Tilted Forum Project Discussion Community  

Go Back   Tilted Forum Project Discussion Community > The Academy > Tilted Life


 
 
LinkBack Thread Tools
Old 06-23-2008, 06:52 AM   #1 (permalink)
 
Sticky's Avatar
 
The Cancer Thread - First hand Experiences

I could not think of a gentler way to put the title of the thread but still be as clear as possible.

I would like this thread to be a place where TFP members can discuss their personal experiences before, during, and hopefully after.

I don't want this to be the place where other members come by to give their well wishes. I would rather this not be a thread of second hand accounts but I do understand that some second hand accounts may be helpful to hear. The issue with the second hand accounts is they can't really convey as well what things are really like for the person going through it as a first hand account can.

I am really hoping that this thread will be a place where we share our first hand expereinces so that those of us going through it can get a better idea of what a certain type of test feels like, some questions to ask their doctors, and/or of what treatment is like.

I have not seen a similar thread so I decided to create it.


So, I was just diagnosed with Hodgkins Lymphoma.
I found a lump on my neck a few weeks ago. I went to see a friend of mine who is a doctor (GP) and is actually partners with my doctor at a clinic. (my friend is not my doctor because for some things it may not have been comfortable). Anyway he saw me late one night at his clinic and spent a an hour and a half talking to me about it. Him and his partner (my doctor) then did what ever they could to get things moving and make things happen as fast as possible.
Waiting for a diagnosis is tough - you mind starts imagining all the possibilities and you can't think of anything else - so they wanted to help get to that point as fast a possible.

They scheduled me for an ultrasound of my neck for the next day at a radiologie clinic. My friend, the doctor, showed up at the clinic to be with me and meet with the radiologist - that was so nice.
The radiologist suggested a chest x-ray as well - so we did that on the spot.
The x-ray was clear but the ultrasound showed multiple nodes in my neck.

The next step was to get an appointment with a Head and Neck specialist and have a biopsy done. My friend and my doctor called around the hospital they sometimes work in and got me in to see the head and neck resident for a needle biopsy.

My sister is also good friends with the best head and Neck surgeon in the city so, a few other tests, an open biopsy, and a few weeks later I found out I have Hodgkins.
After finding the lump this is the diagnosis I was supposed to hope for - as if anyone would want to hope for that. This is the best diagnosis out of all the possible diagnoses. Hodgkins is highly treatable and most (somewhere in the 90%) people recover.

We are now working on the staging to figure out how far along I am. This will help determine what the treatment should be and how long it should be.
The fact that I did not present with any other symptoms and I am otherwise a very healthy adult in my lower 30s is a good indicator.

I would be glad to answer any questions anyone has about any tests/scans I have done and what they feel like or how I feel going through this if it will help you cope with something you are dealing with.

I will likely have questions for others about their expereinces so that I have a better idea of what to expect.

I hope that there are no others here on TFP going through something similar but if there are then maybe this could be a good place for discussion.
__________________
Sticky The Stickman
Sticky is offline  
Old 06-23-2008, 07:18 AM   #2 (permalink)
Gentlemen Farmer
 
j8ear's Avatar
 
Location: Middle of nowhere, Jersey
I found my attempt to deal with ~my~ cancer here a few years back very unproductive. So, I'm here to say, if no one else, you've me. That said, I was extremely lucky and had only "thyroid cancer" (papilary carcinoma) which is easily treated, and usually very effectively managed afterword.

I'm with you in mind body and spirit, Sticky...I went through much of what you did...ultra sound, Fine Needle Biopsy (a few of them), but nothing ever conclusive...it turns out that regardless when someone feels cysts in your thyroid and an ultra sound sees same, benign or malignant the thyroid comes out.....it was only after the entire thyroid comes out and goes under a microscope that they conclusively diagnosed papilary carcinoma. This meant some radioactive iodine to kill any left over carcinoma cells.

Anything I can offer with regards to my experiences with the process or dealing with loved ones, your and their emotions, I'd be more then happy.

best,

-bear
__________________
It's alot easier to ask for forgiveness then it is to ask for permission.
j8ear is offline  
Old 06-23-2008, 08:20 AM   #3 (permalink)
 
Sticky's Avatar
 
I am sorry to hear that and thank you.

For me the needle biopsy showed malignant cells but a needle biopsy was not enough to be conclusive about the type and subtype of cancer even though they were leaning towards a lymphoma.
I had an open biopsy done under local anasthetic where they took out a nice chunk of the lump. This was enough for the pathologists to determine that it is Hodgkins and to determine the subtype as well.

Are you doing well now?
__________________
Sticky The Stickman
Sticky is offline  
Old 06-23-2008, 10:44 AM   #4 (permalink)
Gentlemen Farmer
 
j8ear's Avatar
 
Location: Middle of nowhere, Jersey
Funny you should ask...I just, and I mean just returned from my endocrinologist and I am indeed doing just fine. In fact since I'm approaching four years cancer free, I am to the point where any concerns for metasizes or recurrance are now about the same as someone who had not had cancer.

How about you Sticky? How are ~you~ doing? I know this certainly puts your entire life into a peculiar type of focus. I'm not sure exactly how things were for me, but I always approached things from a plan for the worst, hope for (and do everything you can to ensure) the best. So far so good, Knock on wood. I try to live everyday like it might be my last, and try to make sure that my daughters (there are two j8earette jrs now) are loved and cared for. They're certainly loved, and I'm working my ass off to make sure they're cared for.

-bear
__________________
It's alot easier to ask for forgiveness then it is to ask for permission.
j8ear is offline  
Old 06-23-2008, 10:54 AM   #5 (permalink)
Junkie
 
highthief's Avatar
 
Location: Ontario, Canada
Wow, Sticky, sorry to hear of this. I have nothing to offer other my best wishes for a speedy and full recovery.

Edit: Just saw the bit about well wishers - sorry, again.
__________________
Si vis pacem parabellum.

Last edited by highthief; 06-24-2008 at 05:42 PM..
highthief is offline  
Old 06-24-2008, 01:31 PM   #6 (permalink)
The Reverend Side Boob
 
Bear Cub's Avatar
 
Location: Nofe Curolina
I was diagnosed with papillary carcinoma at age 20.

Finding it was a fluke. Bloodwork was normal, but my sister had been diagnosed years earlier. On a whim, she asked me to get an ultrasound done. That's when it was first discovered.

Same routine as mentioned above, fine needle biopsy, etc.

I had the surgery done at Yale Hospital by the best surgeons. Total thyroidectomy, partial parathyroidectomy, and a fair amound of surrounding tissue, especially below the collar bone, removed as well, because it had spread to the lymph nodes.

Again as before, it was followed up with radioactive iodine, largest outpatient dose allowed.

I just had a follow up ultrasound and total body scan performed. I am indeed still cancer free for another year until the next scan.



I will say this though, no matter what, just try to keep a positive outlook. Every member of my family was sobbing, and I was the last to find out. Never was I scared of the cancer, or upset about it, largely attributed to being desensitized by both my father's and sister's experiences.

I was however, very irritated, and still am, that I had to deal with it. I missed weeks of schooling, the constant doctors appointments, the pain of the night staff taking me off a 13 hour morphine drip to give me tylenol in pill form, and even just a few weeks ago, my thyrogen injections and follow-up scan could only be scheduled the week I was supposed to go to Las Vegas. It's a pain in the ass, and it always will be, from the pills I have to take every day for the rest of my life, to every other aspect associated with once having had it, and the possibility of it recurring. But like everything else, just laugh about it, and keep on keepin' on.
__________________
Living in the United Socialist States of America.
Bear Cub is offline  
Old 06-24-2008, 02:07 PM   #7 (permalink)
Une petite chou
 
noodle's Avatar
 
Location: With All Your Base
i understand the concept of not wanting a well-wisher or second/third party thread, but i'm a palliative and hospice care social worker with kids from birth to 21 if you ever have any questions or need any thing/resources/thoughts.
i've worked with probably 30 or so kids in four years with cancer and walked through a lot of different journeys with a multitude of outcomes.
__________________
Here's how life works: you either get to ask for an apology or you get to shoot people. Not both. House

Quote:
Originally Posted by Plan9
Just realize that you're armed with smart but heavily outnumbered.
The question isn’t who is going to let me; it’s who is going to stop me. Ayn Rand
noodle is offline  
Old 06-24-2008, 05:45 PM   #8 (permalink)
Junkie
 
I'm sorry to hear that. I just want to say, if you need or want to talk, please feel free to PM me.

Before I tell my story, I want to warn you that it's not the kind of thing you want to read just as you're starting

As to my experience, I had a rare and aggressive type of cancer between the ages of 15-20. During that time, I had finished all of the treatments just to have it recur within a year of the completion. I've lost track of how many times I have been told that I was going to die, be it from surgery, infection, or from a necessary part of the treatment. I've had 9 surgeries and countless procedures (which I still have every couple of months). I still have some trouble with the nerve damage in my lower legs and feet.

I'm going to go through a few of the tips that I would have liked to know before I had started:
  • Try different anti-nausea regimens, but what worked best for me was Zophran and Reglan with Benadryll being used as an emergency backup.
  • Become OCD about washing your hands and what you touch. Sure, you wash your hands regularly, but not everyone else does. Since your immune system will be lowered, you'll want to make sure there's no chance of catching anything.
  • A lot of what goes on can be tough, but don't be proud or stupid, go along with it no matter how unpleasant, it will save you from harder challenges down the road.
  • As crappy as everything going on is, stay as pleasant as you can with the doctors and especially the nurses. I can't emphasize this enough. They're doing all that they can to help you, and they will no matter what, but if you treat them well, they'll be more willing to go out of their way for you. I can't emphasize this point enough.
__________________
"Fuck these chains
No goddamn slave
I will be different"
~ Machine Head
spectre is offline  
Old 06-24-2008, 06:51 PM   #9 (permalink)
The Reverend Side Boob
 
Bear Cub's Avatar
 
Location: Nofe Curolina
Quote:
Originally Posted by spectre
As crappy as everything going on is, stay as pleasant as you can with the doctors and especially the nurses. I can't emphasize this enough. They're doing all that they can to help you, and they will no matter what, but if you treat them well, they'll be more willing to go out of their way for you. I can't emphasize this point enough.
I will second this.

The nurses at the hospital that did my radiation bent over backwards for me, especially when it came to the insurance company. On the day of my final scan after radiation, I brought flowers for the ladies in the office. They deserve a little appreciation every so often.
__________________
Living in the United Socialist States of America.
Bear Cub is offline  
Old 06-25-2008, 04:50 AM   #10 (permalink)
 
Sticky's Avatar
 
j8ear. I am doing very well. I am otherwise healthy and I am approaching this very positively. I don't know, however, if I would feel them same way if it was a different type of cancer (one with a prognosis that is not as positive).
I was just going through the process of getting life insurance when all this happened - this will definately screw that up.
And I have to finally get a will done. I was also just about to do that as well. This will just speed up the process.

highthief - I don't want to tunr away any well wishes, I just wanted this thread to be a help to those of us going through this by being able to share our expereinces. Thanks though.

Bear Cub - I know what you mean about inconvenience. I already had to cancel a big month long trip the family was planning on taking this summer. The kids are really upset. They are old enough to be up set but still too young to completely understand the reasons why. We are postponing it. We can change the flights 3 times for the price it costs to cancel outright so if we need to moe it again we will.

noodle - I know that there are plently of people that will be able to add value to this thead for a second/third hand perspective but somethings are probably hard enough to releate even if they are experienced first hand. I think that we will welcome second/thrid hand accounts when they are relevant but I just did not want it to be the norm.
I think what I am really looking for is to be able to ask a question like "what does a bone marrow biopsty feel like" or "how did you feel after radiation or chemotherapy?". I hope eveyone understands what I am trying to get at.

spectre and Bear Cub, thanks for the advice.
__________________
Sticky The Stickman
Sticky is offline  
Old 06-29-2008, 05:59 PM   #11 (permalink)
 
Sticky's Avatar
 
I had another CT (abdominal and Pelvis) and pulmonary function test. These tests are being done for staging purposes. Just waiting for the results.

A couple of questions:
- Have any of you ever had a PET/CT? A couple of radiologists I know are suggesting it as one of the best tools available for Lymphoma.
- Was fertility a concern for you? From what I understand one of the possible side effects of chemotherapy is infertility.
__________________
Sticky The Stickman
Sticky is offline  
Old 06-29-2008, 07:14 PM   #12 (permalink)
Junkie
 
Quote:
Originally Posted by Sticky
Have any of you ever had a PET/CT? A couple of radiologists I know are suggesting it as one of the best tools available for Lymphoma.
I've had a lot of CTs and MRIs as well as a couple of PET scans.

A CT scan is really easy. It's kind of boring, but it's over fairly quickly.

MRI can make you a little claustrophobic and is annoying because it's pretty noisy. Still, it's an easy test unless you have trouble with enclosed spaces. If you do, let them know and they'll give you something to help relax you.

PET scan is another boring and easy one.

Quote:
Originally Posted by Sticky
Was fertility a concern for you? From what I understand one of the possible side effects of chemotherapy is infertility.
It was, but then again, death can cause some trouble with fertility too. If you're concerned about it, you can ask them about possibly giving a sperm donation and having them keep it for the future. Just be ready if you go that route because it it's probably a little pricey.

Mention anything at all that you're worried about to your doctor or nurse, they've already fielded these questions many times and they will be able to give you all of your options.

Good luck!
__________________
"Fuck these chains
No goddamn slave
I will be different"
~ Machine Head
spectre is offline  
Old 07-04-2008, 11:04 AM   #13 (permalink)
 
Sticky's Avatar
 
I am going to have a PET scan done. The hematologist wants it to be done to make a final decision on staging. Depending on the results I may have to have a bone marrow biopsy done.

Ever have a bone marrow biopsy? How was it?

I found out what the chemotherapy drug(s) will be abd apperently they do not affect fertility. I had already gone to the fertility/reproductive clinic-sperm bank. I think it is still a good idea just in case.
__________________
Sticky The Stickman
Sticky is offline  
Old 07-04-2008, 10:17 PM   #14 (permalink)
Junkie
 
Quote:
Originally Posted by Sticky
Ever have a bone marrow biopsy? How was it?
I'm not going to lie to you, it's pretty unpleasant. It's not that it's painful, it's just a bizarre and uncomfortable feeling. Basically, you lie down on a table and they stick a large needle into the back of your hip bone just along your waist. The thing is, there's not a lot of fluid in there, so they need to kind of dig around for it. Again, it doesn't really hurt too bad, but it's a very strange feeling as the needle kind of scrapes along the bone.

Please, don't let this scare you, it's really not that bad, but I don't want to BS you, since I'm sure that you're more than aware by now that most things about treatment can be unpleasant.

Just hang in there and good luck.
__________________
"Fuck these chains
No goddamn slave
I will be different"
~ Machine Head
spectre is offline  
Old 07-05-2008, 09:08 PM   #15 (permalink)
 
Sticky's Avatar
 
I can (and will have to) deal with anything.
Unpleasant is OK I guess.

I needed to hear ti from someone who has had it done to them. Everyone (people I have spoken to and sites on the web) say it is uncomfortable but none of them have actually been through it.

About how long do they take to do it? How long do you have to deal with the unpleasantness.
When I had the needle biopsy, the doctor stuck the needle in and moved around and in and out for a while trying to get enough of a sample. I guess it is similar onyl without the scraping against the bone.

Were you sore afterward?
__________________
Sticky The Stickman
Sticky is offline  
Old 07-05-2008, 09:26 PM   #16 (permalink)
Junkie
 
It's only a few minutes at worst. There's really not too much soreness because they usually do numb the area first, it's just a really bizarre sensation. Spinal taps are much troublesome. For those, there's less discomfort, but you *have* to stay laying down for as long as the doctor says, otherwise, it feels like your head will explode. (obviously, it won't, but it's a very unpleasant feeling).

Stay strong, you're doing well.
__________________
"Fuck these chains
No goddamn slave
I will be different"
~ Machine Head
spectre is offline  
Old 07-09-2008, 06:19 AM   #17 (permalink)
Upright
 
milkmilk's Avatar
 
..

Last edited by milkmilk; 02-17-2011 at 04:35 AM..
milkmilk is offline  
Old 07-09-2008, 03:26 PM   #18 (permalink)
Tilted
 
I lost my mom to it so it's a bit of a fear word to me. You know, those words that makes you wince when you hear it.

I also have to admit that I'm bit of a conspiracy theorist in that I'm sure that they *have* found a cure, but where's the money in that? You cure a cancer patient and you have no money coming in from all the treatment and the hospital time and the specialists and the pills and the experiments and so on and so forth.

Cancer is scary to me. Very much so.
kate jack is offline  
Old 07-09-2008, 04:22 PM   #19 (permalink)
Junkie
 
Quote:
Originally Posted by kate jack
I also have to admit that I'm bit of a conspiracy theorist in that I'm sure that they *have* found a cure, but where's the money in that? You cure a cancer patient and you have no money coming in from all the treatment and the hospital time and the specialists and the pills and the experiments and so on and so forth.
The problem is that not all cancers are equal. Curing one cancer doesn't mean you cure them all. Sometimes, one course of treatment may work for one person but not another.
__________________
"Fuck these chains
No goddamn slave
I will be different"
~ Machine Head
spectre is offline  
Old 07-14-2008, 07:14 PM   #20 (permalink)
 
Sticky's Avatar
 
I had the PET scan on Friday. The only bad part about it was that I really needed to pee really badly even though I went before the test.

I had a bone marrow biopsy today. Not my favorite procedure.

I start chemo tomorrow. the only thing I am realy afraid of is the unknown about how I will react to the chemo.

I am tired and I am going to go to sleep but if I feel up to it in the next few days I will update the thread.
__________________
Sticky The Stickman
Sticky is offline  
Old 07-15-2008, 04:13 PM   #21 (permalink)
Junkie
 
You're doing great, just stay positive. Chemo will be pretty easy the first few times. It's something that builds slowly. You may not be nauseous the first few times, but a few weeks into it, you likely will. Experiment a bit with the nausea meds.
Quote:
Originally Posted by spectre
Try different anti-nausea regimens, but what worked best for me was Zophran and Reglan with Benadryll being used as an emergency backup.
Some places also use Atavan, use that as a backup as well. It will knock you out.
__________________
"Fuck these chains
No goddamn slave
I will be different"
~ Machine Head
spectre is offline  
Old 07-16-2008, 11:25 AM   #22 (permalink)
 
Sticky's Avatar
 
So far I am doing OK.
I am not feeling 100% but I am not feeling horrible.

It is interesting to hear that the first few times can be pretty easy. I have been sitting here waiting for the other shoe to drop (waiting to start feeling really sick). So I can really expect how I feel this time to be an indication of how I will feel the next time, I guess.

as for anti-naisea drugs, I am using Zophran as well and I was perscribed another one that I can take along with it. The Dr. said I should just automatically take the Zophran for the first 48hrs and not wait for symptoms. I am not sure now if it working or if I have just not had any nausea.
__________________
Sticky The Stickman
Sticky is offline  
Old 07-16-2008, 05:27 PM   #23 (permalink)
Junkie
 
Quote:
Originally Posted by Sticky
So far I am doing OK.
I am not feeling 100% but I am not feeling horrible.

It is interesting to hear that the first few times can be pretty easy. I have been sitting here waiting for the other shoe to drop (waiting to start feeling really sick). So I can really expect how I feel this time to be an indication of how I will feel the next time, I guess.

as for anti-naisea drugs, I am using Zophran as well and I was perscribed another one that I can take along with it. The Dr. said I should just automatically take the Zophran for the first 48hrs and not wait for symptoms. I am not sure now if it working or if I have just not had any nausea.
Glad to hear you're doing okay.

For me, it wasn't until the third or fourth treatment before I was nauseous and the second when I started losing my hair. It was 3 weeks between treatments for me. Keep taking the Zophran, even if you don't need it just like he said.

The best thing you can do is rest. The chemo will kick your ass, so don't try to be overly tough about, that'll do more harm than good.

You're doing great.
__________________
"Fuck these chains
No goddamn slave
I will be different"
~ Machine Head
spectre is offline  
Old 07-17-2008, 07:48 AM   #24 (permalink)
Devoted
 
Redlemon's Avatar
 
Donor
Location: New England
I was reading a massage therapy blog, and found a discussion of this article: Living with Cancer: Eight Things You Need to Know from Scientific American. I hope it contains information useful to you.
__________________
I can't read your signature. Sorry.
Redlemon is offline  
Old 07-17-2008, 10:30 AM   #25 (permalink)
 
Sticky's Avatar
 
Quote:
Originally Posted by spectre
Glad to hear you're doing okay.

For me, it wasn't until the third or fourth treatment before I was nauseous
Was it overwhelming (nausea all the time)?
Did the Zophran keep it in check or just reduce the symptoms?

Which chemo drugs were you on? I am on ABVD which is the standard right now for Hodgkin's
__________________
Sticky The Stickman
Sticky is offline  
Old 07-17-2008, 03:47 PM   #26 (permalink)
Junkie
 
Quote:
Originally Posted by Sticky
Was it overwhelming (nausea all the time)?
Did the Zophran keep it in check or just reduce the symptoms?

Which chemo drugs were you on? I am on ABVD which is the standard right now for Hodgkin's
I was on 5 different chemo drugs at the time. I would receive 3 of them for about 8 hours a day for 5 days. I'd then have three weeks off, followed by 2 chemo drugs for 8 hours a day for 3 days. Three weeks off, etc. The treatments were always on an inpatient basis. I can't remember the names of all of them, but the ones I do remember are VP16, Vinchristine, and Adriamiacin.

The nausea was at its worst as I was being given the chemo as well as for a few hours after. The zophran did a lot, but after a while it did get harder. That's why you need to have them experiment with the other anti-nausea medications to see what works best for you. What you're going to want to do is keep one of those wash basins near you, even once you go home. Sometimes, you'll just have a bad day and it will really be nice not having to go running towards the bathroom to throw up.

You're also going to become a testament to Pavlov. To this day, I still have a few triggers that can make me a little queasy. That's always kind of odd since mine were pretty disjointed. They were one particular Burger King commercial that was always playing at that time, the smell from a few of the foods they served at the hospital, and a specific shade of green near orange (one of the chemo drugs was orange and they had a green bag over it since it was photosensitive).
__________________
"Fuck these chains
No goddamn slave
I will be different"
~ Machine Head
spectre is offline  
Old 07-18-2008, 05:28 AM   #27 (permalink)
Psycho
 
serlindsipity's Avatar
 
Location: Boulder Baby!
Sticky, i imagine you can find a list of side effects from chemo all around this world wide wonderweb. Personally watching my mom go through chemo, the shit destroys everything in your body to some level or another. Being your repo organs are pretty sensiive, i would not be surprised at them being pickled. As such, ask your doc for alternatives to chemo or possibly storing some before you get into it. Or adoption. becuase it will be ugly and destructive.

and i wish you the best. you will have a support network here, becuase sympathy is not enough. friendship and hope is what we will always give.
__________________
My third eye is my camera's lens.
serlindsipity is offline  
Old 07-18-2008, 11:27 AM   #28 (permalink)
Psycho
 
Location: venice beach, ca
best possible wishes. that said... take EVERYTHING your doctors say with a grain of salt and as much skepticism as possible given the situation. my mother caught some malignant cancer under her arm early, and i mean early.... the docs even admitted they were pretty sure they got the whole patch out just in the biopsy to determine it was malignant.

from there they put her through radiation "just in case", and looking back after the research i've done im convinced it was unnecessary... and it took a lot from her. i'm thinking years off her life. you'd like to think that doctors are above ordering unnecessary things like mechanics can tend to do for your car, but if you go to a surgeon, they're apt to propose surgery because it's what they know, and they DO reap benefits from every job they do. just make sure you look down all the other avenues of therapy and treatment, including eastern and holistic ones, and try the LEAST harmful ones first.

best of luck.
__________________
-my phobia drowned while i was gettin down.
high_jinx is offline  
Old 08-04-2008, 09:43 AM   #29 (permalink)
 
Sticky's Avatar
 
So I was not able to have my second treatment last week.
Had the standard bllod tests before and they indicated that my neutrophil levels were too low. This meant two things:
- Postponment of treatment - I have my second treatment tomorrow
- I will need to take a drug in-between treatments to help keep my neutrophil levels up

A low neutrophil (and in more general terms a low white blood cell count) means increase risk of infection. Even minor infections can become very hard to treat and eventually life threatening when your body does not have the means (white blood cells) to combat the infection.
__________________
Sticky The Stickman
Sticky is offline  
Old 08-04-2008, 04:36 PM   #30 (permalink)
Junkie
 
Quote:
Originally Posted by Sticky View Post
So I was not able to have my second treatment last week.
Had the standard bllod tests before and they indicated that my neutrophil levels were too low. This meant two things:
- Postponment of treatment - I have my second treatment tomorrow
- I will need to take a drug in-between treatments to help keep my neutrophil levels up

A low neutrophil (and in more general terms a low white blood cell count) means increase risk of infection. Even minor infections can become very hard to treat and eventually life threatening when your body does not have the means (white blood cells) to combat the infection.
That will happen pretty often. I know it can be a bummer because it's another delay, but don't let it get to you.

Keep your hands clean and be meticulous. Always wash your hands before you eat and never touch a doorknob on your way out. It sounds paranoid, but it will make a difference since a lot of people don't wash.

Keep on fighting.
__________________
"Fuck these chains
No goddamn slave
I will be different"
~ Machine Head
spectre is offline  
Old 08-05-2008, 03:35 PM   #31 (permalink)
Yarp.
 
Dammitall's Avatar
 
Not speaking directly from firsthand experience, but I lost my cousin to melanoma two months ago and my partner lost her mom nine years ago to bile duct cancer. Now my partner has just recently gone in to the doctor to have some of her moles looked at, and one she had removed and biopsied came back with "atypical" results. Having lost several other members of her family to cancer some years ago and just recently witnessing what my cousin went through in the last month of her life, my partner is very scared. Fortunately she was able to get an appointment with a dermatologist in two weeks to have the pathology report reviewed and her other moles looked at. Until then, she has told me she expects to be told the very worst. All we can do is wait, and I will be as supportive and positive as I possibly can be.

I don't really know what else to say but figured this thread would be an appropriate place to post this.
__________________
If one million people replaced a two mile car trip once a week with a bike ride, carbon dioxide emissions would be reduced by 50,000 tons per year. If one out of ten car commuters switched to a bike, carbon dioxide emissions would be reduced by 25.4 million tons per year. [2milechallenge.com]

Quote:
Originally Posted by roachboy View Post
it's better if you can ride without having to wonder if the guy in the car behind you is a sociopath, i find.
Dammitall is offline  
Old 08-11-2008, 06:10 AM   #32 (permalink)
 
Sticky's Avatar
 
Thanks spectre

Spinelust. The hardest part is the definately the waiting. I was lucky since the doctors that I needed were freinds or friends of friends and things moved really fast for me but when I was waiting it was really tough.
I did not expect the worst, but I was realistic about it. I did not dillude myself into thinking that it was nothing but I also did not just expect that the worst possible outcome was what it was going to be.

That is also not to say that while I was first waiting to see a doctor I read many things on the internet that scared the crap out of me. Even with very specific symptoms, you can plug those into a medical site and get a wide range of results back most of which can be ruled out with a few simple question from a professional or some tests. This is why the waiting sucks. Until one sees a professional who knows the diagnostic steps they can spend hours/days/weeks/months thinking up the most horrible things. Our minds are very powerful - until I was able to speak to a doctor I could not focus on anything (work, family...anything). I hope the time passes quickly.




Over the last few days my arm has been hurting me a bit. More specifically I am sure that it is the vein that I received the chemo through (two treatments through the same vein so far) that is sore. I can feel that the part of the vein where it is near the surface of my skin (the part that they put the IV in) is hard and tight. The questions that I am going to ask the doctor are
- Is any vein damage permanent?
- Should I be switching veins each time?
- Is there anything I can do to reduce damage to the vein?

I want to avoid a port (catheter, direct line, whatever they are called). I would just rather not have one.
__________________
Sticky The Stickman
Sticky is offline  
Old 08-11-2008, 09:39 PM   #33 (permalink)
Junkie
 
Quote:
Originally Posted by Sticky View Post
Over the last few days my arm has been hurting me a bit. More specifically I am sure that it is the vein that I received the chemo through (two treatments through the same vein so far) that is sore. I can feel that the part of the vein where it is near the surface of my skin (the part that they put the IV in) is hard and tight. The questions that I am going to ask the doctor are
- Is any vein damage permanent?
- Should I be switching veins each time?
- Is there anything I can do to reduce damage to the vein?

I want to avoid a port (catheter, direct line, whatever they are called). I would just rather not have one.
I know how you feel, but get the port/catheter. I had a central line, which got infected and it had to be removed. Even though that sounds scary, without the line, they gave me further treatments and it caused severe nerve damage.

I once declined to take a feeding tube because I didn't want any more scars. As a result, I ended up with side effects to the alternative which ended up with one of the larger scars that I now have.

And yes, the veins should heal, but it takes a while. I had a large bruise from a collapsed vein that took years to heal.

The port/catheter/line can be a pain to deal with, but they're an option for a reason. Take them up on it, it makes a difference.

Good luck.
__________________
"Fuck these chains
No goddamn slave
I will be different"
~ Machine Head
spectre is offline  
Old 08-12-2008, 05:54 AM   #34 (permalink)
 
Sticky's Avatar
 
Ya, my concern is the infection.
__________________
Sticky The Stickman
Sticky is offline  
Old 08-12-2008, 08:11 PM   #35 (permalink)
Junkie
 
Quote:
Originally Posted by Sticky View Post
Ya, my concern is the infection.
It's a valid concern, and the work to prevent it can be a pain in the ass, but without it, it can cause more harm than good. Once your veins start collapsing, and they will very often as time goes on, you run the risk of developing neuropathy. That's what caused my nerve damage which was the single most painful and horrible thing I had to go through. I'm not trying to scare you here, but the danger is real, and I'd hate to see someone else have to go through it if they don't have to.
__________________
"Fuck these chains
No goddamn slave
I will be different"
~ Machine Head
spectre is offline  
Old 08-14-2008, 06:11 AM   #36 (permalink)
 
Sticky's Avatar
 
Thanks.
I am going to disucss the issue with my doctor before the next treatment.
__________________
Sticky The Stickman
Sticky is offline  
Old 10-27-2008, 01:16 PM   #37 (permalink)
 
Sticky's Avatar
 
OK so in order to deal with the vein problem that I had after my second treatment I have been jumping from vein to vein.
I have not used the same vein a second time (since the issue I had). I do plan to use some of the veins a second time eventually but I am just trying to wait as long as possible.

Unfortunately, as I wrote this, I just realized that I know which veins I used but I can't remember which weeks I used them. Damn.

I have had 7 treatments so far and I have having my 8th tomorrow. That means that assuming that everything goes as planned I wil only have 4 more after tomorrow. It still feels like a long way to go but it is very nice to counting down.

After tomorrow's treatment (8 of 12) I will have a scan to see if everything is progressing as it should.
__________________
Sticky The Stickman
Sticky is offline  
Old 02-11-2009, 01:30 PM   #38 (permalink)
 
Sticky's Avatar
 
Good News!

The latest update is that I finished my treatments at the end of December.

The CT scan I had at the begining of November showed that none of the nodes had grown and some were gone. This is good. This does not mean anything specific it is just a good indicator I really had to wait for PET scan results. I had to wait for a certain period of time aftger all treatments were done to be able to have a PET scan.

I had the PET scan last week and another CT scan a few days before that.
I went to my doctor yeasterday to discuss the reuslts. The CT Scan basically showed the same thing as the last one and the results of the PET are that there is no eveidence of disease.

This means that as it stands today I am clear.
I now need to go back to the doctor every 2-3 months for follow-up. I will have further scans in the future to make sure that everything is in check.

It is all very surreal. Not the reulsts only, but the whole experience.
It all started becuase I felt a lump on my neck. I really did not have any other symptoms. I never felt sick so it was always weird to think that I had cancer. Becuase of that it is weird now to think that I am better.
__________________
Sticky The Stickman
Sticky is offline  
Old 02-11-2009, 01:48 PM   #39 (permalink)
Functionally Appropriate
 
fresnelly's Avatar
 
Location: Toronto
Good to hear!
__________________
Building an artificial intelligence that appreciates Mozart is easy. Building an A.I. that appreciates a theme restaurant is the real challenge - Kit Roebuck - Nine Planets Without Intelligent Life
fresnelly is offline  
Old 02-12-2009, 08:28 AM   #40 (permalink)
Yarp.
 
Dammitall's Avatar
 
Sticky, that's great news. Here's to continued health and wellness!
__________________
If one million people replaced a two mile car trip once a week with a bike ride, carbon dioxide emissions would be reduced by 50,000 tons per year. If one out of ten car commuters switched to a bike, carbon dioxide emissions would be reduced by 25.4 million tons per year. [2milechallenge.com]

Quote:
Originally Posted by roachboy View Post
it's better if you can ride without having to wonder if the guy in the car behind you is a sociopath, i find.
Dammitall is offline  
 

Tags
cancer, experiences, hand, thread


Posting Rules
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

BB code is On
Smilies are On
[IMG] code is On
HTML code is Off
Trackbacks are On
Pingbacks are On
Refbacks are On



All times are GMT -8. The time now is 04:33 PM.

Tilted Forum Project

Powered by vBulletin® Version 3.8.7
Copyright ©2000 - 2024, vBulletin Solutions, Inc.
Search Engine Optimization by vBSEO 3.6.0 PL2
© 2002-2012 Tilted Forum Project

1 2 3 4 5 6 7 8 9 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 26 27 28 29 30 31 32 33 34 35 36 37 38 39 40 41 42 43 44 45 46 47 48 49 50 51 52 53 54 55 56 57 58 59 60 61 62 63 64 65 66 67 68 69 70 71 72 73 74 75 76 77 78 79 80 81 82 83 84 85 86 87 88 89 90 91 92 93 94 95 96 97 98 99 100 101 102 103 104 105 106 107 108 109 110 111 112 113 114 115 116 117 118 119 120 121 122 123 124 125 126 127 128 129 130 131 132 133 134 135 136 137 138 139 140 141 142 143 144 145 146 147 148 149 150 151 152 153 154 155 156 157 158 159 160 161 162 163 164 165 166 167 168 169 170 171 172 173 174 175 176 177 178 179 180 181 182 183 184 185 186 187 188 189 190 191 192 193 194 195 196 197 198 199 200 201 202 203 204 205 206 207 208 209 210 211 212 213 214 215 216 217 218 219 220 221 222 223 224 225 226 227 228 229 230 231 232 233 234 235 236 237 238 239 240 241 242 243 244 245 246 247 248 249 250 251 252 253 254 255 256 257 258 259 260 261 262 263 264 265 266 267 268 269 270 271 272 273 274 275 276 277 278 279 280 281 282 283 284 285 286 287 288 289 290 291 292 293 294 295 296 297 298 299 300 301 302 303 304 305 306 307 308 309 310 311 312 313 314 315 316 317 318 319 320 321 322 323 324 325 326 327 328 329 330 331 332 333 334 335 336 337 338 339 340 341 342 343 344 345 346 347 348 349 350 351 352 353 354 355 356 357 358 359 360