Beating Cancer

“BM, That's a good start and glad to hear the drugs are working. I remember one anti-nausea I didn't like though called Compazine. I got very hyper and nervous from it. I'm not sure if it was an allergy or what, but I never took it again after that experience.”

“how ironic, i was just one the phone with my mom when this thread jumped to the top...she just told me my great uncle has cancer...she didn' have any details though”

“After examining the bag containing the anti-nausea drugs, I can say with 100% certainty that I did not get anti-nausea drugs during my first treatment. Dumb asses!

thrifty - so far, nothing has sucked more in my life than being told this. I've mentioned it before, but I went 2-3 days not knowing what type of Cancer I had. Not knowing if I was on my death bed or not sucked to an indescribable level.

My SO took the initial diagnosis harder than I did. Actually, she took the final diagnosis harder than I did. She still does.

I feel for your Uncle, you, and your family.
last edited: 12/08/05 8:26:10 PM”

“It's amazing how many people have or know someone with cancer. I went thru my own Non-Hodgkins Lymphoma deal about 4 years ago, six months of chemo, all kinds of expensive drugs to make my bone marrow not fail, etc.
I did have wierd symptoms at night before I was diagnosed. I was also just tired a lot. No real specificity. Thank God I had a great general physician who listened and told me to get checked out, he didn't ignore my complaints.
I even hiked some during chemo. I did a short back pack trip to Coyote Gulch in Utah wih a good friend. Carried a pack down Crack in the Wall and out Hurricane Wash TH. Being bald had an advantage, no hair to muss or fuss under the hat.
Now, I actually feel stronger, and have done some of my best and most demanding backpacking post cancer/chemo.
Most of all I value every day, live it as much as I can as though it will be my last.
Hope to live a long time, but you never know.”

“It is amazing that so many people have or know someone with cancer. What is more amazing to me is that so many people are not old when they get it. At one of the cancer centers I go to many patients are young or middle age.”

“I think the American Rate right now is 1 in 3 Americans will get Cancer.

Get thee to the Doctor!”

“That's the rate I heard. Another one is that 1 in 9 women in the U.S. will get breast cancer.”

“your rates are correct but what rates are even greater are the rates for heart disease...i know these stats cause the company i work for sells insurance policies for both”

“I think the heart disease rate is 1 out of 2 people will get it. The heart can only pump blood for so long so if a 90 year old man dies of a sudden heart attack, do you call that heart disease or natural causes?”

“heart disease and heart attack are 2 different things...now heart disease often leads to a heart attack but a lot of attack's are unrelated to heart disease

how much wood could a wood chuck chuck if a wood chuck could chuck wood”

“I had to have a MUGA test before chemo. Tests heart condition.

Mine rocks.”

“I had one of those too. Also the lung function test. After chemo you might want to get a bone density test. All the drugs they give you may cause bone loss. I never knew that until I fractured my arm in a weird fall that should not have fractured the bone.”

“I didn't know my lung capacity sucked until I took that damn Lung test. I think that was why the Dr's were shocked I went on a BP trip 3 weeks earlier with no noticable problems.

That and all the #&%!$ing tumors in my body! :D

Thanks for the tip on bone density!

And thanks for the link Pathman.
last edited: 12/09/05 2:10:23 AM”

“Yeah, unfortunately I've been too close to too many people with cancer. My oldest brother died, 12 years ago at the age of 42 of lung cancer, my oldest sister is a survivor of breast cancer, she had about 5 years ago at the age of 48. My other brothers' wife died a year after my older brother from bone cancer. I'd have to say that's gotta be the worst, it really is so sad to see anyone to go through that. So that makes me, try my best, to take care of myself the best way I can, lots of hiking and phsyical activity! ;)

My best friends parents died within a year of each other a few years ago. They were both smokers.”

“My uncle was recently diagnosed with brain cancer. He is having a 14 hr surgery on Jan 6th to remove the tumor, he expects to lose hearing in his left ear. What I find more amazing about cancer these days is how many survivors I have met. It used to be a death sentence.

T”

“I've had a few moles that have made me uneasy lately. This thread has lit a fire under me to get that done.

BM - I'll be thinking about you. It sounds like you have a great attitude about the whole situation.”

“BM, My initial lung function test was good, but when it was taken again after bone marrow transplantation it dropped a little. Since I never had the test again I'm not sure what it is now. That's not bad when you consider all the things that they tell you might happen from cancer treatment. Chemo can have effects on your brain function, mainly memory and I did notice that and still do today.”

“Thanks, DH. Attitude is half the battle!

Rich - my lung function sucked because I have chock full o tumors sitting all over them, in, out, on. That's what initially freaked out my Primary care physician - My X-ray.”

“The chemo will get rid of them in a few months.”

“bearmagnet, I scanned the thread, but did not find. What is your diagnosis?

Cancer? Go ahead, make my day....





Bearmagnet, get one of the free LIVESTRONG binders. My admin asst's sister is using one I got in Austin and it is really helping her. Free except shipping and handling. Or do it online at the LIVESTRONG site.”

“That's great news bearmagnet and all you other survivors!

Birch - my friend Maggie has brain cancer too (anaplastic oligodandunglioma (sp?) stage 3. There's tons of scary stuff on the internet about the disease, but Maggie doesn't let that get to her. She believes in her treatment and her doctors and that give her a tremendous amount of hope for the future. I hope for the best for your uncle.”

“LOL!

Hodgkins Lymphoma, Stage IV. Had it 6-9 months, maybe longer. easily curable, 75% at stage IV, and responding remarkably well to the chemo.

I've always been very healthy and very proud of my immune system. Infectious agents rarely get a foot hold in me. I feel almost betrayed, ya know? HL is caused by an Antigen Presenting Cell (APC). For the curious:

APC's are scavenger cells of the immune system. They grab foreigners and basically sound the alarm.

Pisses me off that one of my immune cell lines went rouge.

Very happy that of all Lymphomas I got HL.”

“I have a slide and my x-rays! Bought 'em for practically nothing.

They showed me why the x-rays scared the crap out of them. Wish I could show you. The upper area looks like Lymphoma and the lower lung looks like Lung Cancer. Turned out it was HL in the process of spreading to the lower lung area.

God that day sucked. Its all been a lifetime. The X-ray tech wanted another shot of my lower lungs b/c my "lungs were so large". I watched too many people examine the x-ray.

Then I took the shots to my Dr. I could see them from the waiting room. The look in his eye, his discussion with the receptionist.

I could see in all these people that I might be F*ed.

Not a fun day.

I had two cigarettes after my Dr. told me it looked like lymphoma. Then headed to the ER.”

“Some doctors have a hard time telling you about a cancer diagnosis. Others will tell you right out like they are used to it because they probably are. Those are the ones you will probably find at a teaching hospital.”

“Yes. they were unfortunately blunt at george Washington. However, everyone did keep mum about Lung Cancer until it was ruled out.

My symptoms were not "classical HL" so they were checking for everything, including exotic infectious agents.

They X-ray also suggested possible infection.

None of them were oncologists so my "incessant itching" didn't even clue them in.”

“I do not think there is any good way to tell someone they have cancer. It falls in the :just DO it: category for me. Siblings and other relatives are survivors of many types of cancer. Me too. But I do not talk about it much.

Attitude. Go for it BearM.”

“I like the guys that are blunt. You have this and this is what we will do about it, is what I'd rather hear other than "maybe this or maybe that". I don't like mysteries so if they know something I'd like to hear about it. I had one doctor tell me your situation is very, very bad. At least he was honest and at the time I didn't need a doctor to tell me how sick I was and the direction things were going. I could feel it for myself.”

“BM What does the itching signify, if anything?”

“Thanks hiking. I have plenty of attitude. ;)

RichB - I guess it was annoying. All my symptoms; X-ray, & CT scan, and they were still unsure. It took a lymphectomy of the left cervical egg sized node for a final diagnosis.

They called it a biopsy but I call the surgical removal of a whole Lymph Node from my neck an "ectomy". They wanted the whole thing in case they had to run a battery of tests

The final irony was an oncologist finally came to see me to talk to me and was shocked none of the other Drs. had told me of the diagnosis.”

“tango - the itching is from swelloen lymph nodes irritating nerve endings.

I can't even describe the "need" to itch. I've itched countless areas of my limbs raw. You itch, you break several layers of skin and you continue itching it. My favorite itching is the bottoms of my feet. I can itch it hard as hell without breaking the skin.

I've got scabs all over my limbs and will probably have little scars from it.

The itching did spread to my torso but it's not as severe.

I take benadryl for it but not often, I can't find Non-drowsy benadryl. I'm fatigued as it is.

Cortizone creams help but I have to cover my body with the stuff.

Breaking skin from itching is OK now but I'm worried. If it doesn't end before I'm immunocompromised from the chemo I could be in serious trouble.

Oh well. One problem at a time.”

“Thanks for the insight BM. I say to you KICK A$$!!!”

“No problem and I will. Thanks!

I should also clarify that incessant itching appears to be a unique symptom of HL only.

It may occur in non-hodgkins lymphoma but I'm really not researching those.
last edited: 12/09/05 10:59:08 PM”

“Have you tried topical benadryl gel?”

“Human T-cell Lymphotropic Viruses (HTLV)

HTLV-I is associated with at least 2 kinds of disease manifestation; adult T-cell leukaemia and tropical spastic paraparesis.

The first one is 'mine'

Adult T-cell leukaemia - the evidence implicating HTLV-I as the aetiological agent of ATL includes the association of ATL with HTLV-I antibodies, the isolation of the virus, the finding of monoclonal integrated proviral sequences in leukaemic cells of patients with ATL, and epidemiological data. ATL, in the majority of cases, is a rapidly progressive fatal disease and affects 1 in 500 of persons infected by HTLV-I. It is characterized by diffuse lymph node infiltration, hypercalcaemia, leukaemia, skin infiltrates, and a positive HTLV-I antibody test. An incubation period of 15 to 20 years have been suggested for the development of ATL.

Tropical Spastic Paraparesis - the association of HTLV-I with TSP was discovered in 1985 while screening blood donors for HTLV-I antibodies in Martinique, West Indies. More than 75% of patients with TSP were found to have antibodies against HTLV-I and the association is further supported by the isolation of HTLV-I from the blood and CSF of patients with TSP. A chronic neurological disorder identical with TSP was found subsequently in other regions endemic for HTLV-I such as Africa and Japan, where TSP was named HTLV-I associated myelopathy. Clinically, TSP resembles multiple sclerosis, but lacks the intracranial nerve signs and remissions characteristic of MS. Initial symptoms are bilateral weakness and stiffness of the lower extremities. The course is slowly progressive, usually with bladder involvement, but shows considerable variations.”

“My main tumors were in my chest (substernal) and neck. I also had had Valley Fever with a fair sized stationary nodule in my R upper lobe of my lung that had them going for a while too.
I actually heard my diagnosis in the surgeons waiting room post biopsy. I was sitting near the door and overheard him tell the nurse " I need room so and so because I have to tell her (me) that she has lymphoma." So much for HIPPA. I almost walked out, but I was curious to see what he had to say. Then I went out, got my own oncologist, a great guy who kicked a$$$ in my opinion. My words to him--give me enough chemo to kill this b@!!tch, but if I end up in the hospital with tubes everywhere, make sure I have some strichnine or a .357 magnum close by. I won't live that way.
He worked with me, and I responded well to chemo, felt better several weeks after the first go round.”

“Tango, are you serious?????!!!!!”

“That's great Red!!!! Where in AZ?
last edited: 12/10/05 8:19:36 AM”

“Yep got a letter a few years ago when I donated blood. Can't donate anymore obviously.”

“You tested positive for HTLV-1?”

“Now I understand. HTLV-1 postive on the test, you were counseled on the potential consequences of HTLV-1. I thought you meant you had a possible T-cell leukemia.

If you have not had any significant time in Japan or Caribean, no transfusions, IV drug abuse, or other risk factors, your risk is pretty low. The test could be a false positive.”

“Yes BM, and none of those risk factors you listed Pathman. It is only a possibility. My Dr. didn't seem too worried about it. Still my family history of cancer....”

“BM, I haven't had any doctor give me a cancer diagnosis without a biopsy being done first even though they probably knew what they were looking at was cancer. I just had this happen yet again last week when I was diagnosed with tongue cancer. 4 doctors looked at the lesion, but none would say what it was before a biopsy was done.

Did you try oral steriods for your itching? I had terrible itching from an allergy to CT scan dye with welts all over my body and that was the only thing that helped.”

“Yeah. That's what I was gonna say. If it was one test for HTLV-1 Ab, I would demand another test for virus.

I would demand a second test for virus in case that was also a false positive.”

“RichB - yeah, I guess they need to be sure. When I first went to the ER one of the "student" Drs was trying so hard to impress her superiors that she was throwing out her diagnosis of "lymphoma" left and right at her superior. This was having a devestating effect on my girlfriend, Dani. I gave the head Physician such a dirty look that the "student" dissapeared soon after.

My Dr. just told me to take Benadryl & the topical. The steroid to help with nausea is a corticosteroid (Dexamethasone) so hopefully that'll give me some needed relief.”

“BM - you need a hand with anything then let me know. I'm not far away.”

“Thanks Y2. I really appreciate that!”

“The steroid that worked for my itching was 4mg Methylprednisolone. It comes in a week long dose called a dosepack. It's powerful and has some bad side effects if taken long term, but for the short term it did work until my itching cleared up.”