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When is it time to switch doctors??

Anonymous user (not verified)

After my 5th treatment of chemo (R-CHOP/O-CHOP), I had a scary incident that ended with me in the ER. I had a very difficult time with chemo and my symptoms would peak about 2 days after treatment. This time, my symptoms took a downward spiral. I felt terrible as usual, facial pain, stomach pain, extreme sensitivity to light, sound etc. However, this time I seemed to have some type of neurological issue. Every time I tried to lay down and sleep off my symptoms, I would startle awake almost immediately, confused, disoriented and gasping for air. This happened over and over again in a period of an hour or so. When I got up, I experienced an intense feeling of fatigue, and I mean intense, but I couldn't lay down and sleep because of the odd episodes of disorientation when trying to sleep. About 5 to 10 minutes after I got out of bed and experienced the intense fatigue, I began to vomit uncontrollably.Needless to say, I ended up in the ER and was admitted for 2 days. They simply chalked up my symptoms to chemo and sent me home. I don't know what led to the crazy episode, but I do know that feeling like your brain and body aren't working together properly or that your brain is short circuiting, so to speak, is very very frightening.

My oncologist had already told me twice that she thought.I was in remission and because I had such a horrible time with chemo (as in, not sure I will survive the treatments), I made the decision to forego treatment 6. 

Here is the issue (finally!)...when I went in to talk with my oncologist about my decision, she said "I know how you think and I don't have the energy to fight with you"! I laughed it off because that is just her sort of personality. However, the more I thought about it, the more it bothered me. I have never fought with her over anything. The only trouble I caused was not wanting to take the multiple antibiotics etc as preventitive measure. But she never even gave me a hard time about that. 

I am now so uncomfortable even thinking about discussing questions I have, or voicing concerns etc, that I would like to switch doctors. I have been seeing a specialist every so often who works with my oncologist,  and I could begin simply going to him for treatment and appointments, but I feel a bit awkward as he typically only takes on people who.have had relapses.or are doing poorly.

Does  anyone else have thoughts on this? I feel as though I am perhaps just being petty. But after having such a frightening experience, and not even asking me about it or acting as though I'm just scared and not thinking logically through my decisions...well, it just bothers me terribly!

po18guy
Posts: 1009
Joined: Nov 2011

If you are not comfortable, then seek another hematologist. In addition to the normal chemo side-effects, your post-chemo reactions could also have been a panic/anxiety attack, as the symptoms seem consistent with one. Have anti-anxiety meds been suggested? You may also have a sensitivity to one of the drugs in CHOP. As to reactions, Rituxan normally produces an allergic-type reaction as it is being infused. The others have the usual chemo side effects, which are cumulative. As to your doctor, I suspect that you may argue a bit more than you think, what with refusing the antibiotics and her saying she didn't have the energy to argue with you. Just saying. Infection is the greatest threat when receiving chemo, and it can kill you 10-20X faster than the cancer can. As to being in full response, how was this determined?

Anonymous user (not verified)

Thank you for the input. I have had an anxiety attack before (2× in my life and before cancer), and have known what it was and handled it at home without problems. You are right about the effects being cumulative! And that is how the episode felt...like all of my symptoms went crazy. My mom, who also had lymphoma and went through 6 cycles of rchop, even told me she didn't think I should have the 6th cycle and she is a huge supporter of doing exactly what your doctor says. 

I was given anti-anxiety meds before treatment to be used for either nausea or anxiety. I took them once for nausea and they made me feel awful...sort of drugged out and floating...and still nauseous.

It was determined that I had a sensitivity to the vincristine and apparently that drug was what caused the extreme facial pain. 

As for the situation with my doctor, I actually never refused to take the antibiotics. I intended on taking them several times but was so ill and have had so many bad reactions to meds that I was afraid to compound my symptoms furthur. I am actually non-confrontational to a fault as I hate arguing. She and I have very different personalities and I think we clash without ever having had an argument, if that makes sense?! 

Being in full response, well, after my 3rd and 4th treatment, she was not able to feel my lymph nodes (most were easily palpable and close to the surface) and stated she believed I was in remission. The PETscan confirmed this after my 5th treatment. 

I did have a conversation with the specialist about the situation, as, of course, he wondered why I would want to switch to his practice for care. He knows my oncologist and believes she just ticked me off because she has a bit of a temper that can flare rather quickly, and really had my best interest at heart (which I agree with, but doesn't make me any more comfortable with her, unfortunately).

po18guy
Posts: 1009
Joined: Nov 2011

I would much rather have a jerk of a doctor who will place me in remission than a friendly but less competent doctor who would gladly cancel appointments to attend my funeral. In some cases, we simply have to suck it up and carry on. You are not there to make a friend - but to rid your body of cancer. If you try, you will find a way to have an amicable relationship - it involves compromise or "suppression of self."  You should (and must) still ask the important questions - just be more than reasonable, as you are speaking with a doctor, not a magician.

lindary's picture
lindary
Posts: 658
Joined: Mar 2015

Not a cancer story but when my mom moved out of the city to a senior community she had to find a new Dr. the first one she went to she liked because he was so friendly and understanding. Fast forward 3 years. She was having health problems and he prescribe a new meds for her. She took them for a while but complained about feeling light-headed. When she called teh Dr he told her to stop taking them. He made no attempt to get her to stay on the med. This happened several times. The one that worried us is when he put her on comundin. Same thing. She was light headed after a few weeks and he told her to stop taking it. I had always heard that stopping that drug had to be gradual. It wasn't until she went into the hospital for another reason that we realized he wasn't really helping her. Unfortunately there wasn't enough time to find a "jerk Dr" who would have rally listened to her and help her. 

During my treatments and SCT prep I ran into a few medical people who were not very friendly and was focused more on the medicine and how I was feeling. I also found that they were among the best in their field. I was glad to have them on my team. 

Evarista
Posts: 266
Joined: May 2017

The chemo regimens are generally quite "formulaic" and most doctors will be following the NCI guidelines.  It sounds as though your doc is doing that.  Your post-chemo symptoms may well have been caused by prednisone withdrawal, which some people experience more severely than others.  Agree that skipping the antibiotics was an odd decision, given the intended effects of the chemo.  I am suprised that your doc would agree to continue to treat you with that refusal in place and not surprised that she might consider you argumentative in light of that.  That said, glad that you made it through OK.

Anonymous user (not verified)

Thank you for your thoughts. My oncologist definitely was following the guidelines, although she did have to reduce the amount by 20% as after the 1st treatment my white count dropped dangerously low.

I never thought of the symptoms as possibly being caused by prednisone withdrawal.  That's a good point, perhaps they were. 

As for the antibiotics, I didn't ever refuse to take them. I actually intended to take them. I was so ill and weak with the chemo, however, I was afraid to make my symptoms worse. I have had so many crazy reactions to medicine and am also allergic to several ingredients that are in most pills. The other times, I was so ill, I didn't even remember I had pills to take, let alone remember that if I got an infection it could kill me! So there wasn't a "refusal in place", and my doctor never mentioned refusing to treat me either. She and I have very different personalities. I believe I drive her crazy even though we've never argued or debated anything! 

 

yesyes2
Posts: 590
Joined: Jul 2009

Hello Willowmarie,

I may disagree with my fellow Lymphoma survivors because of my personel experiences.  First, why were you even being offered antibiotics?  Did you have an infection and if not why be giving drugs.  When I was receiving r-chop this is something not offered, even when after my last chemo I spiked a fever.  I see nothing wrong with disagreeing and not doing what your doctor may advise.  You know your body and what it can handle.  I have never had a doctor refuse me as a patient because I disagree with them.  When I was getting r-chop I refused to take the 100 mg of preds.  I was given 70 instead.  Not one doctor could tell me why the dosage was the same for a 100 lb women and a 200 lb man.

You could have very easily hasda PTSD event.  Or you could have been having a drug induced migraine headache episode.  You can have migraine headaches without the headaches.  I have experienced these and they are beyond awful.  My neurologist explained that what I was experiencing were indeed migraines without the headaches.  I felt like I was being pushed by someone and than seeing the world like a Picaso painting.  I felt fear, disorination, rapid heart which would last about 5 minutes and than go away.  Never knew when they would occur.  Sometimes they would turn into traditional migraines but in the beginning just the visual and body problems.

If it were me and I did not feel comfortable with my Oncologist, or any doctor, I would find a new one.  Sorry but it is not a patients job to humor their doctor or put up with a doctor who has a bad temper.  My doctors have told me that I am a challenge, both physically and in dealing with me.  And some have thanked me for making them a better practitioner.  If saying no to a procedure, drug or planof treatment gets your doctor angry than in my opinion they shouldn't be in practice.  Regardless of my confrontational style at times I have always stayed professional, repectful, and kind.  I'm sure you are doing the same.  

Let us know your decission.  I wish you the best.

Leslie

Anonymous user (not verified)

Leslie,

I can't tell you how much I appreciate your response. You couldn't have described the episode I had any better...it was exactly like a Picasso painting! Though my symptoms persisted well over an hour and then turned into uncontrollable vomiting.

Your response brought tears to my eyes...someone understands me! I, as well, feel like I should be able to talk to my doctors about everything...the why, the how etc and even question whether or not I feel their reccommendation for treatment is the best thing for me. Funny thing is, I rarely speak up about that kind of thing...that was what was so frustrating about her response. She did try to say some positive things after that and gave me a hug, but it didn't change the fact that she had let it slip that she really believed she knows my mind and hers is superior (or at least, that's how it felt...). I do not pretend to know more than a doctor, but I do know my body, and I believe doctors often miss one of the most important parts of being a doctor....listening to the patient!

The specialist I have seen, and his nurse and nurse practioner have never made me feel inferior. I do find him a bit intimidating, and he makes me a little nervous, but that is just his demeanor...I simply write down all my questions, ask away and he answers with a wealth of info. He didn't seem to think I needed to start seeing him instead, but his nurse practioner sort of spoke up for me and said that if I did decide to switch that I was welcome, even though they typically take more severe cases. 

I am supposed to meet with my oncologist this week and then have my 2nd maintenance treatment. I plan to re-evaluate after that. Thanks again!

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3313
Joined: May 2012

I read all of your posts and responses as of Sunday evening, 7-9-17, around 7:30 PM, before arriving at my view of your situation, Willowmarie.  It was your post of 5:34 PM that confirmed me in my view, which nonetheless reamins subjective, having never met you or any of your doctors.

I can find nothing that your lead oncologist has done that most people would ever find objectionable, certainly no reason to fire one. When you just wrote that you find the OTHER doctor "a bit intimidating, and he makes me a little nervous...." that sealed my opinion.   Conjoined with the lead doctor's  spontaneous comment about "not wanting to fight you any further" makes me believe your interaction with her was actually less ideallic than you recall or describe. 

Seeing a specialist like an oncologiist is usually a fast in-and-out. Yes, a few have more "bedside manner," but among the many of them whom I have met or had as doctors, that was the exception, not ther rule. I have also taken a friend to see many oncologists. Most of them had him meet an N.P, and did not see his doctors at all most of the time.

It appears to me that much of what you have described was derived from some form of anxiety that you have had generally, not just as a result of cancer, although cancer rachets up any person's anxieties regardless.

Most chemo regimines are designed from massive clinical studies to determine how many cycles/doses of the drug are needed to optimally not just "cure" the cancer on the next PET, but to keep it gone. That is, they give more to better ensure that rersidual cancer cells that do not show on a PET are also dead, so that they cannot regroup and cause relapse a year or more later.  I would never allow my doctor to reduce my treatment plan without compelling medical need.

Chemo is notorious for many dozens of serious, sometimes severe or even life-threatening results. Yours seemed to tend more toward the emotional, but as Po wrote, you are there to eliminate a murderer --cancer -- not to have enjoyable exchanges.

My take....

max

Anonymous user (not verified)

Ouch...point taken

Anonymous user (not verified)

Perhaps I should clarify...I am not looking for a magician, someone who makes me feel good, or who will go along with what I want. I want a doctor who will talk to me and not just write me off...if he/she thinks I am crazy or am making a bad decision, tell me and tell me why!! I am fine with a less than stellar bedside manner. I find your reply harsh, but I appreciate it because you took the time to tell me your opinion and why. It's rough to take sometimes, but that's what I want...differing views and opinions before I make a decision. I can be emotional (I am 38 and female, go figure), but I try very hard not to make emotional decisions. In fact, this incident/conversation with my oncologist happened back in April and I have seen her since then. I do have to say that I disagree with using the term "firing" my doctor, so to speak. I don't think you should place loyalty to a healthcare provider above finding the best possible care. That is what I am trying to do...find the best care that I can.

yesyes2
Posts: 590
Joined: Jul 2009

Willowmarie,

Sounds to me like you have a plan, and that's the most important thing.  If your comfortable about doing so let your oncologist know how yur feeling.  If not comfortable face to face, writing a letter also works.  Perhaps all this might be easily worked out after an honest discussion.  I have in the past made appointments just to discuss a clearing of the air.  Seem to do this with my promary a lot.  Good luck.  Your post made me feel good, it's always nice to be appreciated, thanks.  Oh, BTW, nausea and vomiting are pretty traditional with migraines.

Leslie

 

 

po18guy
Posts: 1009
Joined: Nov 2011

For this reason, anti-biotic/fungal/viral agents are commonly given. Doctors see the stats. They know the percentage who expire to sepsis long before the cancer could ever have gotten them. It is both prudent and commendable to avoid that. I have been on various prophylaxis drugs for over two years now. With a compromised immune system, that is life. I try not to argue with it, preferring to live it. 

Evarista
Posts: 266
Joined: May 2017

Excellent call, YY2!  I had completely forgotten that I had of these regularly in the days following chemo.  But I've had them before & had seen a doctor about them many years ago, so I knew what they were and was not freaked out. But they must have been very scary for you, Willow, if you'd never had them before. If you google the phase "scintillating scotoma" you will find lots of art depicting what people "see"...Picasso painting is exactly right. Combined with (possibly) prednisone withdrawal, it's no wonder you felt as bad as you did. 

Note that 20% reduction of chemo dose when either WBC or platelets fall below a certain level is a standard part of the NCI protocol.  Dosage may be reduced again or raised up in subsequent rounds depending on those lab values.  I was dose-adjusted down for rounds 2, 3, & 4, then back to 100% for 5 & 6. 

Anonymous user (not verified)

I re-read the way I wrote about the 20% reduction...I didn't mean to suggest that wasn't part of following guidelines...I was actually thrilled she reduced the amount...it helped with the severity of side effects for sure! Thanks for the advice. I will definitely google those two things. 

Anonymous user (not verified)

Perhaps I spoke too soon...I guess my relating to a Picasso was premature, as my vision was not affected. I felt as though things were disjointed...as if my brain was short circuiting...as if my brain was sending confusing messages to my body and the two were working against each other. It was frightning, but I I stayed calm and tried to avoid the ER, but did go as the vomiting wouldn't stop. 

I also looked up steroid withdrawal...I am not certain, but from what I read, it seems as though you have to be on them continually for a period of time before withdrawal is a possibility. I only took them for five days every three weeks...so not sure if it could be withdrawal. Oh well...whatever it was, I'm so glad it is over and that I only had to stay in the hospital for two days!

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