What they don't tell you about chemo: a rant

ruthbru

Go over to the left hand side of the page, find 'Search' & type 'Fertility' in and you will find many posts about fertility (I just checked & there are over 3,000 of them). Also, for scientific information on the topic, go to BCO's home page, and on the top of the page (this is on my lap top, so on another device you might have to look around), there is also a 'Search' box, if you type 'Fertility' in there, it will bring you to many articles on the topic.

They calibrate the chemo dose to your weight so you shouldn't ever be under or overdosed on any infusion.

Jerseygirl927

I just popped in because I always felt I was not getting the complete picture of my possible SE . I went to the class, had lots of questions and thought I was prepared. But I truly was not. I hardly ever put anything into my body that is not suppose to be there, my side effects were mostly almost anything you could think of happened.

I think that if you truly know the right questions to ask, then you get the better answers, or the extended answers that relieve you of the fear. I m a straightforward person also, yes is yes and no is no, gray areas make fear I believe. Reality is reality, yes we can and are trying to make a difference with this cancer disease, and I hope it helps me and others in the future, but the side effects happen and in telling us what they are or could be, I THINK, helps you deal better.

Now that I am done the chemo part, only had 4 total, my quality of life is much better, and I do feel human again. I do hope my chemo brain comes back, as well some of the issues that plagued me.

Feel better all.

ShetlandPony

If you need lotion and drops for dry skin and eyes, don't forget the Replens for dry other places. It can make a big difference.

zjrosenthal

I'm 5 months post chemo and still have neuropathy. No feeling in the,soles of my feet. Does this ever go away? Love, Jean

ruthbru

Are you getting Neulasta shots? If so, then you don't really have to worry very much about getting infections because the shot kicks your white blood cells into production.

Jerseygirl927

unfortunately neuropathy can last forever, try massaging your own feet to stimulate the area but it can change with time.

zjrosenthal

Jersey, I wish I could reach my feet. Blessedly, hubby does them for me. Just hoping they will get better eventually. My chemo nurse said to try vitamin B1. Love, Jean

SelenaWolf

I've ended up with mild neuropathy in my feet which has never really gone away, although - for the most part - it doesn't bother me much. But I've found that - when I get my monthly massages - I ask the RMT to pay particular attention to my feet. I find that, after the massage, the neuropathy seems almost gone and it doesn't come back for a few days afterwards. Just an anecdote, but I do feel a difference.

sas-schatzi

Selena interesting. It would be a very interesting study. Anecdotal observations lead to major breakthroughs

Cheesquake, Not sure where to wade in first. All the info that you didn't get from your doc, should be included. In all of medicine, one of the biggest area's that is neglected is sex. My take on it is it's our puritanical history is to blame. Jokes are made on every sitcom, but when it's a real need to know related to life, to often it goes by the wayside. You can help your MO's office out by printing out the best info you can find and giving it to them. Suggest they take a proactive approach of presenting it either in group or individually. You could do the same with the other material. The best teaching sights are here and Mayo Clinic. Lot's of other teaching sites, but BCO is by far the best and adds topics all the time on the main board. Mayo has info on everything.

I laughed when you said the doc didn't call you back and previously he always did when you had questions. Then he had his nurse call you. Tells me he's uncomfortable with sexuality. Most men are.  

On Dr Google. I'm bothered when folks and docs tell their patients to not seek out info on google. It's the best information tool in history, available any time. I would suggest that a few questions to someone seeking counsel as to whether to use it or not would better benefit them. 1. How much do you want to know? If you read something that might scare you b/c it's outside of your understanding, are you prepared mentally and emotionally for that?  If info doesn't support the management of your care, what would you do?  Etc.

Some folks want to be lead and don't want to learn anymore than what they are told by their docs. I respect that.

Some folks are info junkies. I am. No question it's changed my management. In turn I have presented multiple docs (and nursing management) with info that has changed their practice. Not just for cancer, but other stuff too over 40 years. If I have a doc that can't deal with my learning something that's outside their sphere, I bring 'em along by providing the data or I change docs.

If as a result of my research I find a hole in some process, I figure out the best way to fix it. Local, state or national level. For example, there was a serious lapse in worldwide protocols for post care with RAI 131--(radioactive iodine 131) used for thyroid cancer. The only way to fix it worldwide was go to the top. That was the Nuclear Regulatory Commission (NRC). It's a fun story, but too long. But before I called I was prepared with data. Basically, the USA medical community and the rest of the world follows what the USA NRC medical committee publishes. The committee is revising the protocols this year. Likely will take two years. We all know how long committees need to change things. My timing last year was perfect. 

The initial call had to be too the hotline b/c they're was no non-emergent number. That was funny. The youngin on the other end of the line didn't know what to do. I walked him through it. The fella that was in charge of the eastern seaboard called me back and we had a nice chat for a couple of hours. He joked that his wife wouldn't believe he talked on the phone to anyone for two hours. Why did that happen? I was prepared, non-confrontational, and  knowledgeable about the subject.

An example of local change, I found on google a well established approach for base of the brain surgery. For my brain tumor which was base of the brain, it was a no brainer for me. It wasn't offered to me as a choice at diagnosis. When the tumor grew and had to come out, is when I got to serious googling. No one in my county was doing it. Many admitted they had never heard of it. The Neurosurgeon didn't admit one way or the other. But he didn't offer it at dx. His approach would have been a standard craniotomy. I'm an old OR nurse  and knew that approach for the location of the tumor had great risk. If he knew of it and didn't tell me, shame on him. Google provided the answer. All in contact with my case,  learned something new.

Cheesequake

Sas, thanks for the comment. As it turned out my MO - a woman - was actually on vacation. (Since my diagnosis both my surgeon and MO have now had multiple week vacations... I'm beginning to wonder if I cause them to need it!) A couple days after the initial exchange with the nurse, the MO did actually respond herself. Unfortunately, it was more of the same - chemo brain is real and there isn't anything that can be done about it, but no explanation why I wasn't told of it in the first place.

Every step along this "journey" (I hate that word, even though that's what it is), the idea of advocating for oneself is ever further reinforced.

sas-schatzi

Cheesequake, Yeah somehow that doesn't compute. Sometimes we can't find stuff that helps either. I took the neuropsych test to try and get back to work. Failed. It was required b/c of the presence of a brain tumor. IF I had been in my right mind, I would have waited longer to take the test. Next time I took it, I think 3( 4) years later I passed. If I were to counsel anyone where the test was a requirement, I'd recommend as long as possible after the last chemo and surgery. My mistake was in even telling work about the tumor. It was an incidental finding on an MRI. The MRI was done for a brain concussion on the other side. The tumor never caused any s/s's. I wasn't legally required to tell them. I was naïve. Bad learning experience. 

sas-schatzi

Hmm, anesthesia has a negative impact on the brain too. Sorry. Particularly, evident with multiple administrations. Just as we have with recon. But hey, remember I did pass.

zjrosenthal

To the tune if "I Left My Heart In San Francisco"

I left my mind back in the OR,

High on a pole where they hang IV's..

Where the drugs they give for pain go right up to your brain

And wipe out all your memories!

Love, Jean

Jerseygirl927

I was told that anesthesia is residual and the more you have in you lifetime, the more you need, or side effects. Hubby recently (1) year ago suffered a concussion, he is still in a fog over the whole thing, his last concussion was 41 year ago. I have noticed a dramatic change in him in this year alone, as for chemo brain, they have conducted studies and it is true, but there are some things you can do for it. When I get the website, I will post what I found I would very much like to go into another study if they have one.

Jerseygirl927

Maryann, when you are finished with your Herceptin infusions, I hope to talk to you about an amazing and non-invasive remedy for that pesky brain-fog, also known as "Chemo-brain". You can read about it here. http://www.chemobrainrecovery.com/neurofeedback-im...

This was sent to me by a fellow breast cancer survivor.. Hope the link works.