After just completing radiation and chemo this week my husband is still having such sensitivity to smell, mainly to people's breath. (This started about 3 weeks ago)Even after brushing my teeth and using mouth wash he still finds it almost nauseating. When the doctor was checking his mouth and neck he couldn't wait for her to back off since he finds it so offensive. He says our dogs breath isn't bad!! I wonder if it the spicy things like it salad dressing that linger, he can really detect garlic. Since it takes awhile for people to get back to eating spicy foods I wonder if there is some correlation??
There is a correlation between sense of taste and that of smell so that whatever it is we are smelling, the molecules that are released from what is smelled, get into the air and into the nose. For someone going through the taste changes and the way tastes are sharpened, the odors must be sharpened to a great degree, making them quite offensive. When my son's taste buds started to recover, I noticed that he would spend several minutes putting his head down and smelling everything for several seconds. I asked him about this and wondered if he thought I had prepared something that didn't turn out right. He said that although he could not taste things very well, smelling them gave him some of the same enjoyment he formerly had with being able to taste. There is a student paper (see second paragraph that discusses this correlation at:
http://serendip.brynmawr.edu/exchange/node/1575When I first became aware of what the molecules from certain items (which may not be quite so pleasant) can travel and get to our breathable air, I was a little shocked. And now, I always put the cover down on the toilet.
Fascinating question and observations. I am not sure it is a heightened sense of smell so much as a distorted one though.
Alex is the cook in our family and when he was trying to get back to eating, he would cook whatever appealed to him for me to eat and for him to taste. By the time he was half way through cooking he would have lost his appetite and feel nauseous. We came to the conclusion that ANY cooking smells were either distorted or an overload for Alex. Eating out or using pre-packaged meals solved this problem to some extent.
To our great surprise the smell of eggs made Alex sick. He also complained that I smelt like "trees" (I think he meant the dank, wet, rotting, foresty smell, as I did not get the impression this was a good thing
)
The other thing I remember quite clearly, was Alex's complete reversal of some taste sensations. We went to a Malaysian restaurant and ordered two dishes. One contained chilli. Whilst Alex couldn't eat it so much as taste it(couldn't swallow too well) he said he quite liked the flavour although it was not as expected. The second dish which had no heat in it in my opinion, nearly took his head off!! At first I thought it was chemo brain and he had got the two dishes mixed up. I had to call the waiter over to list the ingredients for each dish and tell Alex which was the spicy one. Even knowing this, Alex still thought the mild dish was the spicy one and the spicy one was ok.
I have a feeling this also started pre-radiation which suggests chemo plays a bigger role in this that we give it credit for.
He is good with tomatoes which seems to be a common fruit that others can't tolerate, can't stomach eggs, can't deal with mashed potato and gravy and seems to be better with sweet rather than savoury. Can taste and actually enjoys a dark beer (sorry,don't know what sort that is), is ok with apple juice but can't deal with orange. Loves the taste of parsley!!! Damn shame parsley has no calories or nutritional value (unless served by the shipload of course).
I also have a super sensitive sense of smell now. I figured it was from the radiation.
All kinds of little annoyances come with fighting cancer. Best wishes with his continued recovery.
HI Christine
Your heightened sense of smell: Do things bother you now that didn't before? Do things smell differently to before, or do things smell that didn't before? Or maybe a combination of all of the above ...
PS for Christine - also, what about giving up smoking. Since giving up, I can smell sweat in the lift now that the lifetime non-smokers don't seem to notice. Also, I can smell smoke at a 100 paces, including on the breath of people when I am talking to them and who haven't smoked in an hour or more. Do you think your heightened sense of smell is partly due to giving up smoking, or something completely different?
I've always had a heightened sense of taste and smell and I never smoked nor had cancer. I can taste when a tomato or salad item has gone bad before it is noticed by others. Lots of people are like that and are called "super tasters". Maybe radiation has a side "benefit" in that it provides for a heightened sense of taste. Re smokers, I don't think they can taste things as well as non-smokers and that's probably why when they quit, they can taste things better which encourages more eating and gaining weight. My ex (a smoker & now deceased) had a big hissy fit once, when he accused me of putting mayonnaise on his pork sandwich that he took to work. And it wasn't even pork, it was turkey! So I know his taste was off probably because of smoking. Karen, I do think quitting smoking gives you a heightened sense of smell A smoker gets used to the smell. It's like when people live close to an evil smelling paper factory or some other evil smelling area. When they live with it, after a while they don't notice it.
There are some very interesting points being made here. Smoking is notorious for deadening the senses of smell and taste. Fortunately, it recovers fairly quickly after quitting.
I have always say "I have a nose like a hound." because I smell things that others do not or perceive them at very small concentrations. Perhaps it is just the way some of us are "wired". But, I also like Karen's point about chemo playing more of a role in the whole taste/smell perception aspect. Our brains are amazing organs that can play tricks on us if there is even the slightest change in physiological balance.
I am reminded that with both of my pregnancies, my first symptoms were hypersensitivity to smell and altered sense of smell. I remember that I couldn't drink out of our water glasses because everything smelled and tasted foul. We used to store the glasses rim-side-down and I could sense the smell/taste of the shelving in a the cabinet. Many things like this happened before I even knew I was pregnant...and believe me when I tell you...we tested as soon as we could when we were trying to have kids!
Also, I couldn't stand the smell of coffee (which I normally love); the smell of shampoo, soap, and deodorant sickened me. I couldn't stand being near my poor husband! I had to get all unscented products. We all know that these changes are due to the flux in brain chemistry/hormonal balance that is occurring rapidly during early pregnancy. So, the changes in brain chemistry from chemo may play more a role than we think. It makes sense to me, anyway.
I think the other changes that occur during/post radiation such as loss of taste, intolerance to certain textures, etc. could be explained, in part, due to the lack of saliva and mucousal damage and all of the other horrible things that radiation does to you.
For all of you who are suffering with these issues, I do hope that they pass with time. Some things may never be the same, but hopefully they will improve/normalize over time.
At least we know that we are not "crazy" or "imagining things". If I smell something that someone else can't smell, I joke that "I must be having an olfactory hallucination!".
Kerri - Maybe it's not an "olfactory hallucination" but "an olfactory revelation" and protection from something that may not be good for us (I had the same newly pregnant issue with coffee in my 20's). Whenever I'm in a restaurant salad bar, and discover something that I know is going bad, it's a struggle for me to quietly tell one of the assistants that a certain item is going bad. Fortunately most of them have food inspectors to make sure everything is fresh and at the right temperature. For those recovering from radiation, perhaps the changes in taste may not always be a bad thing but just a sign that it should be avoided. In addition to certain tastes, during radiation, my son's sense of sound was sharply affected as well as sensitivity to light so we kept everything around him quiet and in very low light.
Hey Terri, this happened to me too !
Interesting topic: There have been many studies on the effect of radiation to smell and taste. The ones I read describe the different type of damage radiation does to the sense of taste that we are all familiar with but conclude that the sense of smell recovers better and quicker. Some note in passing that the sense of smell of radiated patients is often better than control groups of non cancer patients.
My personal experience is that I now can detect faint odors that before I would not have noticed, especially food related ones and personal hygiene.
The studies also note the difficulty in separating the gustatory (taste) and olfactory (smell) systems since they are so intertwined in our bodies.
None really focused on this aspect - or rather none that I found.
Charm
This has been a very interesting thread. While I haven't noticed any change in my sense of smell, my taste buds are really crazy. I have always been a chocolate lover, and that tastes like crap to me now. Some things taste good, and others have really no taste at all. Maybe my sense of smell hasn't changed because I have never been a smoker, but it's disappointing when something really smells good to me, but then, I either can't taste it or it tastes awful.
This topic has long been an issue for my Alex, and has also piqued my "need to know" gene, so I have spent some time poking around the Oncology medical journals and websites for healthcare professionals(I am highly skeptical of other sources). There is an awful lot out there and many theories about the hows and whys of what is going on. I am confident this information is credible BUT there may be inaccuracies as a result of my own misinterpretation of the information (please correct me if you know what I am trying to say but haven't got it right).
Before I share what I have learnt, some definitions:
- hypo - means less of
- a - means lack of
- dys - means disturbance or not normal
- osmia- refers to sense of smell
- geusia - refers to sense of taste
So dysgeusia is disturbance of sense of taste whilst hyposmia means reduction in sense of smell.
The literature struggles to disentangle taste and smell as the pair are interrelated to the point that if one is impaired the other is affected and it is difficult to pinpoint which is impaired to affect the other.
Chemotherapy causes smell and taste disturbances - particularly absent and "wrong" sense of taste and smell. The two culprits relevant to this forum are 5FU and cisplatin. Although I do not recall reading about carboplatin specifically, I would be unsurprised if it too were implicated in some way.
Depending on the trial, 50-80% of patients suffer smell and taste disturbance after chemotherapy. The chemotherapy refers to multiple combinations of chemo agents used as regimen over 9-12 weeks rather than a single agent administered in conjunction with radiation to make the radiation more effective.
There are many suggested mechanisms including
a)direct insult to salivary system - chemo is secreted in the mucous, giving everything a metallic taste.
b)neurotoxicity - chemo damages the nerve system responsible for taste and smell.
c)side effects - chemo causes stomatitis (inflammation and ulceration) and xerostomia (dry mouth due to lack of saliva)which in turn causes dysgeusia and dysosmia.
d)chemo is effective in killing cells that have a high turnover and taste buds have a high turnover rate. One would expect lack of or absent taste bud would result in reduction of ability to taste.
e)chemo causes deficiencies in vitamins and minerals such as zinc which interferes with appetite and taste
We all know that radiation causes dry mouth and ulcers and this would be one of the reasons why radiation is also implicated in the smell and taste disturbances. It also "nukes" taste buds and damages nerves so the outcomes of b) and d) could also be attributed to radiation.
I couldn't find anything about the concept of "heightened smell". Maybe when taste buds and olfactory system regenerate and the nerves recover, it is like the smell of the world after the rain - everything has been washed clean and you get to start again with a fresh set of senses???
Just found this posting and I'm really glad I did. I've been having a really hard time eating and tasting all savoury but sweet has been another story. This has put me in quite a tail spin as I would consider myself somewhat of a "foodie." I'm finally finishing up my last week of radiation with no chemo after a small break. So, my question is after reading a bit of this - do you think I'll have a better chance of recovering my tastebuds and sense of taste in general with not having to go through chemo?
I see patients on here who have had rads only have the same struggles with their eating as others who went with both chemo and rads. With just coming to the end of your treatments, it will be a few weeks before you will be feeling like you are getting better. Its a long process. Have patience and you will get back to your old self or at least pretty close to it. Its a real learning experience adjusting to eating again. One day something will be your favorite food and taste great and the next day it will taste like garbage. Just hang in there and keep trying. Here is list of easy to eat foods, most have a smoother texture to make it easier to eat.
Easy to East Foods Best wishes!!!
this is such a weird type of cancer, but your taste and sense will return, the rad treatment just messes everything up for a while. first week after rad treatment ends is the worst, but hang in and you'll gradually feel better. long process, but life is worth it, good luck
HI All
I probably need to clarify my last post on this thread.
I did not intend for it to sound like chemotherapy is the main culprit for taste/smell dysfunction, just that it should not be discounted.
Almost everyone who undergoes radiation complains of taste and smell disturbances to some degree and this is a known side effect of radiation and one that is discussed on this forum often. I suspect the magnitude of the effect is dependent on where the radiation is aimed and how large an area is "nuked".
Alex started suffering taste and smell disturbances, thick and ropey saliva, dry mouth and ulcers BEFORE any radiation and during his induction chemotherapy. However, induction chemotherapy is not the same as chemo-radiation which is when a chemotherapy agent is used in conjunction with radiation to assist the effect of radiation.
The side effects and mechanisms I attempted to elucidate in the previous post was as a result of my research into the effect of chemotherapy as a course of treatment (ie 2 or 3 chemotherapy agents used together over a number of weeks/months), and may not apply to chemoradiation which is the application of 1 chemo drug (sometimes 2) to give the radiation a "boost". In this instance it would be difficult to tell if it was the chemo, radiation, or the combination of both that was causing the side effects.
Just thought I'd put what I'm experiencing, after 4 years, on this thread just to see if anyone has anything similar. I also experience a more hightened sense of smell now, but what is more weird is the putrid sweet taste I have starting first thing in the morning, without having eaten anything. I wake with a dry mouth, brush my teeth, then a sort of post nasal drip starts, which has that horrible taste, and continues 24/7. All doctors (ENTs/gastros) have eliminated everything and blame it on long-term after-radiation effects. It started about 2 years ago and is driving me nuts
. Anyone? Thanks.
julieann
I was sensitive to smell, especially the hospital smell. I had to wear peppermint oil on my wrist and sniff it as I walked through the doors. For some reason, the smell always hit me as I opened the door. Now when I go in, I take a deep breath just to see how far I have come.
Fascinating thread. To the original poster, I fear your questions may have been somewhat lost in the discussion here. Be patient. Clearly these hyper-sensitivities, whatever the cause, are not uncommon in this challenging context. Don't take it personally. Also, every treatment, and every reaction, is different.
I'm about two years out from my chemo-radiation treatment, went through loss of sweet, then loss of taste-in-general, but never lost my sense of smell. I didn't *notice* an enhancement of smell, but my wife tells me I smell everything before eating it now. I don't feel this is new, but she says so, and perhaps I'm just "testing" for spice levels, since my poor scar-tissue mouth could NOT handle spice for a long time. Most of my taste has returned, I can handle "medium" spice, and my saliva function is about 65% (guessing). I also did go through a period of hyperacusis (greatly increased sensitivity to clanging noises......most annoying), but this, too, has passed. Aside from the dry mouth, my long list of side effects has generally faded away (yay).
Ah, one that stumped my Oncologist was that foods such as pasta sauce would trigger my neck muscles to spasm and cramp.........this was a new one to him!
Wishing everyone going through this, as patient or carer, patience, strength, hope and good support. It can be an incredibly challenging time, and I encourage you to gather as much support as you can. If you don't need it, bonus, but if you do, it's best to have it ready and waiting in the wings.
Last point; for me one of the worst parts was some very bad psychological reactions to the cocktail of drugs used to manage the treatment - whether it was the Fentanyl (an opiate) or the steroids (got the blame from the docs) I'll never know, but for those with sensitivity to drugs, beware! And good luck.