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

Cheesequake

I start chemo next Tuesday. My brain is in overdrive.

I think most people (who haven't ever dealt with chemo) think the worst or only side effects of it are nausea and hair loss. I don't think they even realize it's full-body hair loss. But the worst part is medical professionals sweeping reality under the rug. I sent an email to my medical oncologist:

To date, either in your office, in chemo class, or in the provided documentation, there has been little to no mention of chemo-induced cognitive impairment, the effect of chemo on libido and sexual function, safety for caregivers/partners coming into contact with chemo excreted in bodily fluids, or how to manage any of these issues. Why did I have to read about these on the internet? How are these problems supposed to be managed?

The MO didn't respond - a nurse did (the MO has been good about responding, until now). This is what the nurse said:

"I am glad you are doing so much research into your diagnosis and the possible other affects of the chemo. It is difficult for us to cover everything in the limited time we have in the chemo class. We do try to hit the high points. Chemo has little impact on the care givers of people receiving chemo. To be extra careful you can use one bathroom exclusively far a few days after chemo. There is little evidence to show that cognitive impairment can be prevented, but it usually decreases after treatment. I believe in your chemo packet you will find a side effects sheet about sexuality and chemo. If you would like further information we can put in contact with our social worker."

1. Little impact on the caregivers? If it's in my sweat, saliva, vomit, vaginal fluid, etc, it seems like it would have huge impact on the person closest to me. Various different sites say to wash clothes and dishes separately, wear gloves if coming into contact with bodily fluids, use condoms during sex, avoid open-mouthed kissing, use a separate bathroom (all well and good if you HAVE two bathrooms, which we don't). Why did I have to find all these precautions online, why didn't my provider tell me any of this?!?! On one forum (that I can't find now) a chemo patient said their caregiver even lost some of THEIR hair!

2. As for cognitive impairment not being preventable and "usually decreases after treatment," that is NOT an argument for not telling patients about it in the first place! It would be important to know when deciding whether or not to do chemo, especially if this site is correct that up to 75% of people going through chemo experience chemo-brain, and this person and this person are right about it completely upending their lives, for much longer than a few months after treatment. My MO hasn't once mentioned chemo-brain.

3. There is indeed a sheet in my chemo packet that mentions that "A cancer diagnosis and treatment may change sexual feelings, desire and functioning." That's not at all specific or realistic enough to give anyone an idea of what to REALLY expect. It also mentions to use condoms, if there is risk of infection. Aren't we at higher risk of infection all throughout chemo?!

These are just a few of the side effects I'm worried about, not to mention neuropathy, heart damage from Herceptin, and other less tangible but lifelong changes to my quality of life.

The benefit numbers just aren't high enough to clearly make all these risks worthwhile. There are too many women here who have gone through chemo and still had recurrence or spread. What did chemo do for them?

I'm just scared, frustrated and venting.

Italychick

Cheesequake, I took the precaution of sleeping in a separate bed for three nights after chemo, double bagged my laundry, flushed the toilet twice with the lid down, and also used gloves when cooking, etc. I washed everything I came in contact with during chemo twice. You can only take reasonable precautions.

On the flip side, one of my infusion nurses was pregnant, and there were a couple of pregnant women going through chemo. Everybody I have seen who reported having chemo during pregnancy had normal babies. I know it is all scary, but try not to research too much and scare yourself.

As for sex, it may be prudent to abstain for 4-5 days. The hardest part is worrying about how sensitive your tissue is, and a lot of us have used coconut oil as a vaginal lubricant. I tore my vaginal tissue using a yeast infection applicator, so recognize all that tissue is very sensitive too.

For me, the most critical item to watch for was neuropathy because I developed it after round 5 in fingers and toes and soles of my feet. 30 days post chemo, it has mostly subsided, but still present in my feet. I never got to the point I couldn't walk, but high heels are definitely out for now.

Most side effects subside in 2-6 months. The body is an amazing repair engine, don't scare yourself too bad. And recognize the worst stories are put on the Internet, most women go on in life and are fine.

Big hugs, you can get through this crappy time. Just keep your medical team informed of any side effects as soon as you have them.

ElaineTherese

Everyone experiences chemo differently, but...

1) My DH suffered no ill-effects from chemo.

2) I didn't really have much trouble with chemo brain, and continued to teach at a university all five months.

3) Didn't have much interest in sex during AC; during Taxol/Herceptin/Perjeta, was normal.

Chemo can have lots of side effects, and you will probably get some. But, it's highly unlikely that you'll get ALL of them. Good luck!

Snugxx

hi there....I have just finished chemo and about to start rads. Even tho cancer can reoccur I would go through all the troubles iof chemo again on order to givey body a lesser chance of it recurring.....it's worth it :-)

ruthbru

I didn't do any precautions at all during chemo except washing my hands more often. Both everyone around me and I survived just fine (I worked full time, still had a child still at home etc. etc.). I did not get 'chemo brain'....although I felt overloaded from the whole experience from time to time. I think if you keep as active as possible, that helps keep you mentally sharp through it all. Sex during chemo? Bluck, no way.....I will agree with the gloom and doom-sayers on that one!

If it is something can really reduce your risk of recurence (which it was in my case, and I guess I thought about it the other way......what if I refused chemo and it came back....then I would always blame myself; with the chemo, I had done everything I could & it was in God's (or Fate's) hands); then you just buckle down, do it, and get it over with. At some point you have to turn off the computer and just see what happens; it might be really terrible, but it might not be (most people fall somewhere in the middle). All my best wishes and a hug. It is a scary, scary thing to be embarking on.

Suladog

hey there,

I've done chemo twice , once 25 years ago in my 30s (CMF) and just finished 12 wks of Taxol/ herceptin 2 mos ago. This is just me but , I never did any double bagging, double flushing , or any of that stuff either time, nor was I told to by any of my MOs at either Cedars Sinai in LA or UCSF.

We didn't abstain from sex during either time unless I didn't feel well or was tired, otherwise it was one thing that I really wanted to hold on to as being "normal" . I had some big D issues with the taxol which doesn't exactly contribute to romance, but other than that we had a pretty normal sex life.

I cold capped this time around so I didn't lose my hair, my head hair that is. All the other places however Yep, no hair. It's been two weeks since chemo ended , my eye brows are back, my lashes are coming back.

I never had chemo brain during either chemo , my husband and I are screenwriters and I continued to work during both chemos. I haven't suffered any ill effects on the brain front.

I had no neuropathy issues as I took L Glutamine during chemo at my MOs advice, also Vit D, B6 and biotin.

All of this I know is purely anecdotal, as everyone is different, but that is what happened to me and I've been through this twice. Once young, once....older. Everyone has a different experience, but most of us do just fine. When anybody (a Dr) tells me it's a walk in the park...I always say what kind of parks do you hang out in. It's not easy but it's also not horrible terrible and for a chance of living without Cancer so worth it.

This is a great resource and there are many many helpful experienced women who can help you with almost anything you might encounter, answer questions, and give support. I have to add that doing this 25 yrs ago with no internet, social networking, or sites like this made stuff a lot harder.

Good luck with everything, and remember we're all here for you

Freygea

Gah- I have a 3 pound chihuahua that usually snuggles with me at night. I will not let her next to me right now when I lay down and I feel horrible. Hubby is sleeping in his office with our three dogs. Luckily he has a futon in there.

Hubby is not worried about himself but since our dogs are small we are thinking it is better safe than sorry. I kind of think my hubby is enjoying the lil fur bratzies as he keeps coming out and grabbing "cookies" for himself he says.

Denise-G

I am 3 years out post chemo, but my sister unfortunately is in the midst of chemo for Stage 3 Breast Cancer.  I went with her to the pre-chemo class.  It was as I remembered.  During Adriamycin Cytoxan Chemo - University of Michigan recommends the following for the first 72 hours after infusion.  After that, precautions not necessary but use your best judgment.  No sex, flushing toilet twice with lid down and no one else using that toilet if that is possible, and washing your hands for an extended period of time after using the toilet (I used to sing the Birthday Song twice). 

ksusan

I asked my MO about the "separate bathrooms" and similar. She said that's only needed for certain types of aggressive treatment for some leukemias.

littleblueflowers

Hi cheesequake, my MO hit the highlights of chemo too, and said everyone reacts differently so just call any time day or night with issues. He specifically said no sex for 48 hrs after infusion, but after that the drugs are out of your system. No worries about separate bathrooms or anything. Just be very hygiene concious at all times! You can do this and heal up just fine!

Hi ksusan, we meet in the strangest places...:)

inks

Think about the bathroom in the infusion area..... I used it often during my 4-5 hour treatments and the stupid toilet did not have a lid. How about if you go back for the Neulasta shot the next day and use the bathroom in the waiting area???? Isn't this a little overkill? My daughter was 18 months when I had chemo - how do you not hug, kiss or snuggle your child???

wrenn

Are there any studies (or anecdotes) of any effects chemo has had on people living near the person in treatment? I think they would make more of it if it was truly dangerous but stress depletes immune function so I think some people are better off going in blind and not be given scary information that very likely won't manifest. I find my oncologist is quite willing to answer questions but goes easy on the fear mongering to decrease anxiety.

Italychick

Freygea I'm with you on the dogs. My small dog and grandkids are why I took precautions. I figured better safe than sorry because any effects from chemo exposure to others may not show up for years. Maybe what I did was overkill, but it made me feel better.

Kicks

Different facilities may have different Education Classes. The Education Class(es) I had before neoadjuvant A/C and adjuvant Taxol in fact covered all the issues you present along with a lot more information. My class before neoadjuvant A/C was over an hour long and we went section by section. Just dug out my book to be positive - yes all you wrote about are covered in it. Pertinent subjects are highlighted from when we went through each section. I was given print outs on every drug being used. Did another Education before adjuvant Taxol, it wasn't quite as long but we still went over everything, just not quite as long and was given new print outs for everything.

We each have to make our own decisions as to what we do for TX. There are many of us who have gone through chemo and rads and are thankful to have done what we did to still be 'here'. Unfortunatelly, those who 'claim' that everything was negative for them get more attention when 'Dr Google' searches are done than those who have had positive experiences.!

Bottom line - we are each unique and have to make our own decisions individually.

ksusan

Rose, I'm sorry you lost your hair. My MO did name this as a possibility.

I kept the cats from licking my hands, and didn't kiss my partner in a sticky way in the week after chemo. We didn't share a shower but that was because my partner didn't want me to get sick when my immunity was low, not because we were worried I would contaminate everything.

I think we were handed the ACS chemo brochure by several providers.

Suladog

25 years ago they didn't tell us anything, except suck some hard candy during infusions, don't clean bird cages, cat boxes, pick up dog poop or dig in the garden. Wash your hands frequently and try not to hang out in large crowds so one doesn't get a cold/ flu etc.

It's amazing how people are so much more careful now, I suppose it all worked out since we were young my husband took care of me and we never worried about anything but me getting better. Also no Google went a long way toward keeping the fear factor down. I was so glad I couldn't scare mysel

rozem

this is interesting. I didnt do the chemo class because i was in the chemo chair within 10 days of diagnosis. One of the nurses gave me a crash course during my first infusion. We didnt follow any of the percautions you mentioned only keeping me away from everyone else bc of low WBC. My kids were 9 and 11 at the time and im sure i hugged and kissed them after chemo. Didnt even know it was an issue!

Chemo is nasty however you cut it. The worst part for me was the unrelenting nausea.

4 yrs later I really dont have any lasting SE. The brain fog im experiencing is most likely due to the OS and hormone therapy bc it showed up after. I manage though even in a job that requires some data analysis

If you have a cancer that really benefits than the benefits absolutely outweigh the risks in my opinion

debiann

My MO gives a detailed book about chemo and a nurse goes over it with in a private meeting. My nurse was great, she answered my questions for 2.5 hours!. The one part that sticks out for me is when she was discussing precautions to take during sex. She talked about when to use condoms, then added under her breath "that is if you feel like having sex at all." Lol, well that turned out to be all too true. I didn't have enough energy to get off the couch, sex was the last thing on my mind.

I'm a little over a year pfc, feeling good and for the most part back to normal.

Bippy625

hi cheesequake,

All of this is scary, scary chit. The only thing I ever thought knew about chemo before Bc was that it killed everyone!

Not true of course. I believe it can cure some cancers, my own for sure. I have zero doubt without it I'd be dead anyway. Unfortunately it is the best we have now. Personalized chemo is coming, and immunotherapy.

The best advice I ever got was from my BS. His professional opinion was that "the next year is gonna suck". He was right on too, though it was not all bad.

Many, many women do fine, with minimal SE. Mine were mild, middling and severe at different times. Try not to concentrate on bad things that have not yet happened, because you may not experience them. I took a mild anti anxiety drug thru chemo as needed and it really helped.

Hugs

Anonymous

Ladies, I feel for your worries but chemo was really mostly okay for me. I lost weight, not gained, which was okay too. I never heard using condoms for sex because of chemo excreted in bodily fluids!!! Actually I heard that one 20 years ago when my late hubby was having chemo, but even then his MO told him that the nurse was way overboard warning about that. I would double-check that with your MO, since I had infusions for 5.5 months and yes, hubby and I still felt like having sex. And no one told us to use condoms. Seriously. Because sex was one of the few things that made me feel normal and one thing I could give to my husband who was giving me so much support, along with keeping my normal activity level as much as possible, working, etc.

One thing you might not here is that contrary to what you may feel, regular moderate exercise actually relieves a lot of the side effects (fatigue, nausea, depression) of treatment and there is hard science behind it.

There are natural supplements that you can take to relieve or completely avoid damage to nerves and nails--just use the search function to the left of the discussion board main page. My hair started growing back in while I was into my second month on Taxol, so don't freak out about permanent hair loss as it is fairly rare, although depending on the kind of chemo drug you get (ask your MO, not your nurse) some can be more related to this permanent hair loss than others.

I've written and shared so much about my chemo experiences in the past on these boards. If you search out my posts you can read any or all of them and they may help you a lot.

This is just a temporary thing-chemo-it does end. Know that.

Hugs/Claire in AZ

Penzance

Hi Cheesecake,

This info should be made more widely available, instead of being brushed under the carpet or put down to depression issues etc. I am going to have to move house at some point (hopefully before starting treatment - my accommodation issues are one of the reasons why my physician decided for watchful waiting but it might not have been an option at all). My ever so helpful employers suggested I look for a houseshare as I would get 'help' with cooking food, company etc. I asked them whether I should mention I had cancer when first applying? Talk about denial...

I am frightened of chemo brain most of all. If those drugs have the same effect on my brain as painkillers...

ruthbru

Yes, I will second the 'get some exercise' advice, whatever you feel up to. Some studies suggest that exercise makes chemo more effective, and exercise will, for sure, help manage the side effects during chemo and help you bounce back faster once you are done.

Beachbum1023

Hi Cheesequake, Vent away! As we all find out, BC is a learning experience with a huge learning curve. We are expected to educate ourselves, and be our own advocate as well. I have learned so much in the last 12 months. Thank goodness we can all come here and find out the good, the bad, and the downright ugly. There is so much that we are never told, it's like a sick freaky scavenger hunt for the info. Pick your side-a-f&#ks and figure out from us here how to deal with it all. But I do get the best advice here. I made it through, finished chemo, surgery, and rads and went back to a new job. If you have any questions feel free to PM me. I only deal with the real, so no sugar coating or pink washing. I have neuropathy and heart damage and a basket of other SE, so get your list ready with questions. Ask your infusion nurses as well. They usually have the good info to share. Remember that drinking water and exercise can help so much along the way.

Sorry you are here, but we all help each other, and you are never alone! Take care, I hope your path is smooth, and quick! And we are all frustrated and scared at some point. Very normal given the unknown. Cheryl

justmaximom15

Someone mentioned the toilets in the infusion area not having lids. My understanding of the reason for closing the lid is to prevent the spread of bacteria. My guess is that those bathrooms in the infusion area are cleaned and disinfected often throughout the day.

My Chemo Education went over most everything, not in great detail but being the nerd that I am, I already knew most of what we were discussing.

Our sex life has definately dwindled but that probably began soon after diagnosis. I hate being the one that isn't interested because I know based on personal history how it feels to the other partner. We're still intimate and sometimes that just means falling asleep holding hands. I think I was advised not to have sex for 48 hrs after infusion. I'm lucky because my SO has a great sense of humor and we're able to joke around the situation. If possible, I love him more now than I did before diagnosis.

vlnrph

Couple of thoughts from my experience - no info was provided by clinic on using ice to diminish possible neuropathies but I did it with fingers and was fine.

Cognitive evaluation by psych onc specialists was routine prior to chemo. I asked for a repeat about six months later after returning to work. Actually improved scores, of course I knew how to take the tests and what to anticipate at that point.

I agree with other posters above who suggest exercise and hydration as side effect management techniques.

Keep in mind that what you read on Internet forums tends to be from folks who are having problems. Many people with minor issues will not bother to go online so we never hear from them!

Also, I wonder if the spouse who lost hair had a personal medical reason like thyroid disease, stress, etc. which contributed more to their alopecia than fallout from their partner's cytotoxic drugs..

muska

Hi Cheesequake, I understand that you are anxious and concerned about the upcoming chemo and its risks. However, your nurse gave you a very good answer. Nobody is hiding any info from you. There are dozens of different chemo regimens and each has its own potential side effects - some happen more often than others. Side effects are possible with any drugs - if you read the fine print on tylenol or aspirin you might find out that death can happen. My apology if I sound a little sarcastic, but the truth of the matter is, we don't have better options at the moment unless one wants to take the alternative medicine route or refuse chemo altogether. I think however, that in the latter case there might be more reasons down the road to post about what they don't tell you about alternative medicine.

Now, let me address your specific concerns.

1. Impact on caregivers. I only have experience with chemo drugs that are listed in my profile below. No impact on caregivers whatsoever. Actually, I was fully functional so I am not sure the word caregiver applies in my situation. The only thing recommended is to avoid sex without protection on the day of the infusion. That being said I doubt anybody has much interest in sex right after the infusion. I don't understand the toilet cover argument, maybe somebody can explain? I am a big dog lover but I fail to get it how dogs can suffer if you have chemo?

2. Cognitive impairment. None in my case. Actually, I found that mental focus on something other than cancer helps. I continued working full time through chemo and got promoted while I was still in treatment. I work in high stress corporate environment that requires a good amount of concentration and multi-tasking. I think the 'mental fog' comes from physical side effects like tiredness, anxiety, sleeplessness and the overall 'being under' feeling. I read a very recent study results that did not confirm the so-called chemo brain effect. If you want to find it let me know and I will go through my internet search history.

3. Sexual side effects. Yes, there are side effects. You will be tired and your libido may suffer as a result. If you are pushed into menopause by chemo or have to take anti-hormonal treatment you might experience vaginal dryness. In most cases, OTC lubricant is enough to help with the mechanics.

Generally speaking, if you are concerned about a particular side effect like damage to heart the best thing to do is ask your MO about it. Damage to heart is very rare nowadays and your MO will give you the % of damage to heart side effects that will be more reliable than what you read in patients' rants. Also, I strongly believe that the frequency and severity of side effects depend on your age and overall health a lot. The younger you are the easier it will be.

Good luck with your treatment!

Chi-Kat

I have nothing to add here, as I haven't yet started chemo, but I just want to send a big THANK YOU to all the posters - the timing is perfect as, with chemo on the horizon, I was *just* starting to let myself freak out...and your posts have all helped bring me back to reality. So thank you!!!!

ruthbru

I tried to remember that chemo was not the enemy, cancer was. Chemo was like my own Navy Seals; tough, but working FOR me against the terrorist cells who would kill me, for sure, if they got the chance.

gale1525

At least they told you something I did not even have a chemo class. I learned some stuff from someone who had one. Also from these boards. I even just learned some things right now by reading the above posts. Thanks for posting.

bride

Hi Cheesequake,

I don't think it is possible for any MO to list all possible SEs. Before my chemo started, I was given 2 different meds for nausea. Throughout my 6 months of neo-adjuvant hormonal/chemo I had absolutely no nausea. But I had severe, uncontrollable diarrhea. That, more than anything, removed sex as an option: I was in no mood for it. At one point, I spent a week in the hospital because my sodium crashed. Turned out I'm one of the .0001% of people who are allergic to Taxol.

I did have a 6 week horrible bout of chemo fog. It's after effects weren't bad and about 3 months after my last Herceptin infusion, they lessened even more. The brain fog was the scariest part for me -- I was a college prof for over 30 years and the idea of having cognitive deficits was my greatest fear. But working both my body and brain proved sufficient to counter the fog.

Seven months after finishing treatment my only issues are some PN, especially in my toes; a continued tightness in my pectoral muscle on my MX side; and some dental issues from the radiation. Other than not cleaning the cat litter, I took no special precautions. My caregiver/ DP, my grandkids, and my cats showed no ill effects from my treatment.

While my treatment was pretty bumpy, I'd do again if need be. I know there is no way my MO could have covered every possible SE. I knew my hair would fall out and I assumed that meant all of my hair. Since I've always had dental issues, I figured the rads would add to those issues. I had the most common SEs thoroughly explained to me. I can't fault my MO for not addressing SEs which occur in less than 3% of all patients. Nor do I fault her for not casting me as a toxin. As she pointed out, there have been no incidents of second hand cell death associated with chemo. In fact, she maintained that I was the one with the suppressed immune system and, therefore was at a much higher risk level for additional diseases than anyone who had close contact with me.

Each of us has an unique experience with our journey with cancer. I hope yours encompasses laughter to balance the negatives and that you emerge from it whole and empowered.

bride

newlydx15

Doesn't all this depend on how strong the chemo is as well? Its different for each case, each patient, each individual.

I have not experienced chemo myself, will soon, from others surrounding me, it's all different based on individual and treatment.

Fertility.......can anyone touch on that? I want more children, advice???