Ask the cancer patient(s)

Inspired by Ivylass’s suggestion in her chemo thread.

We have quite a variety of people on the boards who have had cancer, ranging from Ivylass, who’s going through chemo right now to folks that have been cancer-free for years and people who have some rather bleak diagnoses.

Personally, I went through chemo and monoclonal antibody treatments for non-Hodgkins lymphoma (large B-cell, to be precise) about five years ago. If there’s anything you’d like to ask, jump in and ask, and one or more of us will answer.

I’ll start with an answer to an unasked question: I said “cancer patient” in the thread title because I HATED being called a “cancer victim” and when I was going through treatment I didn’t really consider myself a “cancer survivor” because the doc had told me that my treatments had about a 50% success rate so that question was still up in the air.

In case anyone is unaware, I was diagnosed with breast cancer on May 6 of this year. The cancer was successfully removed via two different surgeries, and it has not spread to my lymph nodes. I just had my first chemo treatment on Monday, and after that is done I will have radiation treatment and hormone therapy.

Thanks to **InvisibleWombat **for starting this thread!

**InvisibleWombat **, What lasting side effects do you have from the treatments? I knew someone who lost some sensitivity in his hands because of chemo. Did you experience anything like that?

**ivylass **, I hope you are around in five years for a reprise of this thread. Did you decide to cut your hair before the treatment?

Yes, I did. Here is a link to a picture with my daughter. I used to have shoulder length hair.

A warning…I just got back from the gym and I have no makeup on. I have been told I normally clean up quite nicely. :smiley:

Here is me with longer hair, wearing a shell I knitted ALL BY MYSELF!!!

Hi! *:: waves to **ivylass **and **InvisibleWombat **:: *-- additional Askee here, former patient for Hodgkin’s lymphoma, diagnosed in 1996, treated with chemo for six months followed by radiation for six weeks in 1996-97, now “in full remission” for 11+ years.

I’ve had three definite lasting effects and one maybe.

First definite: I never had a port (basically a surgically implanted manhole, I think usually in your chest, through which chemo drugs are piped). I had the world’s greatest phlebotomy nurse, and she was able to use the veins in my wrists and arms for almost six months of bi-weekly treatments. This was good in many ways – ports take special care and surgery – but it also means that all the veins in my wrists and arms have scar tissue. This means, in turn, that it’s bloody hard to get blood out of me; last time I had to get blood taken for routine tests it took six sticks and three nurses to get any out.

Second definite: Most of my hair and almost all of my eyelashes fell out during chemo. My hair came back like nothing ever happened, but I still have only about half the eyelashes I did before, and they’re shorter. (You never know how much eyelashes contribute to your quality of life until they’re not there, not catching all the crap that ends up in your eyes)

Third definite: the radiation therapy killed my thyroid (because my original tumors were in line with it, and it got zapped). I’ll have to take thyroid replacement pills for the rest of my life. Fortunately, once you get the dosage right, they have no side effects, and they’re dirt cheap.

One maybe: I think my endocrine/hormone balance is off since then… but it could also be because I got older.

I still don’t really think of myself as a “cancer survivor”, although technically I guess I am. (The day after my surgery, in fact, my doctor greeted me with “Congratulations, you’re a cancer survivor.”) Hell, all I did was endure one surgery, although I will have to followup every year (and eventually every two years after some point, I believe). I still feel self-conscious anytime I (or someone else) refers to myself as a cancer survivor,

On the other hand, I did get to answer “I got cancer.” to nosy/annoying people who asked me “Wow, you’ve lost so much weight. How did you do it?”. (It sorta was (at least it was the beginning of it), because the liquid diet, hospital food, and nausea from pain meds contributed greatly.)

Excuse me while I sound like an eight year old: Did you lose your pubic hair? It’s one of those random things that I’ve been curious about for a while, but have never had an appropriate opportunity to ask. This seems like as good of a time as I’ll get.

No! And I never lost any leg or armpit hair either! I’m a regular gorilla! My mom had cancer and successful treatment in the late 60s and she lost most of her body hair, including most of her eyebrows, but she got to keep her eyelashes. It is SO not fair.

As far as I can tell, hair loss is common with chemo and radiation, but where you lose the hair from (and how it grows back, or doesn’t) is a crap shoot.

Hmmm…I’m disappointed with how unsatisfying that answer is. I really wanted some scientific reason why everyone who goes through chemo and radiation loses or doesn’t lose particular body hair.

I’m sorry for your lack of loss, I think.

I appreciate your sympathy. :cool:

Hodgkin’s Disease. Diagnosed in 2004 at the ripe old age of 31. Had a fist size tumor in my chest that nearly killed me by choking off the blood supply from my head. It took three years of chemo, radiation, and two bone marrow transplants to get where I am today. I had my second transplant February 2007 and have been cancer free since.

I’ve taken I think six rounds of chemo, if you count the transplants as one round each. Sometimes I’ve only lost the hair on my head, sometimes I’ve lost everything, head, chest, pubic, underarms, and facial hair. It depends on the person and the type of chemo received.

Thank you InvisibleWombat, for posting this thread - my husband is going through radiation therapy for Non-Hodgkin’s Lymphoma right now, so it’s incredibly timely for me.

Congratulations to the cancer survivors here, may you have many happy years, cancer free…

One question for you - how did you go about informing friends and family, and what was their reaction?

For me it was basically “My doctor called with my test results and I have cancer.” followed by tears and hugs all around, one at a time, to three of my sisters, each of whom were told “You can’t tell Mom, because I’m waiting to tell her until after Mother’s Day.” (I was diagnosed at the end of April.) Then it was pretty much the same with my mother, and then they passed on the info to the rest of my siblings, and then further on to extended family. Hell, there might still be people who don’t know.

I told my husband, he called his family, and I called my dad and step-mom and sister. I made sure to tell them it was small and early, so try not to worry.

The next day at work I told my boss, (I’d been out with follow-up squishings and a biopsy, so she knew it was going on) then the other manager in our department, and then I called the rest of the staff in and told them, urging to women to get squished and the men to urge the women in their lives to get squished. Then I e-mailed co-workers.

Everyone has been very supportive…I’ve been overwhelmed by the depth of the kindness and offers of help, both IRL and online.

I met a lady at a local support group who’s about a month ahead of me on chemo. She mentioned she hasn’t had to shave her legs for awhile. I also got the idea “all” the hair (wink wink nudge nudge) falls out, which should be…interesting.

3 year breast cancer survivor checking in. I lost ALL hair (even THERE) while I was going thru my chemo (adriamyacin, cytoxin and taxol). Also didn’t need to shave my legs. If fact, once I stopped my chemo, I liked the effect so much, I started waxing. Always wanted to BC but was always to scared of the pain. After BC, fear’s got nothing on me!

A friend just gave me this: Cancer on $5 a Day (chemo not included): How Humor Got Me Through the Toughest Journey of My Life.

I have not read it, but he spoke very highly of it. (I don’t have cancer but am recovering from some extensive operations and the thought the humor would help.)

Maybe it will help others here.

I’ll answer on behalf of my husband who is not a Doper (yet.) He was diagnosed with Hodgkin’s Disease in 1988 at the age of 29. After surgery to stage the disease, he took radiation only, but it was a series to his upper body, and a second series to his lower body. He lost all his body hair where they were radiating him which was pretty much from hips to jawline.

We told our children (ages 7 and 9) pretty quickly because we live in a small town and someone was bound to let it slip. Besides, there is that whole honesty thing. It was also an opportunity to see that they got accurate information and emotional support. My family handled it well, but his family was…strange. They didn’t seem that interested in what was happening. Looking back, I think it was a heavy case of denial going on. My husband comes from an alcoholic family so they have had plenty of practice in denial.

Lasting side effects: For several years his skin smelled different. Not bad, just not like he used to. It’s back to normal but it took several years. Also, he does not sweat in his armpits. Those sweat glands are burned and gone forever.

So, 20 years, no recurrences. He still gets yearly follow-up visits, but they switched him to an internist because other stuff is more likely to be a problem now than a recurrence is. Yay (I think.)

InvisibleWombat, he hates the term “cancer victim” too. I vote we outlaw it!

So if he doesn’t sweat under his arms, is he in danger of overheating, or does he just sweat more elsewhere?

I was told the radiation is a one shot deal. If the cancer comes back in Lefty, then it gets cut off completely.

I, uh, hid my chronic cough from my family for three months when I visited them. Eventually I went to the local Promptmed when I was suffering dizzy spells and the coughing had worsen. They gave me a prelimenary diagnosis and sent me to a specialist who had me check into the hospital immediately.

One of the nurses called my parents to tell them I was in the hospital.

Yeah, I didn’t handle that one as good as I could have.

He just sweats more elsewhere. It’s just like when one wears anti-perspirant on their underarms, only his is permanent. I forgot another side effect: thyroid damage from the radiation means taking Synthroid for life.

We were also told that radiation is one-time only (which is somewhat confusing at first because it can take weeks to complete your radiation treatments.) If there were to be a recurrence, the next step would be chemo.

Our friends took the news well, they were very supportive and even held a fundraiser for help with the incidental expenses (travel, meals, deductibles.) I think we wound up with a hospital bill after insurance of $4000-$5000, which took us about 4 years to pay off. The hospital was easy to work with on the bill because they had already been paid close to $100, 000 for their services.