I couldn't make this up if I tried

KsGal · 08-22-2012, 01:00 AM

So I had a doctors appointment this morning. When I went in, he asked me about any symptoms I had been having, I told him about the pain I had been having in my muscles and joints that is so bad it keeps me from sleeping, etc. I also mentioned that I belonged to a website of all HER2 patients, and on the site they suggested to me that it might be the preservative in the Herceptin, and I would like to try it without the preservative in it.
He then proceeded to tell me there was no preservative in the Herceptin. When I insisted, he called over to the chemotherapy area to try to verify it. When he got the person on the phone, he told them some "people have been telling her some crap on the internet". After a few minutes on the phone, he got off and told me that the preservative was premixed in the Herceptin, and it was alcohol and wouldn't hurt me any more than taking a shot of whiskey. He said that could not possibly be what was causing me to hurt, and said I had chemotherapy induced fibromyalgia, and I needed to do YOGA.
Sooooo...feeling rather frustrated, I, of course, came home and did some research, and find that the benzyl alcohol is, indeed, in the bag shipped with the Herceptin that is mixed at the time it is given to a patient, and if the patient has a sensitivity to benzyl alcohol the herceptin may be mixed with sterile water.
Also, I asked if I might have a brain scan. After what happened with NEDenise, I wanted to take her advice and get it done sooner rather than later. He told me I could have one when/if I displayed neurologic symptoms.
Although this man is very well known and supposedly brilliant and the president of the cancer center, yadda yadda, I know after this I need to switch doctors. Im truly offended that my suggestions were not taken seriously. My question is, do I need the doctor to tell the person who mixes my Herceptin to mix it without the benzyl alcohol, or can I just request it myself when I go for my next round of Herceptin? I won't see a doctor again before my next round.

Ellie F · 08-22-2012, 03:03 AM

Really understand your frustration! When I was early stage I had herceptin at home. The nurse came with the vial of herceptin, mixed if with sterile water and then put in in a bag of saline solution for infusion. Great,no probs! Then I had to start getting it at the onc centre. There it's mixed in pharmacy with preservative added so it's good for the next patient. So sometimes if I have first dose I'm great if not have terrible joint pain and depression for about a week!
I am trying to go the same route as you but getting nowhere. The excuse is that it's pot luck which one you get depending on the day!
If you can change anything for the better for yourself forge ahead!
Best wishes
Ellie (England )

Lien · 08-22-2012, 05:34 AM

What a jerk! Ofcourse there's a lot of crap going around the internet, but that doesn't mean that everything we get from the internet is crap. And he could at least investigate, couldn't he?

Anyway, I'm allergic to benzyl alcohol. Perhaps you could get that confirmed by doing a simple allergy test. If that is positive, you have proof that you shouldn't be getting it in your IV's. The test involves getting a small scratch on your skin, usually on your back, adding a tiny bit of the offensive substance and waiting for 48 hours to see if a reaction shows up.

If you notice improvement with your next Herceptin infusion, you have double proof. However, not all reactions show up on an allergy test so you might face more problems if that happens. Just leaving the benzyl alcohol out of the mix would be the best way of testing for sensitivity.

Are the symptoms worse at first and do they subside after a while? Could there be other sources of benzyl alcohol, eg. in dental fillings, cosmetics etc that might increase your problems? That would be worth looking into as well.
Hugs

Jacqueline

michka · 08-22-2012, 05:49 AM

I can imagine how you feel. That happened to me. I changed onc.
I don't know about preservatives in herceptin but my opinion is that as a stage 4 you should have a brain MRI.
Can you find another onc? Does someone on this forum live in your area? Stay strong. Michka

Sheila · 08-22-2012, 06:48 AM

First of all you deserve to be treated with respect, and not blown off......I would go to the nurse or pharmacy and ask that the powdered Herceptin be reconstituted with bacteria static water then placed in a bag of IV solution with NO alcohol....also, see what is in the flushes they give you in your port like heparin and the flush of nacl or whatever they are using as these too can contain alcohol.....they contain something because I can taste it when they inject it. As far as the MRI....some insurances fight paying as they are expensive, which in turn makes Drs reluctant to order.......so do what I do, fake a headache that won't go away with a hint of dizziness or a touch of blurred vision..you will get your MRI...and the insurance will pay...we as women are accused of "faking it" all the time.so we might as well take advantage of it...third, look for a new oncologist,
This guy sounds like a pr_ _ _......and the word ISN'T prince!!!!
Good Luck!!!

NEDenise · 08-22-2012, 07:04 AM

I couldn't agree more with the brilliance that has been expressed so far by our sisters on this thread! As usual, Sheila has summed it up beautifully...and in a colorful manner!

When it comes to navigating all this nonsense...Sheila's on the inside track...she's a nurse...she knows what they need to hear...so we get what we need. Plus...she's one gutsy gal, and can spot a Prince of a Pr_ _ _ at 50 paces!

You keep pushing till you get what you need...feel better...and have your well-deserve peace of mind! You're important to us!!
Denise

hutchibk · 08-22-2012, 09:39 AM

EXACTLY, Sheila. Cuss words and all. Herceptin mixed with water, call Genentech if you have to... YOU ask, screw the current doc, can't wait for you to get that new one! And a brain MRI. Since you are about a year out from dx, insurance should pay... especially if you tell them you have a headache that does not go away w/ pain relief (a key).

Deb33 · 08-22-2012, 04:58 PM

My end of treatment included a PET Scan, Brain MRI and the usual blood work. But the headache is a good idea too.

BonnieR · 08-22-2012, 08:08 PM

Whether on not what you were presenting to him was valid, I am struck by his dismissive and arrogant attitude. He should not have spoken about you that way. But I have heard similar tirades from doctors who are apparently threatened by patients who advocate for themselves and do their own research.
In a different vein("vein" Ha!) when I first had cancer and my anxiety and BP were through the roof, my new GP told me to "Put your worries in a boat and float them down the river". I told him I would rather get some Ativan and also some BP meds! And I got another doctor.
keep the faith

Laurel · 08-22-2012, 08:18 PM

Gosh, may I just say how proud I am to be a member of this loyal, smart, & feisty bunch of amazing survivors! You guys rock! And, Sheila, you absolutely made me laugh out loud! The protracted headache fabrication will definitely earn you an MRI, and heck you deserve to have the peace of mind you need to go forging forward in this game of surviving.

KsGal · 08-23-2012, 02:04 AM

LOL Bonnie! Put your worries in a boat, huh? That's funny. I felt about like that when my doctor told me I needed to do yoga, not that I am downplaying the benefits of yoga, Im just saying. I had just told him my pain was so bad I was about to quit my job. By the way, he told me the economy was so bad and jobs so scarce, I shouldn't quit my job until I found another one (thanks, Dad!).
I just want to say thank you all so much. Without you all listening to me vent and giving me advice, I don't know how I would get through this life with stage IV. Im going to see if I can get switched over to another oncologist in the same group/clinic. In the meantime, Im practicing my "I've got a headache" face.

sarah · 08-23-2012, 07:55 AM

It makes me livid when I hear about cancer patients who can't discuss things with their oncologist! As a member of a local support group I always tell new members, if you can't talk to your onc, get another one or at least another opinion. At our hospital we have an onc/radiologist who's like that and the nurses and other doctors say how great he is so I say go to him for radiology but get an onc you can talk to, same goes for a GP. Sheila, love your idea. Luckily here in France so far we can just ask for it - they know it's an area of concern for HER2 patients.
I'd also suggest you take a patient advocate with you who can ask the doctor (nicely!!!) to do more and do his job which is get your better and make sure you feel confident about your treatment.
hugs and love
be strong and tough and fight for your treatment, these ladies and gentlemen on this site know their stuff!
sarah

michka · 08-23-2012, 09:03 AM

"also, see what is in the flushes they give you in your port like heparin and the flush of nacl or whatever they are using as these too can contain alcohol.....they contain something because I can taste it when they inject it"

Sheila, thank you for reporting this. I have a bad taste in my mouth as soon as they flush the port. They always told me it was not possible because it is only NACL and it was just in my head. They told me to think of something else. Of course I knew it was not just in my head but I thought maybe it was the plastic I tasted and I was miserable. Now I know where it could come from AND that I am not the only one who gets that taste right away.

Ellie F · 08-23-2012, 09:49 AM

Michka
You are certainly right about the taste. When I had an infection in my central line it was locked after flushing with pure alcohol. The taste was so strong in my mouth and throat you would think somebody had poured a straight gin down! After herceptin the taste is not as strong until I cough,then you can really taste it.
Ellie

suzan w · 08-23-2012, 07:33 PM

I dont
't have anything to add...I just wanted to say that I have thoroughly enjoyed reading this thread. And if we can get any enjoyment at all out of cancer...then I say...go for it!!! Everything written just proves how witty, smart and resourceful we are. I feel priviliged to be part of this group!!!

Mtngrl · 08-24-2012, 09:14 AM

I, too, have nothing to add except gratitude for our wonderful "club."

Not all doctors are arrogant pr***s but some definitely are. Let us know how you do with telling the hospital pharmacy not to put benzyl alcohol in your Herceptin. It makes me wonder what our procedure is. I know they don't order my Herceptin until they're sure I'm on site.

Keep it up!

rhondalea · 08-24-2012, 11:59 AM

I'm with you on the obnoxious onc, although at least I have the benefit of a good RO who is willing to compensate somewhat for his colleague's deficiencies.

I received my MRI results 15 minutes ago. Nothing growing, thankfully, but I'm not sure I trust the results--nowhere in the report does it say, "Brain is oatmeal," but there's absolutely no doubt that my brain is currently the consistency of porridge. You'd think they'd have picked that up.

To get the MRI, I didn't have to ask. I just had to mention the headache (which I really do have), the transient nausea and a general sense of not being entirely present in my body. I made it clear that a) I had talked to a doctor at Sloan-Kettering about the sorry state of my consciousness and comprehension, b) that I planned to get help for it, and c) that I wasn't asking for her input or assistance. She seemed to take that as a challenge, which is how I ended up lying in a tube listening to bad music (the purpose of which was apparently to mask the excessive noise that has undoutedly damaged my already fragile hearing).

So with these deity wannabes, the answer seems to be that they have to come up with the idea themselves. Don't ask for anything, just ramble on about a bunch of symptoms (and possibly what you plan to do about them on your own) and wait while the overweening ego rights itself and figures out how to be back in a place of control.

Mtngrl · 08-24-2012, 12:40 PM

Rhonda--Brilliant! Porridge brain or no, overweening egos are no match for you! Well played, very well played.

Jackie07 · 08-24-2012, 02:18 PM

Since you've had Herceptin for so long (a year?), I agree with your doctor that it's doubtful the preservative was the problem. Have you been given shots to increase your blood counts? I remember how those shots gave me certain symptoms...

We all develop 'communcation problems' with our oncologist at one time or another. Like every relationship in our life, 'retreat' or 'blame the other side' is usually not the best solution.

I'm sure your doctor will respect your opinion/complaint more after this 'incident'. He owes you one - which can be a good 'weapon' for you to get what you need in the future...

Most oncologists are the top in their profession as physicians. They have strong egos. Give him some compliment next time before making your requests/complaints, he might be more likely to listen to you.

My oncologist is a very patient person with top trainings/experiences. But even a 'very' nice person like me had driven him 'crazy' (= got him upset

with my requests a couple of times.

rhondalea · 08-24-2012, 05:51 PM

Sensitivity can develop after the first exposure to a substance and grow worse over time.

This is why the L'Oreal box warns us to do a patch test every single time we cover our roots. It's also why I was able to take Bactrim intermittently until I was in my early 30s, and then--KABOOM!!--I woke up in the middle of the night bright red all over my body and thinking I would likely die of itching. I also have an acquired allergy to tea tree oil that occurred about 2 years after first use.

As for doctors, I must confess to a "what have you done for me lately?" attitude. That may not be the best approach, but I've had some very dismissive doctors in my lifetime. As a result, I was untreated for severe Hashimoto's for years. I was also erroneously diagnosed with MS. (I only avoided treatment for MS because I was so sure I didn't have it, I walked out on the doctor who diagnosed me. The next doctor in line looked at me like I was a loon when I asked for a thyroid panel, but he never apologized for treating me like a nutjob when the results came back.)

I have learned the hard way that we need to trust our instincts about our doctor's care for us, and when we start getting that bad feeling in the pit of our stomach, it's time to move on.

My bias is that my brain hurts, and I'm pretty pissed at the medical profession right now, so except for the factual item in the first paragraph, you might want to take me with a grain of salt.