All,
It's been awhile since I've posted here so I just wanted to give everyone an update on my progress. I completed my first week of IMRT and chemo (Cisplatin). I started the chemo and rads on a Tuesday, so it's only been four days. I have a few complications that I wanted to run by the forum for feedback:
1. My left side of the neck (where I had the SND) swelled up really bad on the 3rd day. I saw my RO after my tx and he said that it was a salivary gland(?) issue that was really rare - he hadn't seen it in years. But, he said it could be solved by taking Tylenol. I've been taking Tylenol but it hasn't decreased a whole lot yet - I will take it up with my RO tomorrow but just wondering if anyone has experienced this.
2. I developed a really bad cold late on Friday - I can't breathe through my nose, have a bad headache, coughing, dizziness, etc. I also have been hearing very high pitched noises in my ears. Sometimes it will be in one ear, other times in the other ear, and very rarely both. I don't know if this is considered "ringing in the ears". It's a steady high pitched sound that lasts for about 10 seconds or so. I thought it was because of my sinuses but I don't recall having that before when I had a cold. Again, I will mention it to my RO, but wondering if others had this experience before.
3. Related to the info above, is it okay to continue having rads if you have another issue like a severe cold or flu going on?
4. I have 30 rad appointments scheduled, with chemo as a booster. The chemo is scheduled 21 days apart. I've read other's stories on here that indicate they only have 30 IMRTs and 2 Chemo treatments. It sounds like 2 chemo treatments are normal if you only have 6 weeks of rads instead of 7 weeks. I'm tempted to get out of the last chemo treatment if I'm not having rads that day as I don't really see what the benefit could be.
Thanks in advance for your help!
Gina
Thanks for the update, Gina. I'll try to answer some of your questions, as best I can.
1. Yes. I have swelling in the neck morning, and even more depending what I eat, the next morning, but mine may be different than yours with the prior treatments, surgeries. Lying flat may effect it more, so try lying on an incline to assist drainage. As far as the salivary gland, I'm not sure. Lemons can stimulate salivary flow, and when I drank that I could actually feel the secretions, have slight swelling. Most don't have radiation effects until 10-14 days, but some in a few days.
2. I have tinnitus, hearing loss from chemo. I assume yours is cisplatin, which can cause loss of hearing, tinnitus. The MO can slow the rate of infusion, reduce dosage, change chemo if it's necessary, shorten duration of exposure or just monitor you.
3. Again, tell your doctor. It could be flu like symptoms from chemo and or rads,
4. The three bag larger dose infusions is the norm with cisplatin or weekly lower dose infusions. Some don't finish all 3, due to toxicities, so it's left out, but the chemo is still working as a radiosensitizer to make radiation work better. Don't plan on changing your treatment, which can reduce the overall effectiveness. The doctors will monitor you, and make that judgment.
I hope this helps, and good luck this week.
It is best to check with your doctor but the ringing in the ears is likely a side effect of the chemo. You really should mention it to the chemo doctor so that you can be monitored. When my husband was undergoing treatment, he was advised by the nurses not to take Tylenol as it can suppress a fever and the patient might miss an infection. The RO, though, said to me that while that's the chemo people's take on the matter, in his opinion there would be other signs to look for in the case of an infection aside from the fever. We decided to stop using Tylenol since we didn't really know what are "the other signs of infection" and my husband took his own temperature every night to make sure that it had not gone above 38 degrees Celsius.
My husband had 3 sessions of Cisplatin scheduled together with 35 sessions of RX. Unfortunately, he developed deep vein thrombosis after the second chemo session and the third session was duly cancelled. The chemo sensitizes the cancer cells to the radiation and enhances the efficacy of the radiation. It can also help wipe out any cancer cells that have wandered into the system.
Gina, many members (myself included) were scheduled for 3 doses of chemo. Due to complications the third doses was cancelled. Smaller weekly chemo doses are much easier to tolerate.
The hearing change you need to tell your MO right away. DO NOT take another dose of chemo before you discuss this with your doctor. The hearing problems I have seen members experience is high frequency hearing loss which is permanent.
Hydration and good nutrition will determine how easily you get thru this. Every single day you must take in a minimum of 48 oz of water and 2500 calories. If you can get more in thats even better.
Best wishes with your continuing treatments!
Hi Christine,
[quote]many members (myself included) were scheduled for 3 doses of chemo. Due to complications the third doses was cancelled. Smaller weekly chemo doses are much easier to tolerate.[/quote]What is the general experience to concurrent weekly chemo and radiation? "much easier" is a tasty phrase to drool over than the former situation you describe where folks have to bail on the bi weekly cycle. I'm assuming the scheduled dosing is the same for both infusion options, just different dosing.
Thanks everyone!
By high frequency hearing loss being permanent, does that mean that you are totally deaf? Is it disabling? I conduct most of my business over conference calls, etc. Is it just that you can't hear as well as you used to or make you unable to work?
Also, is it likely that the tinnitus that I'm already experiencing from just the first treatment permanent?
I read an article on About.com that says this:
"How Common Are Ototoxic Side Effects?
How common are ototoxic side effects? The short answer is, "No one really knows." We apparently only see (and record) the tip of the iceberg. For extremely ototoxic drugs such as Cisplatin (used in the treatment of cancer), virtually everyone that takes this drug ends up with hearing loss. According to some researchers, not a single person escapes its ravages�100% of the people taking Cisplatin damage their ears.5 The resulting hearing loss "is usually irreversible (permanent)."8"
Here is the link:
http://deafness.about.com/gi/o.htm?zi=1/XJ&zTi=1&sdn=deafness&cdn=health&tm=55&f=10&su=p284.13.342.ip_&tt=2&bt=1&bts=1&zu=http%3A//www.hearinglosshelp.com/articles/ototoxicupheaval.htm
I know you can't speak for my doctor, but just wondering if this is true and how serious it can be to leading a normal life.
Thanks,
Gina
Gina --
To see the experiences of other OCFers, do this: In the search box (at the upper right of every forum page), type:
+cisplatin +hearing
and hit Go. This will give you all the postings that contain both cisplatin and hearing.
Gina,
If you use a search engine to look for information related to cancer, try to look at well respected medical sites. about.com is not a source to use for any accurate medical information. Any of the major teaching hospitals like mayoclinic, mskcc, MD Anderson, American Cancer Society, and professional peer journals are good.
Don
Gina,
I had partial hearing loss in one ear, but mine, fortunately, was temporary. I can hear just fine in both ears, now. I had the three "big bag" doses of cisplatin, and got through them. I didn't realize that a lot of people didn't make it through the third dose. I just thought that it was something that I had to do!
There are many causes for Ototoxicity, mostly medication induced, and by chemo, mostly platinum based, like Cisplatin, and this is called, Cochlearotoxicity, which can either be reversable, temporary or permament, and is dose dependant, meaning it depends on the dosage of Cisplatin you received, and it's found this occurs in high doses, above 60 mg, instead of lower doses weekly. The Cisplatin is absorbed in the cochlear's sound detecting hearing cells, and damages them, being chemo destroys fast acting cells like hair, nails, nerves, etc. Toxicities also depend on the speed of infusion, and duration of exposure. Also factoring in is any prior hearing problems, underlying medical conditions, like diabetes, that can cause tinnitus, and increase the risk. Tell your doctor, and they can regulate the dosage, stop it or change to another, so not to make this adverse effect permament. You should have a hearing test, prefably before treatment, during, and after to monitor any changes.
While on the subject, chemo can also cause Ocular Toxicity, which can lead to damage to the eyes, especially the optic nerve, leading to blurred vision, perpiheal loss, and even blindess, especially with Cisplatin, other platinum based drugs, taxanes, 5-FU, and others, so if you have any vision changes to tell your doctor, and should have an eye exam too. I'm blind in one eye from chemo.
I hope this helps
Everyone here covered your concerns I just wanted to wish you luck and hugs!
Hi Gina,
As per my previous post around splitting the chemo over 7 doses rather than 3 as it seems as though the side effects you are experiencing are due to the Cisplatin.
See if your MO is also happy to move you across to Carboplatin as the continuous ringing in the ear is no good.
As for the swelling, it will continue to swell around your chin / neck line as the radiotherapy will cause scar tissue to form within the skin. Make sure you plan ahead and talk to your doctors about sorting out physiotherapy post-tx so they can help with scar management & any issues associated with swelling due to lymphedema.
As for your treatment plans, I am sure they will continue with the Radio but may recommend you skip Chemo but this will ultimately be determined by your white & red blood cell counts.
Hope that helps and best of luck with your ongoing treatment!
Hi G,
I'm new here and just started my treatments last week. I'm 3 rads in (of 30) and 1 chemo (cisplatin) out of 6 weekly done.
Nothing really to report other than a slight sunburn feeling to the left side of my neck and a little redness (Special Care Cream helping) and a general feeling of "yuck" this morning from the chemo yesterday. I have several anti-nausea drugs I need to take the next three days.
Concerning the cold. Always ask your docs but I'm Ok'd to use Afrin for nasal congestion. My mask has a mouthpiece built in and it's tight so it's difficult to breath through my mouth. If you have a cold and can't breath, I imagine you have mucous in your throat too. I would ask about a decongestant to dry you up so you can deal with rad treatments easier.
I'm surprised your RO recommended Tylenol. Tylenol can mask a fever and your team would want to know if you develop one, especially with the salivary gland reacting that way. I'd ask again if this hasn't eased up.
Concerning your hearing. Ringing in the ears (tinnitus) and hearing loss are legitimate concerns with Cisplatin. Not all patients are affected by this. Being a musician, my hearing is vital to my livelihood. I had a baseline hearing test and will have it checked again after a few weeks/treatments. My MO feels a 20% loss of hearing is acceptable and will continue Cisplatin should that happen. If it get's worse, we'll switch to Carboplatin for the remaining chemo treatments.
Good luck with everything!
"T"
The article is WRONG! Not everyone who has cisplatin experiences hearing loss. I know many here who have not had any hearing problems at all and have had cisplatin. My hearing was NOT affected at all. I had the 3 big bag method with the 3rd dose cancelled.
To fishman.... A 20% hearing loss is alot!!!! Thats one fifth of your hearing! Think of it this way....out of your 10 fingers, eliminating 2 of them is ok? If it were me, I would question your doc further before ok'ing this type of risk. Its not his hearing that is being lost, and your hearing is part of how you make a living. Remember that doctor works for you.
Here are a couple articles which discus the use of cisplatin and also hearing loss...
NCBI Cisplatin and hearing loss Cisplatin side effects
Christine,
20% is a lot when you look at it that way
After meeting with the audiologist yesterday, she was confident, based on my test results, I would be Ok. Perhaps a bit of high frequency loss which wouldn't affect me too much as most of what I do falls in the mid-range frequencies.
Also, hearing loss with Cisplatin is more likely with higher dose treatments. I'm getting a medium dose over 6 weeks. The test was more of a precautionary measure to monitor the situation. Being that Cisplatin is more effective than Carboplatin, I'd rather lose those two fingers and be NED than take the chance of not curing this. Hearing loss is not one of the primary side effects from my understanding but it happens frequently enough to warrant monitoring in my situation.
"T"