Cancer Patients

GordonK · Aug 14, 2009

I will have two characters in my WIP suffering from cancer. One is a 40'ish man diagnosed with Glioblastoma multiforme (brain tumor). Surgery performed to remove it reveals the tumor is malignant and inoperable. He will die about 7 months later. The other is a 20 yo girl diagnosed with Acute Promyelocytic Leukemia. She will make a full recovery. The story is set about five years ago in San Francisco, CA. They both have one of the best medical insurance coverage.

What I need to know are:
- Are either UCSF Medical Center or Stanford Univ Medical Center appropriate hospitals to send them to? Are there more appropriate ones (location wise, quality wise, etc?)

FOR THE MAN WITH BRAIN TUMOR:
- Once diagnosed, is it reasonable to have him sent to surgery in a few days?
- What happens to him after the operation? How long afterward can he go home? How long afterward can he go out (eg to watch a baseball game?) Is it possible for him to engage in physical activities (recreational sports) before his time is over?
- Is it reasonable to have him die at home while watching TV? Or will his condition deteriorate to a state he'll spend his last hours in hospital?

FOR THE GIRL WITH LEUKEMIA:
- I plan to have her go through induction chemotherapy, hospitalized for 4 to 5 weeks. Goes home for a month. About 5 cycles of month-long consolidation chemotherapy sessions thereafter. No stem cell transplantation/allogeneic transplant but can throw in ATRA medication. The whole process takes about 12 months.
- How bad will she be when she is in hospital, when her family/friends visit her? Will she behave drastically different due the influence of drugs/chemo?
- I assume her head is shaved during the entire period. Am I right?
- What can she do when she is at home taking breaks from chemo? What kind of special care does she need? Can she hit the books? She has a stern will, but I expect her to need quite some encouragements from family/friends/MC. She lives by herself in a condo, but I think I will get her back to her parents' house during that time.
- I want the MC to give her a pair of puppies during one of the home breaks. Is it advisable/against?

Thanks in advance.

RJK · Aug 15, 2009

The Stanford University Hospital is one of the top ten treatment centers according to this http://www.cancerlinksusa.com/centers.htm

Summonere · Aug 15, 2009

When does the story take place? That would make a difference, I suspect.

I will have two characters in my WIP suffering from cancer. One is a 40'ish man diagnosed with Glioblastoma multiforme (brain tumor). Surgery performed to remove it reveals the tumor is malignant and inoperable. He will die about 7 months later.

Wouldn't they know whether the tumor is operable or inoperable before they cracked his head open? Family member, slightly older than your character, with metastasized cancer, recently had a tumor in her brain. Docs spent a lot of time looking things over and consulting with one another before deciding to go after it using a Gamma Knife, a non-invasive radiological solution. Went in early one morning and she was out of the hospital and home by about three in the afternoon.

As to timelines between discovery of brain tumor and the subsequent treatment in the case mentioned above, it was about a month, as I recall. Tumor was slow growing, a vacation had already been planned, and doctor said sure, go.

Kitty Pryde · Aug 15, 2009

Summonere said:
When does the story take place? That would make a difference, I suspect.

Wouldn't they know whether the tumor is operable or inoperable before they cracked his head open?

Not necessarily. Entirely anecdotal data: my 8th grade stand partner in band flew across the country to have brain surgery, they cracked his head open, had a go at the tumor, found they couldn't get all of it out, and sewed him back up. 12 years on he's still alive and kicking, though he deals with the side effects of the tumor. Anyway, just saying, sometimes the surgeon thinks she can get it out, but it turns out not.

Shakesbear · Aug 15, 2009

Um ... why would she have her head shaved? Many people who have chemo lose their hair as a direct result. Some oncology wards use cold caps to stop hair loss - but they do not always work. The cold cap is, or was, like one of the jackets used to chill wine. The cold slows down the circulation of blood and so can reduce hair loss. It sort of worked for my mother, but she chose to wear a wig. In the UK hospital she was in there was a 'wig lady' who helped her to chose and to fit the wig. All on the NHS!

What she can do at home also depends on the type of chemo and how it is administered. I can only tell you about the treatment my mother had - which was a tube into a main artery inher chest that was there all the time. It was used to administer drugs and she had to have a bum bag to hold the bottle - which was about a half pint size. This did affect her movement and made having a shower very difficult. My mother had no side effects from the chemo - except slight hair loss - though we both witnessed some of the patients being very ill after treatment. There was one poor lady who had the most appalling flatulence - loud, long but not too much odour. She hid under the bed clothes and would not talk to anyone!

I do remember the oncologist telling mum and I that no two people reacted in the same way to chemo - some had really awful side effects and others none at all.

GordonK · Aug 15, 2009

RJK said:
The Stanford University Hospital is one of the top ten treatment centers according to this http://www.cancerlinksusa.com/centers.htm

Thanks. The link is very useful.

Summonere said:
When does the story take place? That would make a difference, I suspect.
As to timelines between discovery of brain tumor and the subsequent treatment in the case mentioned above, it was about a month, as I recall. Tumor was slow growing, a vacation had already been planned, and doctor said sure, go.

The story is set a few years ago, and so the technology should be quite similar to what we have nowadays. The man's sickness is inspired by (and copied from) someone I found on Wikipedia. Another look revealed he had a stroke and it's when the tumor was found. I think this can make a quick surgery more sound. The timeline for vacation is very helpful.

Kitty Pryde said:
Not necessarily. Entirely anecdotal data: my 8th grade stand partner in band flew across the country to have brain surgery, they cracked his head open, had a go at the tumor, found they couldn't get all of it out, and sewed him back up. 12 years on he's still alive and kicking, though he deals with the side effects of the tumor. Anyway, just saying, sometimes the surgeon thinks she can get it out, but it turns out not.

Yeah, this is also possible. After all, I think there are still many diseases that equipment alone can't assess very effectively.

Shakesbear said:
Um ... why would she have her head shaved? Many people who have chemo lose their hair as a direct result. Some oncology wards use cold caps to stop hair loss - but they do not always work. The cold cap is, or was, like one of the jackets used to chill wine. The cold slows down the circulation of blood and so can reduce hair loss. It sort of worked for my mother, but she chose to wear a wig. In the UK hospital she was in there was a 'wig lady' who helped her to chose and to fit the wig. All on the NHS!

What she can do at home also depends on the type of chemo and how it is administered. I can only tell you about the treatment my mother had - which was a tube into a main artery inher chest that was there all the time. It was used to administer drugs and she had to have a bum bag to hold the bottle - which was about a half pint size. This did affect her movement and made having a shower very difficult. My mother had no side effects from the chemo - except slight hair loss - though we both witnessed some of the patients being very ill after treatment. There was one poor lady who had the most appalling flatulence - loud, long but not too much odour. She hid under the bed clothes and would not talk to anyone!

I do remember the oncologist telling mum and I that no two people reacted in the same way to chemo - some had really awful side effects and others none at all.

I never knew about the cold cap. That's very helpful info. Well hair shaving... that's called brain f^^t. I meant hair loss. The clinical experience you presented is also very helpful. Thanks.

dnic · Aug 15, 2009

I'll comment on the girl with leukemia since I'm more familiar with it:

Chemo affects people in entirely different ways. The general side effects seem to be fatigue and nausea though. How she is in the hospital and how she would react to visitors depends on how she's coping with the medication. She would feel lousy, but how much visiting she could stand depends on herself. I personally didn't want to be bothered with visitors because I was pretty much out of it after the first few weeks and it took a lot out of me to focus and concentrate on a conversation.

Hair usually do fall out because of chemotherapy, but when and how long, again, depends on the person as well as the drug. (Quick check shows that APL's treated by daunorubicin, so yes, your character would have hair loss as a side effect.) Whether or not she shaves her head, though, is up to her. I have met a few patients that decided to let their hair fall out naturally.

She'll be at risk for bleeding and clotting problems, so she would probably be pretty closely monitored to make sure that she won't need any transfusions during her time off. Because chemotherapy kills cancerous cells as well as the normal cells, she'll be at risk for infections, bacterias, and viruses (think human petri dish). So she would have to watch the company that she keeps as well as her daily intakes.

The fatigue would probably follow her around for a while and there could be some cognitive issues too (Google chemo brain for more info), but she can absolutely hit the books. It just takes longer for her to process things and more effort. And it's pretty easy to fall prey to frustrations.

As for the puppies, like I'd said, she'll be exceptionally susceptible to infectious diseases, but so long as she doesn't share share food bowls with them and they're kept clean, it should be fine.

But yeah, everyone react to chemotherapy differently. ACS is a good website for additional information. They also have a list of chemo drugs and known side effects.

Hope that helps.

Maryn · Aug 15, 2009

I have direct experience with Acute Promyelocytic Leukemia, which accounts for a mere 5% of all the AMLs. My husband survived it.

GordonK said:
FOR THE GIRL WITH LEUKEMIA:
- I plan to have her go through induction chemotherapy, hospitalized for 4 to 5 weeks. Goes home for a month. About 5 cycles of month-long consolidation chemotherapy sessions thereafter. {Maryn: my husband had only three. Is five now the norm?} No stem cell transplantation/allogeneic transplant but can throw in ATRA medication. The whole process takes about 12 months.
- How bad will she be when she is in hospital, when her family/friends visit her? Will she behave drastically different due the influence of drugs/chemo?

She may occasionally be sick to her stomach immediately following chemo, but her biggest symptom is likely to be feeling tired. Real tired, yet not sleepy. She will not feel 'high' or spacy from the drugs. EDIT TO ADD: Mr. Maryn had some balance problems directly resulting from chemo. Small details to add might include that chemo patients flush the toilet twice, making it clean enough for housekeeping staff (so they're not exposed to the drugs) to deal with.

ETA: Patients in oncology wards or floors for a long stretch get to know their nurses. They're encouraged to personalize their rooms with pillows and blankets from home, their own nightwear, posters or pictures by their kids on the walls, etc. They're unwise to keep cash, iPods, computers, etc. around; theft from a patient away for tests, or soundly sleeping, are not unheard of.

She will also become neutropenic--she'll have no white blood cells, and a simple infection could kill her. Visitors she sees daily, like a spouse or parent, need not be masked if they're healthy, but anybody who feels even a little off needs to wear a mask. She's at risk from poor hospital performance--cleaning staff, meal service, etc.--Damn it, I need to go do something right now (I'm already late starting) but I'll come back tomorrow and answer as completely as I can. Stay tuned! --Maryn, cooking dinner for cancer survivors

EDIT TO ADD: Hmm, where was I? Oh, right, infection. Cleaning staff, the people who bring meal trays, lab techs who draw blood, etc. are supposed to be masked in the neutropenic patient's room--there's a freakin' sign on the door--but many do not. The patient may choose to wear a mask to further protect herself from uncaring idiots. Neutropenia also means you can't have fresh fruits or vegatables, only cooked ones. Mr. Maryn got a real jones for a salad, or a decent apple, which he could not have.

- I assume her head is shaved during the entire period. Am I right?

Nope. The hair falls out all by itself. Mr. Maryn did not ever get completely bald, but actor Evan Handler did--and his didn't grow back. Mr. Maryn's body hair also thinned, even his eyebrows. It's depressing when housekeeping has to go get a special broom to get all the hair drifting around the baseboards. Women tend to get their long hair cut short during chemo; the loss seems less devestating that way.

- What can she do when she is at home taking breaks from chemo?

Almost anything, although her energy levels will be reduced and more quickly depleted. Mr. Maryn read, worked from home, went on exercise-type walks with me (he'd been running before), read to our kids, played computer games, and got online. Depressing as it is to remember, he also put our financial affairs in the best order they'd been in for years, simplifying things in case I had to manage them. He tended to doze off watching TV in the evening--but that wasn't unheard of before he was sick, just more frequent after.

What kind of special care does she need? Can she hit the books?

She certainly could study or read in depth. Mr. Maryn's special care was mainly to keep sterile an implant in his chest allowing for blood draws without needle sticks. They test the blood a lot, naturally. Depite taking faithful care of his implanted catheter, he got an infection and had to be rehospitalized, while the equivalent of Gregory House tried to identify it and treat it with the specific drug rather than the broad-spectrum antibiotics which weren't working very well. He got pretty sick. This was probably the worst period, in terms of how he felt, from the illness the leukemia allowed rather than the leukemia itself. And, since I'm going into details here, once he was home from the long initial hospitalization, our sex life absolutely blossomed despite the catheter in his chesst, right up until he got the infection.

She has a stern will, but I expect her to need quite some encouragements from family/friends/MC. She lives by herself in a condo, but I think I will get her back to her parents' house during that time.

Since her energy will be low, while she could manage on her own, she'd be taking some shortcuts in terms of cooking healthy foods, keeping things clean, laundry, and such. I would think that if Mr. Maryn had been single, he'd have considered moving in with his mom for a while, so someone else would be taking care of such mundane cares.

- I want the MC to give her a pair of puppies during one of the home breaks. Is it advisable/against?

I don't know if a new bacteria source is too big a challenge, but the amount of care puppies require may be beyond her sometimes. However, living with her parents lets this be possible; Mom or Dad could step in as needed.

Be aware that Mr. Maryn was ill in the 90s, so things may have changed substantially since then. His likelihood of this type of leukemia recurring is now statistically lower than yours and mine, BTW. He was among the very lucky few who had no long-term affects to his overall health. Whew!

Maryn, hoping this helped

GeorgeK · Aug 15, 2009

Summonere said:
Wouldn't they know whether the tumor is operable or inoperable before they cracked his head open? .

Short answer maybe, long answer no.
You can sometimes determine that a patient is inoperable based on CT scans etc, however the "operable" side of the equation is always in limbo because of the failings of thechnology. Realistically as of 2005 (specified in the OP) the margin of error was about 2 cm meaning that you might see a 2 cm mass that wasn't there when you opened the patient or you might have missed a 4 cm mass that would have been obvious had you opened the patient.

GordonK · Aug 15, 2009

dnic: Thanks for the info. Very helpful. With the frustration and unwillingness to interact due to tireness, I now have a more realistic approach to handle the twist and turns of the relationships.

Maryn: If your hubby doesn't mind, give him a big hug on my behalf

And of course I'll be tuning in. The reason I planned 5 consolidation chemotherapy sessions is to make the treatment period <= one year. However, 3 sessions seem even better. She would have more time for recovery vs treatment.

GeorgeK: Thanks for the comment. Very useful. I now have a much better picture to have poor dude's head open.

GeorgeK · Aug 16, 2009

Neurofizz would probably know more about a glio in terms of how accurate the scans are, since I'm a retired Urologist. You might PM him. In general the scans depend upon contrast and tangency for things to show up. (In this usage contrast means a sudden change in density or perceived radiologic density which can often be enhanced by the use of special dyes which are also often called "contrast". Tangency refers to how when you see something on various X-Rays, usually what you are really looking at is the edge surface of whatever.) The other addage is that even if you have a textbook appearance of tumor X on a film, that is not definitive until it is confirmed by pathology, which means a biopsy or resection. My Radiology texts on head stuff are too out of date since they pre-date the advent of MRI's.

Deb Kinnard · Aug 16, 2009

On the "inoperable" question -- doesn't operability depend to some extent on the site of the GBM? Some areas in the brain are deeper and less amenable to surgery than others.

Also -- some kids and younger adults shave their heads on purpose when they're facing chemo. I knew a young ALL patient who didn't want to watch her very long, lustrous dark hair fall out in handfuls, so she went the drastic way. It was a shame, too, because she had such lovely hair. Several of her classmates supported her by shaving their heads, and I remember Emily was very touched by it.

Emily's now a 15 year survivor. And has lovely, long dark hair.

Maryn · Aug 16, 2009

Look up, GordonK. I edited to complete my answer.

Maryn

GordonK · Aug 16, 2009

GeorgeK: As long as it is within reasonable clause to have the brain cancer guy's head opened quickly, it will be fine. My plan is for the MC (close friend and career partner to poor fellow) to be on an overseas trip while this happens (to eliminate the need for in-depth descriptions.) Poor fellow's sickness and subsequent death is to bring in a couple of emotional distress that affects the MC.

Deb Kinnard: My best wishes to Emily. That's touching and I like it. I think I will make the girl shave her beautiful hair after her first chemo session. Then I will have her little sis (who has been depicted as an uncaring & materialistic bitch so far) and the MC (self-centered playboy) to have their hair shaved as support. Actions speak louder than sweet talks.

Maryn: You're beyond wonderful. Many, many, thanks for sharing the experience. I now have clear pictures in my head as to what to write. The blossom of sex life is, I guess, typical. I had been hospitalized for Hepatitis A for a couple of weeks. It was awful. I could run, eat (but they gave me tasteless craps), and did everything a healthy person could yet I was confined to a small room. Yeah, you guessed it right, my sex life with wife blossomed the very second I returned home.

BriMaresh · Aug 17, 2009

My sister's fiancee had chemo for leukemia. His hair was coming out in odd clumps and patterns, so he just shaved all his hair off.

His doctor actually recommended that they get a puppy for him (a house dog, he was sure to emphasize, though BREED didn't matter), so that doesn't seem too off-the-wall to me. It's supposed to help with depression, from what the doctor said.

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