What questions to ask chemo doc?

[SiBotak]

Hello everyone,

Thank you for your comments regarding chemo. My husband has just been scheduled for an appointment next Tuesday with the urinary oncologist to discuss chemo. As it happens, we’re going to be traveling from tomorrow until the time of the appointment, which doesn’t leave us much time for research. I’m wondering: what are some of the most important questions we should ask the doctor (Dr. Coppin in Victoria)? Oops. I just realized I should post this under a different topic. Please excuse my newbie mistake!

[Greg]

Good morning:
1. What type of chemo am I going to get (MVAC or CG)?
2. What are the side effects?
3. How will you control nausea?
4. What are the effects of chemo on nerves and kidneys?

I have not yet had systemic chemo, but others might better comment who have. Until they do, here is a link that might help:

http://www.cancer.org/cancer/bladdercancer/detailedguide/bladder-cancer-treating-chemotherapy

All the best.

Greg

[SiBotak]

Thank you, Greg! That’s a huge help. The upcoming chemo has me pretty stressed out as I won’t be here when my husband starts it. I’ll let y’all know what regimen he’s getting after our meeting with the oncologist next week.

[KIOWA]

When I had chemo for colon cancer I believe my first questions to were: 1) how much do you charge and 2) will my insurance pay for it. Seriously, that’s what I asked him. He never did answer the first one but fortunately the answer to the second one was yes.

I had lots of other questions for him later though. And fortunately he is the kind of doc who will be honest, up front, straight forward and sincere and caring. Being a chemo doc has to be one of the most difficult professions in the world.

Kiowa

[Greg]

My chemo starts September 16 – Cisplatin and Gemcitabine. I also asked if I should have a PICC line (peripherally inserted central catheter) rather than get stabbed with an IV needle every time. But I have great veins so early on at least I will not get to pick that choice. I have found that it is always helpful for me and for the oncologist to be upfront with them and ask them to be forthright about my disease and its treatment and its outcome. I find it easier to deal with what is known instead of constantly wondering if something is true. Is the chemo curative or is it palliative (palliative does not mean you are going to die imminently, even though most people seem to think that is what it means)? Palliative means the underlying disease (bladder cancer in this case) is not curable (although even incurable cases are sometimes cured so NEVER lose hope), so treatment is given to provide quality of life for as long as life goes on. In many respects, every single human being is taking palliative care since we are all going to die at some point and our treatments (even if those treatments only include vitamins) are all designed to provide a good quality of life for as long as possible.

OK my rant is over – for now!
Greg

[KIOWA]

Greg, Am I understanding you correctly? You said we are all going to die? Great, now you tell me. I wish I had known this before.

I thought a PICC line was a subsidiary of Southern Pacific Railroad. You know, Pacific Inter-mountain Carriage Concierge.

So I lived all my life just to find this out NOW? Wait!. I’m still alive so I couldn’t have lived my life. But I certainly agree with you (much to my dismay) that we are all palliative in a way. It’s not how long we live. It’s how we live. I find that living for others, to improve their lives, helps me live a healthier and happier life.

Ki

[marysue]

I haven’t had to do chemo thankfully, but did do 21 BCG treatments that had cumulative side effects that got pretty tough.

I found talking to others including several on this site really helped me learn what to ask the docs and nurses. Getting a clear understanding of what the drug(s) are supposed to do and the possible side effects you might have to endure to get there is key. For some it is a no brainer; without the treatment they will die, others it may offer a reasonable chance of a cure and still others it may only buy more time. Everyone is different because of age, circumstances etc. For example my mother-in-law was 80 when diagnosed with early stage lung cancer. She was too frail to undergo surgery so that left the options of chemo and/or radiation. Mom said no to that because she felt at 80 she had lived a long life and would rather live what time she had in reasonable shape versus combatting the side effects of drug treatment. the doc did tell us it wouldn’t cure it, only buy her time and not much at that. She did live another 4 years. Me? I was diagnosed with BC at age 50 and felt since I still had dependent children it was in my best interest to fight to beat the disease. Now that being said, if I was told I had to do chemo to this day I don’t know how I’d answer that.

[SiBotak]

Hello all,

Just an update. My husband started chemo 8/16, just after I left town for two weeks. His father was here for the first couple of days, but then my husband was on his own (with the dog, who has Cushing’s disease.) He experienced SEVERE anxiety and spent three days barely able to sleep or eat or do much of anything. Luckily we have a neighbor who helped out and took him to ER. He had a pulse of 130. They took him off dexamethasone, just one of the drugs they’d given him for nausea (it’s a steroid.) They also put him on Ativan, which really helped. He now takes Ativan once in a while, but Ativan is SCARY-addictive. Even the lead oncologist (who is not the guy in charge of Wyatt’s meds.) said, “Watch out! My wife was addicted to that stuff and was taking 9 a day at one point.” So, I guess my question for you folks is: does anyone out there have experience with severe anxiety (and this is different from panic attacks, which he has had in the past. He says this is different and worse)? Has anyone used and successfully gotten off of Ativan? Are you familiar with alternatives to Ativan (including non-pharma remedies)?

We met with Dr. Black yesterday for the first time. REALLY liked him. Surgery is set for Dec. 17th, though I think that will be pushed back as chemo gets pushed back a bit.

Wyatt’s 2nd cycle of chemo starts Sept. 9th, so I’ll talk to you again soon!

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