Hello all, I've got a few questions for those of you who did chemo concurrent with radiation.
Basically, what was it like?
Here's my set-up. I did IMRT the first go-around, and they radiated my mouth and upper neck with IMRT. Not sure why they didn't do the whole neck, but my recurrence was just below the field. Argg..
Anyway, I had a radical neck dissection in June and they are recommending a second round of IMRT to the lower neck and are recommending chemo along with it. They are siting the much publicized new studies released that talk about chemo helping reduce rates of local recurrence and in some cases appear to help with survival too.
I guess the thought of having chemo for some reason spooks me pretty good. Radiation a second time does, too, but not as much. The list of side effects for chemo goes way beyond constipation and some hair loss (which is occuring naturally for me anyway, it seems). Will I lose my hearing, kidneys, liver, etc? Yikes.
Any way, just curious to know what folks experienced with chemo, what side effects are most prevalent, etc. Anything to watch out for? Anything I can do to help myself ease the side effects? They said I would get chemo treatments every three weeks, either two or three times. Wonder why so much time between treatments?
Thanks again for any help folks can provide... All of you are gems...
Hi Eric, I had concurrent radiation and cisplatin to treat my tonsil cancer. No surgery done. I am not a medical professional so there are some questions I cannot answer. Just to share my experience during treatment and the side effects.I had cisplatin once every week for 4 consecutive weeks. The most obvious effect was nausea and loss of appetite. I guess the chemo also affected my emotional state as well because I felt very tired and depressed after the injection for 2 to 3 days. Then I felt better until the next injection. No hair loss in my case but a serious drop in white blood cell count and I suffered from high fever when I finished all the 4 rounds of cisplatin.I had to be admitted to hospital for observation and medication. At that time I still had a week of radiation not yet done. No damage on my hearing although I heard some annoying sound (that didn't exist) for about a month. You need to strengthen your body before you have your chemo. Your doctor should give you a list of all possible side effects, short term or chronic, before your first treatment. He should explain every item to you so that you know what you may expect.People react very differently but most of us can go through it.
Hey Eric, I had exactly the same treatment it sounds like you're having. 35 rad treatments, 3 cisplatin treatments every 21 days and then neck dissection. I can only recount what my experience was as some of your questions and concerns are beyond my knowledge. The new studies seem to indicate best results with chemo/rad in concert, so I went that way and recommend it to anyone with similar cancer. The chemo was not that big a thing at all. They give you lots of anti-nausea meds before the chemo. I did have a bad reaction to one of the anti-nausia meds, I don't remember which one, and they can't tell beforehand which will give you a problem, but they just switched me over to another med and then no problem. Also, they put me to sleep when the chemo was started, so ask for the same. I had no problems with the chemo part of the treatment at all. It was done in the hospital and I was out in 24-36 hours and back to work the following Monday (I checked in Thursday, had chemo Friday, and was home Saturday or Sunday early). The reason for the chemo and rad together, as I understand it is two-fold, the chemo softens up the tumor and makes it more suseptable to rad and it will also search out other cancers in the body and destroy it. Like small undetected microcells which have metastasised to other places. That was one of the things I was particularly interested in as I smoked for almost 40 years and expected lung cancer to be the one that got me, not tonsil. So I thought it would be a good idea to get something that would fight undetected cells in other places. I did have some hair loss, but you couldn't tell as it was minor in scope and what was left covered any loss. Again, I had no ill affects from the chemo. The rad, on the other hand, liked to killed me. Of course, as they say, we are all different. I pray that this time around all of the cancer will be destroyed and you will completely beat it. Let them do their thing and don't worry about the chemo so much, it wasn't a big thing with me. Turn it over to the Lord and He will comfort you.
Hi Eric. Well, looks like the HK contingent is up tonight and answering this one. I did the rad/chemo with the Cisplatin also, first time in October/November of 2002, second time in April/May of 2003.
The big thing with Cisplatin is making sure you drink lots of fluid, and that they hydrate you before and afterward because it can cause kidney damage if you aren't careful about fluid intake. Just need to keep the old system flushed. In my case we did about 7mg (I think) once a week, but the whole routine would take about 6 hours. Did IMRT in the morning about 8:30, then chemo all day, then the second IMRT about 4:30.
Firt they did blood test, checking normal stuff they check for during chemo, then ran a half bag of saline, then some anti nausia med, another med of something I don't remember, then the Cisplatin, then another half bag of saline. They measured urine output and fluid intake.
I didn't realy have any nausea as I have mentioned before, I would get real hungry the night of the treatment and next day would have a bout with stomach acid, have to do the Tums routine. First go around I had 7 treatments and didn't have any hearing issues. Second go around about 4 sessions in I started getting ringing in the right ear, strange sensations there. Doc discontinued the Cisplatin at that point, he thought by then I had enough to do the job anyway. Got the usual side effect of tingling in the feet and legs when I moved my head vertically, like when I nodded, that still goes on very mildly every once in a while. Right ear is still sensitive to sound a little, but recent check by audiologist says hearing and function is normal.
Like Karen, for a few months afterward I would have bouts of depression, and that lasted for about 3 months. One of my other posts mentioned my dealings with sperm count, which is 0 at this point, caused by the chemo. Figure 3 to 5 years for that to get back to normal if at all.
No hair loss either, I too had tiredness, but that can also be caused by the rad or the combination of the two.
All in all, on the second go around, since they were just doing my neck with rad, I didn't have any major issues, just the to be expected tiredness, etc. Did loose about 15 pounds, but was able to run around HK on MTR, bus, ferry and make the trip back home to Dongguan every weekend and run around there. On the nicer days I'd walk home from the treatments, about a 15 minute walk, all down hill.
Hope this all helps. I know the sound "chemo" is a scary thing, but in this case if you get the same sort of deal I had it's not as bad as some treatments, but then everyone is different and reacts differently.
Chemo was hard for me. Like Karen I was scheduled for 3 treatments every 21 days. At the end of 21 days the tumor had completely melted. I was pretty nauseated from the chemo about starting a day or two afterwards and slowly dimishing by the end of a week or 2. The second round was worse. They shortened it to 2 treatments. Getting the chemo itself was no big deal and it only took about 3-4 hours at the infusion unit I was at (protocol being similar to others postings). The thing I remember the most was, having a metallic taste, smelling like a chemical factory and having especially pungent body odor for a while after the chemo - then it all went away. I had a fair amount of ringing in the ears as well.
They should give you a baseline hearing test, kidney function, liver function, potassium and other blood tests prior to treatment. You should get additional bloodwork every week. I had an acid problem also so I took industrial strength Pepcid AC (Famotidine). Some antiemetic medications like Zofran are only effective for 3-5 days then you must switch. Make sure you have your drugs lined up ahead of time. Keep your fluid intake up (2-3 liters a day).
Oddly enough, subseqent hearing tests showed an improvement!
I made the decision to go with this intitially because it afforded an additional 6% to the 5 year survival rate. Subseqent studies have upped that to as high as 14%. As miserable as it was I would do it again.
My understanding (and correct me if I'm wrong) is that Cisplatin is a radiation enhancer and not a systemic type of chemo - in other words it will not take out cancer cells in other areas (although the poisoning effect sure had me fooled). I think this is why some folks get 5FU as well. Cisplatin also does very little bone marrow damage which the other forms of chemo do.
Others have warned you already about adverse effects so I won't repeat that here.
Not everyone reacts like me to chemo (Cisplatin)- some folks sail through it.
Having dodged the bullet, I must chime in here about a rare side effect of Cisplatin -- total hearing loss. After my first treatment, I had an extreme change in hearing. When I showed up for the third round, the doc, fortunately, knew that for less than 1% of people, this stuff can cause total deafness. Got switched to Carboplatin and Taxol. I did not get sick with any of them, but the Taxol did cause me to lose head hair, but not body hair. A benefit was that my hair grew back thicker than before. Had infusions as an outpatient, and went to rad after. My white count suffered greatly, which slowed me down for a couple of weeks, but other than that no problems and I would do it again in a New York minute. That was two years ago, so thus far, it was a good decision. I think you are very wise to consider it.
My husband had chemo along with his 37 radiation treatments. He was meant to have chemo every week, but only ended up having 4 treatments due to low white blood cell counts. For him, nausea would set in about 3 days after chemo and last for a couple of days. Chemo made the treatments more difficult, but I know that now, at 15 months post-treatment, he is glad that he did everything that he could to beat the cancer.
I know that this is a really difficult time for you. But know that things will get better!
Thanks all for the input. It does sound like everyone has a different story to tell, though some side effects seem constant.
Fortunately, I am a heavy water drinker anyway (after giving up on soda last fall) and should be OK in the hydration department. I'll share my story as we go along for others who may follow behind me.
As for hearing problems, I may be shot in that department already. All those nights as a teenager falling to sleep with my Walkman on listening to Journey or U2 or Rush...
Joanna -- did your hearing return to normal or has that remained a problem for you?
I, too, had 3 rounds of cisplatin during the course of my 37 rad treatments. I did feel nausea a couple of days after treatment but never threw up. I do remember having a problem with acid reflux after chemo treatments and constipation was a problem but that wasn't helped any by the meds I was on. I did and still have a hearing problem though not as severe by any means that Joanna experienced. I have a constant ringing / humming in my ears to this day. Sometimes I hardly notice it but other times it's a little more annoying. I also had an ear infection in both ears right after treatment ended that antibiotics couldn't kill so my ENT placed tubes in my ears which I still have. My ENT said the infection was probably a result of the radiation more than the result of the cisplatin. Anyway, I can live with the ringing in my ears ... I just try to "tune" it out. Other than that I found the chemo sessions to be no big deal when compared to the radiation but that's just my own experience. Keep fighting the good fight and I'll be thinking about you in my prayers.
Sorry, Eric. I should have said that my hearing is quite normal, despite some loud concerts in my youth. The extreme changes tapered off to nothing in about a week or 10 days. The value of this forum is that I mentioned this to another member, just as an aside, and she knew what it meant, thus saving my hearing! Later I asked my regular oncologist, who is young, about it. He had never heard of that side effect. Because I am one of the luckiest persons I know, on the day I showed up for Cisplatin No. 3, the young doc was gone someplace and his replacement was an older doc who knew what was what. To be specific, the change was that ordinary noise, like crumbling paper, was exquisitely painful to me, as were most voices. I wore ear plugs for a week. The older doc said he had one patient like that a long time ago, who did end up deaf as a post because nobody knew what that change meant. About nausea, I didn't experience any, but I checked my journal and in it I complained that the drugs given me to prevent it made me really, really spaced out for a couple of days. In retrospect, I think I would rather have thrown up and remained clear headed. Go for the chemo! However it works out, it is just a short period in your life. Lots of us, some strong and stubborn and some scared, have all come though and you will too. I remember that in the infusion center, there must be 50 beds, and I was always embarrassed to feel so good when everyone around me looked terribly, terribly ill. Chemo is, in my opinion, more of a nuisance because it takes so much time, than the rigors of rad, with which you are familiar. You can, and should, do this, Eric.
Joanna, who is SO good at telling everyone else what to do (grin)
My hubby had 7 chemo treatments on each Monday during his radiation. He had Cisplatin and Taxol. It thinned his hair, but no real hair loss. He had problems with acid reflux and some major constipation in the beginning, all of which got under control with different meds. He was fine on Monday and Tuesday, but he got weaker and more tired Wed.-Fri. He got better over the weekend in time to start it all over again. However, the chemo seemed like a walk in the park compared to the radiation (he wasn't able to have IMRT).
Take care and God bless,
My mom was scheduled for 6 chemo treatments the same as yours but after the second treatment she broke out in a rash that covered her entire body. She doesn't do well with medication and is allergic to some medications as well. After her second treatment they stopped the chemo because they did not want her reactions to get worse. She experienced a lot of naseua but she had a harder time with the radiation. Since they say that the chemo enhances the radiation the doctors felt that the radiation was doing what is was supposed to do and they stopped he chemo treatments.
Glad to hear you are so positive even though you already know what you are about to endure with another round of radiation. My prayers and thoughts are with you and your family and as my mom's ENT says "Your swinging a huge bat at the cancer" this time!
I was given Cisplatin. 1st round was easy. I got sick the next day after breakfast & that was it. 2nd round left me very nauseous for days, lost my voice, and sensitive to smells. I think my bad reaction was the nurse
That last sentence was well-put... trust me, I'm a writer -- I know good writing when I see it... lol
My father is receiving cisplatin and radiation as well. From reading through
this forum, seems like people have received cisplatin at different intervals, some every 21 days, my father is receiving it once a week and at first they were going to give it to him 3 times a week. Does anyone know why there is such a discrepancy in how often it is given? I understand it probably has to do with each individual case, but if anyone knows if one interval is more effective then the other, I would really appreciate the help. Also, I was reading a few studies done on the effectiveness of radiation and cisplatin and one stated that it is more effective if cisplatin is administered 3 hours after radiation is given rather then before. I was not aware that it made a difference if cisplatin is given directly before or after radiation. I could not find any other studies on the matter and any info would help.
my understanding was it's most effective every 21 days but I would ask the oncologist. I always had my dose after treatment. A good thing since the main nausea event will occur about 2 hours after infusion. Cisplatin's toxicity is well known and they may have a different regime for your father based on other health conditions. Strangely, in all of the sites I visited, no mention of radiation was made. All this time I thought that Cisplatin had to be an adjunct to radiation but that is not the case.
The link below will tell you more than you want to know about it, but it is interesting: http://www2.mrc-lmb.cam.ac.uk/personal/sl/Html/Frames.html
I'm doing the cisplatin every 21 days as well, not really sure why... I'm also doing it right before radiation... Fortunately, I haven't had a "main nausea" event, thankfully, just a week or so of queasiness... which might be as bad...
I'm scheduled for one more round on Aug. 31...
I believe you will find a detailed answer to the 21 day question in the link in my earlier post. It is efficacious for about 3 weeks. The second Tx was far worse than the first for me. I shudder to think if I could have tolerated a third Tx - they canceled the third one. Whatever, it did the trick, I have been cancer free for 18 months now. Keep your fluid intake up to protect your liver and kidneys.
SLF, my experience was tongue cancer, spread to several lymph nodes. You didn't mention where the primary was but from your post I'm assuming it was tongue.
Getting follow up radiation will probably increase the probablility of long term survival by a large percentage. Side efffects can be reduced by the type of rad done, XRT where there is a wide beam approach vs IMRT where the beam is aimed specifically at the tumors and manipulated to miss such things as salivary glands etc. Chemo, mainly Cisplatin is used as an addition to help the radiaton do it's job.
I had a recurrance about 6 months after finishing treatment for the first surgery, the cancer had spread to the opposide side and gotten into 2 lymph nodes. Surgery again followed by IMRT and Cisplatin, recommended by the doc to stop the spread hopefully once and for all. I'm a year plus post that treatment and last scan was a-ok.
Unfortunatly, from what I see treatment seems to vary country by country, and at least in US and HK (where I had treatment) surgery is almost always followed by rad+chemo to stop any spread.
I'd advocate to the doc do to the rad+chemo. In this battle you want all the weapons you can get ahold of. Just My Humble Opinion.