Opinions about weekly chemo. Yikes!

swopoe said:

My husband had weekly

My husband had weekly cisplatin for 6 weeks. He was also in a gray area where he really didn't need it, per se, but the onc recommended it. His med onc also said that the side effects would likely not be severe. And honestly, aside from some mild ringing in the ears in the later weeks of treatment (which went away shortly after chemo was finished), my husband really had no other side effects. His blood counts were normal every week, he never once had a fever, no nausea from chemo, nothing. And he always went into work in the office the day after chemo too. He did have the typical radiation side effects though, but the chemo was no biggie. Other than being really time consuming (4 hrs total on chemo days including hydration).

Swopoe, it's interesting how different doctors tell you very different things, isn't it? Your husband's med onc said the side effects would likely not be severe, and they were not. How wonderful! It's what the med onc at the first major cancer center told me, so it didn't worry me quite so much. It wasn't until the third doc, at a larger cancer center said she "was lying" (in those words), that I started getting worried. The guy who gave me the parade of horribles about side effects and toxicity is the guy who will be overseeing my chemo. :-O Sure enough, what he said was 100% listed as Cisplatin potential side effects. What I have read on this board just confirms it. A scary, but necessary risk. 

I've been reading a book written by an oncological psychiatrist that is helping me a bit, and it says that chemo is nowhere near as bad as it used to be. However, I guess it would depend on many factors, including the dose, the type, and the duration, as well as the individual patient. I'm supposed to get 40 mg. of Cisplatin per week. I am going to use all the tips on the forum and hope for the best. Many thanks, and so glad that your husband did okay.

Kari2007 said:

Cisplatin

I also had Cisplatin, but in three large doses spaced three weeks apart while getting rads. My oncologist was very upfront and said, "It's the chemo that gives chemo a bad name." But, he said research has shown to decrease the likelihood of a recurrence. He felt that cease of my young age and otherwise good health, I should go this route to give myself the best chances.

Honestly, I can't say that it increased the side effects of the radiation. My radiation side effects weren't all that bad until around week 5. The nausea was really well controlled for me with medication. The worst side effect was the chemo brain. For about a week after my infusions, I'd be lost in this fog. Very hard to concentrate or have conversations. Super fatigued and I slept a lot. Second and third week I'd be feeling better and then it'd be time for another round. By the final chemo, I was hoping that my counts would be too low to get my infusion because I was already so laid up by the rads. I did it, though, and survived. You'll get through this, too, and when it's done it'll seem like a blur.

Kari

Thanks, Kari! I am going to keep repeating that to myself. "I will survive this treatment." It really helps to read people's stories on this forum. There are days when I question how it will be, and if I am going to come through this okay. I'm told by the docs that I'm "healthy except for the cancer." lol  The tumor is out, but the rads and chemo are "clean-up" to make sure we zap anything that might be left and clean up lymph nodes that were negative on a PET, but not dissected. Thanks for your encouragement! Best to you.

EWadeLaw said:

Cisplatin weekly here for 7

Cisplatin weekly here for 7 weeks though I missed a couple of weeks due to being too sick. I had pretty severe nasea from the chemo. I was also told that the chemo just helped the radiation be more effective and that it would help reduce the chance of reoccurance, which pretty much made it worth it. Other issues that I saw from the chemo was the stereotypical "chemo-brain" ,ringing in my ears, kidney pain, and general crappy feeling. Some things are hard to separate from the radiation as to what really caused it. 

 

EWadeLaw, wow... I'm so sorry you had such a rough time. It sounds like your docs were on top of the situation, though, and knew when to give you a break. Were you given IV anti-nausea drugs and a prescription to help control your nausea? 

Did your ears get back to normal after you were done with chemo? The med onc who will be overseeng my treatments told me that if I had hearing loss, it could be permanent, and that if I had kidney damage, that could be permanent too. The guy was just so filled with happy words! Seriously, my husband and I left that office with our heads spinning.  And it takes a lot for that to happen.  :-O

Barbaraek said:

All this Baltimore talk

is making me miss my steamed crabs with rock salt and old bay!

regarding needle sticks...if you are getting regular chemo, chances are they will put in a port so they don't have to do so many sticks for IVs. I read somewhere too to use crushed ice during chemo as it MAY minimize mouth sores.

My husband had full dose Cisplatin 2x during six weeks of rads, and then once after rads were completed in combination with 5 FU. Everyone will respond differently. The Cisplatin is a radiation enhancer - it helps the radiation effectively destroy the cancer. Some side effects may include nausea, fatigue and hearing loss.

chemo infusion does take a while. My husband worked on his laptop for some of it, and slept for some of it. I always brought along some work to do as well as snacks. Because he had a full dose of Cisplatin (100 mg) it affected his white blood cell count. He had neutropenia twice and landed in the hospital for it, even though he had Neulasta administered before the chemo. His case may be atypical though - his chemo doc once called him "a complication magnet"!

I'm pulling for you and hope all goes well.

Barbara

Hi, Barbara! I am definitely going to be eating crabs for as long as my mouth sores allow. My rad onc said he will be adding liquid Oxy to my Gabapentin as soon as the pain starts, and he has an algorithm app that I downloaded while I saw him this week, which will generate dose changes quickly, depending on my pain score. According to him, even with the weekly chemo, he thinks he can keep me drinking and eating pretty well through treatment because he has fine-tuned this thing. I guess we shall see, and I will report back. This guy is pretty amazing. He has focused a lot of study on pain/swallowing management over the years and thanks to good timing (finally, something went right), I am in his current study with this app. So, hopefully, crabs here I come!  

Were you able to hang out with your husband during his infusions, or did they kick you out into the waiting room? I'm trying to get a handle on this whole chemo thing so that my husband will know what is expected. He will be working on his laptop remotely during our 7 weeks ahead and handling things via conference calls where necessary. If he can't be with me, he may as well do something else for 4.5 hours and not sit in a waiting room, although I guess it would be comforting to have him close by. 

phrannie51 said:

I also had Cisplatin during

radiation....like Kari, mine came in the large dose every three weeks.  I did get a little sick for about 3 - 5 days afterwards, then I'd have two weeks of feeling as good as I could considering I was getting rads.  I had NPC, tho.....which meant that after rads were over, I had another 3 large doses of Cisplatin + a 4 day pump of 5FU.  Considering how much Cisplatin I had, my side effects aren't bad.  I have neuropathy in my fingers (that's the one that drives me crazy sometimes)....and ringing in my ears 24/7...which I seem to have gotten used to.  My blood counts did get low during the treatment...I got many shots of Neupegen to boost my WBC's and a few transfusions to boost my hemaglobin....but that was in the last 3 months of chemo.

I'm of the opinion to hit cancer with a sledge hammer first time out....the weekly chemo's are of a lower dose....and I've seen many more people getting the weekly dose, rather than the 3 large doses over the last two years, which probably makes the side effects more tolerable. 

p

Thank you, Phrannie. I agree that the sledge hammer approach is the one that will give me fewer regrets later, quite frankly. I was just apprehensive and my brain was doing all sorts of calisthenics in an attempt to rationalize my way out of chemo. You guys on this forum are great at keeping things real.  I appreciate that very much.

What you wrote about your chemo doses and the responses you had makes a lot of sense. I think they still do the three infusions at higher doses at some centers, depending on the individual situation. And there are people who still get nasty side effects with the lower weekly infusions, as you can see on this thread. However, it is what it is. It has to be done. It's time to put on my big girl pants. 

Thanks for your encouragement!