF 50 if I can find it. This new regulation that says no sunscreen can have a rating greater than 30 smells of political payoff. I also look for hair products that contain SPF, just in case I get caught without a hat. I do believe long pants and long sleeves are the order of the day, yet the density of the fabric is also important, sheer doesn't cut it. The other note about the sun is stay out of it during peak hours.
If you find a good supplier for SPF 50 or good SPF hair products, please let me know.
Hope that helps.
Regards,
Rick

gnail's picture
gnail
Posts: 35
Joined: Sep 2000

I totally agree with Rick. I read the FDA changed the law as Rick mentioned. My personal feeling is why are they spending time and effort making sunscreen ratings LESS specific when they should be directing their resources in other directions? I agree with Rick. Do not stop living life. Wake up, shower and use sunscreen as your daily lotion. There is at least one company that sells clothing that protects you from the deadly rays. (I have their mail order catalog somewhere around here.) If you are out on a bright day...try to wear a hat. Make a fashion statement. I recently purchased a cool hat. It is called an australian canvas cooler. It is a light weight broad brimmed hat that is attrative. I think I look like an aussie cowboy when I wear it. HAHAHA. Keep smiling. Greg

auntcathy
Posts: 8
Joined: Apr 2002

Funny how everything changes when they tell you that you have cancer. I too have had a melanoma removed from my back. I found something interesting in your letter that I had not found anywhere else. The lower body core temp. Mine runs as low as 94 degrees at times. I assume this is a side effect but noone has given me a definitive answer. I am currently undergoing a Specific Active Immunotherpay treatment at Duke Universtiy Hospital. Basically, they are injecting me with irradiated cancer cells to try to stimulate my immune system to prevent any mestastisizing. They also refused to do a sentinel lymphnode biopsy on me as my doctor told me it had shown to be inconclusive in its results through past tests. Interesting. Any thoughts?

rlavery
Posts: 15
Joined: Apr 2002

Dear Auntcathy:
About the lower body temp.... the only thing I have found that would even correlate, is a condition called Wilson's Syndrome, that supposedly affects the thyroid gland. The syndrome is not prescribed to by "orthodox" doctors, it is in the realm of the holistics. It is thought to be caused by severe stress and trauma. Normal testing of thyroid hormones, the TSH, T3 and T4 usually show nothing abnormal, yet the core temp is low. Wilson's Syndrome therapy consists of a specially concocted slow relase T3 supplement. Of course, regular doctors won't even consider Wilson's and will only say that low temps are normal. I have yet to find any medical personnel who can address the low temp issue.
I have read about the Specific Active Immunotherapy therapy, but not in conjunction with melanoma. Most of the new approaches I have discovered to melanoma have been the vaccine route.
I think the major problem with cancer in general is that , like most of the medical industry, it is an industry that is too fragmented. Every doctor has a different approach to the same problem, especially when it comes to a disease they know absolutely nothing about. One can only hope that one can find the best of the best in time.
I'm actually considering moving to an area that has more incidences of the disease, just to be close to the doctors who want to solve the problem, treat the disease and treat the patient.
I wish you all the best Auntcathy.

happyme
Posts: 3
Joined: Jul 2002

Hi Rick,
I read your email, I have stage 1, I found a small mole in the middle of my chest that was changing colors in June. I had a biopsy and it's maligant melanoma. July they did a 2 1/2 inch margin on the center of my chest. I have a crater...ha ha ha.. They had to do a graft from the groin. I've been really weak and tired. The plastic surgeon said he got it all. They did not do anything else.

Within a week I got this lump in the bottom of my mouth. I just went to the dentist, he did xray and don't know if it's an infection or what or the salvitory gland? He gave me antibiotics and told me to go to oral surgeon to get checked out since I have melanoma....

I went to an oncology doctor last Friday. He took blood and I have a catscan this Thursday. I have to go to an dermatologist and check out the entire body and to a GYN to get off of my hormones...

We have to be agressive with these doctors.
Watch our own bodies and get lots and lots of tests. My neighbor died at age 41 in June from this disease, they said they got it all. Wrong.....his wife is really helping me, supportive and imformative. Things they should of done and wasn't told until too late. He had it on the heal of his foot....

The doctors say mine area in the chest is dangerous because it can spread to many parts of the body fast.... Well, I'm a fighter and want to see my new identical twins girls which were just born to grow up.
I have lots to do in my lifetime....Smile...

God Bless us. Give us strength, courage and faith for what battles maybe ahead.
Good luck

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