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My Doctor said that Oxi was just a nuisance

Annabelle41415's picture
Annabelle41415
Posts: 6179
Joined: Feb 2009

My Chemo doctor just said that the Oxi (chemo drug sorry can't spell it yet) was just a nuisance drug and nothing more. I can't imagine that what I have read on these boards and how people feel while they are on this and the long lasting affects that it can cause a person is just considered a nuisance. She said that it won't be so bad, just don't get around any cold and just wear mittens if you go in the fridge. Wohhhha, I'm just not comfortable with this, but my husband said she is just giving you the facts because you asked. Glad I did ask - or maybe not - yeah I am.

I like her as a doctor, but there are some things I just don't care for her reactions to when I ask her something. Another thing was when I asked her to give me another prescription for Ativan which I have been taking since all this has been going on and I only asked for 30 pills. She said what do you need more for it's not like you are having a procedure done or anything. I just said that with everything that is going on I get so anxious about things and it seems to help me. She just didn't seem like she wanted to give it to me. And what difference does it make that I'm not going in for a scan, if I needed them then why not give it to me. I'm getting ready to go in for surgery - that should be enough right now. I don't take them every day and with all that is going on if it helps me why not.

I just don't feel very comfortable with her attitude but I know she is doing the right approach like all of you said. I guess I want bedside manners and a little compassion with all this grap and I know I'm not getting it from her.

Just wanted to vent and get your opinion.

Kim

Shayenne's picture
Shayenne
Posts: 2370
Joined: Jan 2009

...I am on ativan, and it's only a 0.5 mg dose, (not even 1 mg!) the starting dose, which doesn't do much, I asked if she could up it, and even asked to get something to help me sleep, but she said, if I needed anxiety pills alot, it has more to do with me needing to talk to someone to help with the anxiety, then what pills can do, so basically I think she was telling me I needed to see a shrink and talk about things, and maybe he would be the one to prescribe those type of drugs if I need them, and they don't like prescribing sleeping pills because it's so addicting, and they end up not working anymore, and she was just actually saving my liver from so many pills, she doesn't like people to be on prescription meds for anything but mainly pain. Your doctor may be the same, they are monitored in how many prescriptions they write for something for someone, and I believe I heard they were limited, so they are weary are writing out prescriptions when they shouldn't be. I do like that she is looking after the liver though, too many pills will damage it.

Buzzard's picture
Buzzard
Posts: 3073
Joined: Aug 2008

I'm thinking that you and your insurance are the ones paying her so she is working for you right? Tell her if she can't get me the med's to control anxiety or nausea or constipation or rickets or an ingrown toenail then you'll find another surgeon/ Doctor. Sometimes you just need to be assertive instead of passive. Its your body and your feelings and she is getting paid an astronomical amount to do what she does. Tell her you are going to get a second opinion if she will not cooperate with you...That will do one of 2 things, get you another Dr which isn't out of the question or she will see that your not one to be shoved around....we are talking about your well being not hers.....Make her notice that you mean business and see what that does for your self esteem and her attitude....Its a win/win for you.....then when you finish, talk to God and His Son to know that you did the right thing...I think they will be fine with it.... :-) .......God Bless ya hun.....

PamPam2's picture
PamPam2
Posts: 376
Joined: Jan 2009

Your doctor should give you what you need. I am lucky in that regard, if my nausea meds were not working good enough she kept giving me samples till found one that did. She made a point of asking if I needed antidepressants, which I did not. But the steroid they give you with the first day chemo push made me sleepless, so she gave me ambien for sleep. Some of the doctors have their own ideas or prejudices about medications so you have to fight for yourself, if you need something you need it. I am not saying that a doctor should hand out all kinds of addictive and abused substances right and left, but when a patient is undergoing cancer treatments, if a little anxiety medication or sleeping pill helps then they should have it-and that's that!!
Pam

taraHK
Posts: 1961
Joined: Aug 2003

OK - oxi in NOT just a nuisance! I've done it a lot (I think 12 cycles, then 10, then 5). I try to think of it as a wonderful miracle drug which hopefully will be saving many lives -- and prolonging even more. But, it is pretty nasty! The side effects vary by individual, of course, but can be pretty intense. While I am in chemo, I try to think very positive thoughts about the drugs (my very first chemo nurse used to pause right before the infusion and ask me "Are you ready for the healing to begin?". She was an angel and I loved that). But the truth is they are kinda poisons -- hopefully poisoning the bad stuff and inflicting as little damage as possible on the beautiful healthy parts of our bodies.

Your relationship with your doc is a tough one. We'd all love to have docs who are both supremely experienced/competent and also have wonderful bedside manner/respect/compatible interactive style. Relationships build up over time. I get the sense she may be "trainable" (if you'll pardon the term!). At the end of the day, you need someone you can work with. But we don't all have the luxury to "shop"/move. Good luck with her.

And best wishes to you
Tara

usakat's picture
usakat
Posts: 625
Joined: Jul 2006

Hi Kim,

I'm sorry you had, what sounds like, a rough chat with your onc.

Doctors = There is a part of me that says, hey, let's cut them some slack. They are busy and sometimes can come across as unfeeling and condescending. It can be annoying at the very least, and at most, offensive and a waste of time - time being increasingly important to a cancer patient. But there is also a part of me that says, hey, I'm YOUR customer! I can go elsewhere if I don't like the service I'm getting, so during the time I am paying YOUR fee, I expect you to listen, HEAR my thoughts and concerns, and give careful consideration to what I'm trying to communicate....

Something else is the doctor-patient relationship is not any different than any other, in that the relationships are subject to the same things other relationships are faced with - chemistry, desire, personality, etc... Perhaps you and your onc are not gelling on a relational level.

As for your specific situation, only you can judge the performance and relationship integrity of your own doctors and decide if you might want to make a change. For instance, I changed oncologists three times to find the right "fit". I'm glad I made the effort and took the time, because my new oncologist was instrumental in saving my stomach from being surgically removed when I was diagnosed with abnormal/malignant looking cells.

You might think about contacting your insurance company and ask about having a consultation with a different oncologist. Perhaps your surgeon or primary care doctor can refer someone to you. That's how I found both my oncologists (one general and one gyno-onco). I'm grateful for those referrals. Once you have a consult you can decide if you want to make a change or not.

As for that comment about oxaliplatin being a "nuisance"? That statement is not factual - it's anecdotal and nothing more than her opinion. My opinion is yes, it was a rough drug to live with, but the operative word here, is LIVE! Oxaliplatin has helped many a soul to keep living in this realm (including moi) and it should be valued as the life saving drug that it is currently known to be. People who have never been on chemo cannot relate and we really can't expect them to. It's only until we walk a long mile in someone else's shoes can we truly feel the blisters.

If you do need that Ativan, call your surgeon or primary care docs and ask them to prescribe it for you - they can even call your onc and discuss it if need be. If collectively they think you should not take it, you might get a better and more detailed reason why not. Maybe taking a lead in your care may empower you to get the care and service you want and need from your health care providers. Remember, this is your life, your body, your health - and you know your body and your life better than any doctor ever could. Hop in the driver seat, sister, and race to the finish line of better health and well being.

Many blessings, thoughts and prayers for healing, comfort and restored health...

Katie

CherylHutch's picture
CherylHutch
Posts: 1399
Joined: Apr 2007

Oh Kim.... I'm sorry that, on top of just knowing you have cancer and the journey we all must walk on with it, you also have to experience some questions/anxiety about this one doctor. It's kind of funny (not really), but I've come to the acceptance that I don't expect good bedside manners from surgeons, only skill and expertise. I figure, their job is to cut up my physical body and put it back together so that it heals... their job does not include my overall well being, including how I'm feeling, my sensitivities, my anxiety level, etc. My GP or oncologist, on the other hand... I expect a much bigger picture from them. I want them to know their job and be up on the most up to date techniques/medications, but I also want them to understand that I am going through a journey that has its highs and lows and when I'm on a low, I want to know they are there for me.

Having said that... I would be concerned about her comment about oxi, depending on how she meant it. Oxi is a nuisance drug because it has side affects that other chemo drugs don't have that range from nuisance to downright majorly uncomfortable and I'm sorry you might have to go through them is one thing (and one that I happen to agree with). But Oxi is a nuisance drug that really doesn't have anything to offer cancer patients and I'd just as soon not prescribe it... is bordering on not knowing her job and I would have concerns about continuing with her as my oncologist.

Oxi is a horrible drug from a patient's point of view. Even if you only get a few of the side affects, they are NOT pleasant or fun by any means. And some of the long term side affects are damaging to feet and extremities. BUT hello??? If it saves your life, is there any question about wanting to take it? If you have the chance of a long happy life but with numb toes/heals/possibly finger tips or death, would it take you a long time to decide whether you want to try the drug or not?

I think one of the most important aspects of our journeys with cancer is our relationship with our key doctor on the cancer team... the key leader being the oncologist. He/she will call most of the shots with the patient's approval. Yes, you can disagree with some of what they recommend or feel you just aren't up to it.. but there has to be a leader to the team of many doctors that will come and go. But if that leader says/does something that now makes you feel you don't quite know whether to trust them, then that relationship may be broken and it's time to move on to a new leader.

I would suggest you make an appt. with her, tell her you are having some major concerns and let her know exactly what you are feeling.

1) Her comment about Oxi. Take in documentation which describes why it is considered to be standard protocol for our kind of cancer, along with 5FU, Lecorvin and then Ironocatan(sp?) and Avastin as a second in line treatment. Show her that you are no dummy who just accepts what is told to you, but that you have done your homework on the protocols for cancer and you are questioning her dismissal of oxi.

2) Ask her if a person going through living with cancer is not considered grounds for explaining anxiety/depression, then what, in her opinion would be grounds? Let her know that whether you are going for a scan, surgery, or having to walk out and face the world who all appear to be healthy to you and you feel isolated, is grounds for anxiety, but if she doesn't understand that, then yes, you WOULD like to talk to someone and who does she recommend. You might also mention that you now have anxiety over something you didn't have before... and that's the fear that you might not be comfortable with trusting some of her recommendations/judgements (see #1 and #2).

3) Thank her for the discussion, remind her that every step in this journey is new to you so you are learning as you go and that you are sure she will understand the reasons why you have decided to get a second opinion on both #1 and #2. If a new oncologist agrees that the drug Oxi is a waste of time and should never have been made a standard protocol, and if he/she thinks cancer patients are wimps and have no reason for anxiety/depression, then you will regain your trust with her and will be happy to follow her logic.

Now, let's look at your Ativan useage. How was it prescribed to you? Yes, it's true that the first time it is prescribed, they will usually start you off with a low dosage of .05mg... and prescribe it anywhere from 1 to 3 times/day. If that doesn't work, they will up the dosage to 1mg... etc. until you have the right dosage. It is NOT meant to be a med that is taken once in awhile. The medicine does not work well when taken like a sleeping pill (although, I have to admit, it works great when one can't get to sleep). But for anxiety... you need to take it as prescribed and within anywhere from a couple of days to a couple of weeks it will work on the anxiety level and one day you will realize you don't have the anxiety you had where you couldn't function... or were constantly breaking into tears for no reason. And that feeling of panic that would well up in your chest will be gone.

Now, if you are taking it to get to sleep at night... then I can see where your Doctor may be concerned since it shouldn't be used solely as a sleeping aid. But if you are using it for anxiety and using it as prescribed... and she's withholding the prescription... then again, I'd question her practices as a doctor. :/

Hugggggggs,

Cheryl

snommintj's picture
snommintj
Posts: 602
Joined: Mar 2009

Oxaliplatin is most definitely a pain in the a$$. It fried my liver, gave me neuropathy, and generally made me feel bad. But I took folfiri with avastin and had no response, same with 5FU, leucovorin and avastin. My disease progressed with every treatment except folfox. It didn't just slow the progression it actually reversed it. So, for me, the results outweigh the nuisance.

As for obtaining other drugs, without knowing your situation, I kind of side with doctors that limit medications. I only say this because our bodies need to be at their absolute best to beat this disease. We can't possibly be at our best if our system is diminished by superfluous medications. Now that doesn't mean you shouldn't have access if you need it. Needing it is the grey area here. I think doctors are the ones that should interpret that area. I think we're too quick to medicate ourselves without seeking true remedies. Any doctor that promotes fixing the problem before medicating is one worth keeping.

Annabelle41415's picture
Annabelle41415
Posts: 6179
Joined: Feb 2009

Cheryl ty for the great response on my doctor. I know what you mean about bedside manner and I think that she is just very professional.

The Ativan I had been taking for years, but only twice a year and it was only before a flight and it did calm me down so I never really took it a lot. But since I found out I have cancer it just seems that sometimes I get short of breath and feels like I want to jump out of my skin. I started taking .05 every couple days and that brought my anxiety level down, but I had gone through the 15 pills I was prescribed a year ago just for flying. She did give me a new prescription but she just thought I shouldn't be stressed out because I wasn't having anything stressful coming up soon (hello we just talking about my upcoming surgery on the 26th of this month). That is stressful for me but like I said, my husband just thinks she is a professional type of doctor.

On the oxi note, I guess that her comment just rubbed me the wrong way. I got along extremely well with my radiation oncologist and just wished she was more like him. I go in for a scope on Friday and my radiation oncologist wants me to call him and I might ask him what he thinks about my other doctor. I asked him for a suggestion for a second opinion surgeon and he gave me the one I'm going with, so I will ask him if I should keep the one I have - I trust his opinion and he knows her.

I really don't have a team leader as I know of and if I did, I wouldn't know who it is.

Kim

Shayenne's picture
Shayenne
Posts: 2370
Joined: Jan 2009

... would Oxi be better then the FOLFIRI my doctor has me on? how do they know or determine which one to use? I wonder if I should switch if FolFox is better to beat this??

CherylHutch's picture
CherylHutch
Posts: 1399
Joined: Apr 2007

Hey Donna... now you are asking us questions we aren't qualified to answer :) And I doubt anyone here would tell you to change based on our discussions.

What you need to do when you next go in for your treatment... ask why you are on Folfiri and not Folfox? I'm sure there is a very good reason... and your oncologist who prescribed your treatment would be able to answer that better than any of us.

I can't remember your exact plan, but am I not correct in thinking that you are getting chemo right now to shrink a tumour and if it shrinks, then you will have surgery? In the back of my mind, (and do NOT quote me on this because I have major brainfarts constantly)... I think the Folfox is used AFTER a surgery... and the Folfiri is used BEFORE surgery. But here's where my brainfart comes into play... I can't remember the reason why .

BUT... there is a reason for everything... and if we aren't sure, but a post makes you question something about your own treatment, then that's a good thing... write the question down and take it in next time you meet with your oncologist or the chemo nurses :)

Huggggs,

Cheryl

usakat's picture
usakat
Posts: 625
Joined: Jul 2006

Donna ~

Cheryl is right!!! If you have MEDICAL questions about your case or your treatment it is always best to ask YOUR doctors. Only they have the benefit of your medical history and see you face-to-face.

Cheryl also gave you a good tip - keep a notebook that you can write your questions in and then take that notebook with you when you see your doctors - you can then write notes.

I actually have two three ring binders that I keep all of my medical records in - I keep all test results, notes, information, etc. in those binders. I scanned them onto a disc, so when I see a new doctor, I just give them the disc. I also photocopy of all my of my doctors' business cards onto one page and then give that page to each doctor. This way, all of my doctors have the contact information for everyone in case they need to consult with each other. It streamlines everything and that way I know nothing is missed. I'm my own medical secretary...LOL...

Annabelle41415's picture
Annabelle41415
Posts: 6179
Joined: Feb 2009

Yes and I am having surgery next week and then start another round of chemo with the oxi I believe in May. I have already done the Xeolda with radiation for six weeks and the other round will be for four months. I also believe that one of the chemos is used to shrink the tumor or cut off blood supply to the tumor to make it smaller so I don't think I will be using that one since my tumor will be gone after surgery. Kim

shmurciakova's picture
shmurciakova
Posts: 910
Joined: Dec 2002

First of all I want to say good luck with the surgery. I was never on Oxi, but it scares me, so I know how you feel and I think it may be more than just a "nuisance", but for some people it doesn't cause major problems. At least you are going into it during the spring/summer. So I guess that is good. As for the Ativan. I loved it for anxiety and never had a problem getting an Rx. I think if I wanted it even now (4 1/2 years out) I could get it from my onc no problem. However, I do have a friend that is more or less an Ativan junkie!
He's always asking me to get another Rx from my onc....for him! He was originally given them for anxiety and he was given a higher dose, maybe 1 or maybe 5? mine were .5. At any rate, this guy just pounds them. He'll take like 10 at once! I don't see how he stays awake, but it helps him cope w/ life?! Anyway, you can become addicted to that stuff. There are even websites for addicts. The class of drugs are called "Benzos".
I know it is not the case with you. Maybe you should explain to your doctor that you are not an addict, you just need to sleep, function, etc.
Best wishes,
Susan H.

Annabelle41415's picture
Annabelle41415
Posts: 6179
Joined: Feb 2009

Thanks for the response on the surgery. I was wondering would I want to go through Oxi during the winter or summer and I was thinking neither, but I think the summer would be better to handle, but then I can't have anything cold to drink and that is going to stink. Who wants a warm drink on a 90 degree day.

As far as the Ativan, I have been taking about .5 mg a day - when I remember. I have a prescription for 1 mg but just cut them in two. I'm just so bad at remembering to take pills. Good thing I'm not on birth control anymore LOL.

My regular doctor would give me a prescription for anything I asked for, I don't have a problem with him, I just figured while I was at the chemo doctor and they asked if I needed any prescripts renewed I might as well. I know that Ativan and Xanax are highly addictive and I've known people that were addicted to prescription drugs, but that was hardly the case in me asking my doctor for a 30 day supply.

Love you pic!

Kim

Mike49's picture
Mike49
Posts: 269
Joined: Nov 2008

I agree Cheryl, I have worked in health care for almost 30 years and I have no respect for the physician who deminishes the way the patient feels. I know they see drug seekers but I have not met one drug seeker in 30 years fighting our battle. My oncologist tells me "If you need something, ask me, we can find something for it". I take Ativan, he gladly prescribes it, I don't take but 1 mg but I can't imagine my road to health without its help, I have had sleepless nights without it. The latest trend in medicine is putting the patient, not the process or the science in the center of the equation. It all needs to to tapered to individual tolerance, side effects, etc. Its not safe to practice otherwise, because you are no longer listening as a provider. You are also right on about the drug companies. They spend Millions having Montel Williams tell us how much they give away, just to pull the wool over our eyes about how much they are charging or bilking from the insurance of Americans who can pay.

I hope we all find providers who put us and our fight first. Fight on, Good luck to everyone on this journey.

Mike

vinny3's picture
vinny3
Posts: 933
Joined: Jun 2006

Hi Kim,

In reading what you indicate your doctor said it looks like she was trying to minimize the side effects. It does however, have significant side effects, some of which may persist after finishing the chemo. That being said, it is a potent drug and, as long as you are going to do chemo, worth considering. I last had Folfox 2.5 years ago and stopped it after 9 cycles due to the neuropathy. I still have a very minimal numbness in my fingertips, and for some reason in my left ankle but it doesn't interfere with anything and most of the time I don't think about it.

The doctor should realize that when one has the diagnosis of cancer and even when there is no procedure or even after completing treatment things are different. I am a physician and a cancer survivor. Before the cancer it never took more than a minute for me to fall asleep. Since then I can't count on falling asleep right away and sometimes have to take a Xanax or may take it too when I know I need to get up early and want to be sure I fall asleep. You may want to discuss that with your primary doctor who has taken care of you for a longer period of time and is less likely to be concerned about you developing a chemical dependency on the pills.

The main question though is whether or not you trust and feel comfortable with your oncologist. If not, then you should look for another doctor. You can do that by talking to other patients or talking to health professionals like your primary doctor.

Good luck and we will pray for your successful treatment.

Dick

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