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What to anticipate rounds 6-12

galba
Posts: 4
Joined: May 2015

Haven't been here in a long time.  Emotionally I have needed to distance myself.  Ironically chemo and all of it's side effects make that a tad challenging.  Decided maybe what I need is the support.  i have #6 this Wednesday.  Anxious to learn from others who are further along or done!  Thus far neuropahty hasn't been too terrible.  It is intermittent which I understnad is good.  Still I plan on asking MD to stop at #8 from all I have read.  But the fatigue is kicking my butt.  Chemo Wed with Thursday and Friday feeling sluggish.  Friday the pump comes off and Saturday and Sunday are pretty miserable.  This last round Monday-Thursday weren't that great either with fatiguing so easily.  Question-will this get even worse? 

I have been doing okay eating but have quirky cravings.  Lately quite often everything tastes so much like metal my biggest challenge is drinking enough.  After #4 I got seriously dehyrdated so after #5 they preventively gave me fluids.  I would LOVE to drink more but just can't do it.  On top of that everyone says "sugar feeds cancer" but what's left of my tast buds craves the sugary things quite often.  Thankfully fruit is now part of that craving but I have gone through 2 boxes of Lucky Charms Cry  Before chemo I had a huge wonderful well researched plan of how healthy I would eat.  Praying I'm not killing myself with eating sugar.

Basically I have told my husband I hope to make it through these 12 rounds and then will pray for clean scans forever more.  I am Stage 3b.  Before my diagnosis I feel empathy for those going through this hell thinking i never could.  Well...here I am and it is as bad as I had imagined.  

So, if you have any wisdom to share about a supplement you took that helped or a yoga class or a good anxiety drug (I only have Lorazipam) I am all ears. Thanks for listening.

 

JanJan63's picture
JanJan63
Posts: 2482
Joined: Sep 2014

I wish I had some great advice for you but I don't. I was going to quit my chemo after the 8th round but ended up going to emergency with a blood clot in my lung as I've mentioned on other posts on here so that was the end of my chemo. The neuropathy was terrible before that but it was winter so being cold sensitive was magnified by that. I had an appintment for two days after I was rushed to the hospital and I was going to tell my oncologist then that I wasn't going to complete my chemo. I'd really been on the fence about doing it to start with. And then there's the post on here about how in Europe they only do eight rounds as a standard instead of twelve. That made me feel a lot better.

I'm not one who concerns myself with the whole 'sugar is bad' theory. First, all cells need sugars. You can't get away from sugars in what you consume, it's everywhere. I know of two people who went to Mexico for the treatment where they take your blood out and 'clean' it to remove all sugars while you're on a special sugar free diet. It didn't help either one. On the other hand, I have a friend who swears that his cancer hasn't returned because he's really cut back on sugar. How does he quantify that? How can he know if his cancer didn't return because of that? He had a lump in his neck removed, it wasn't an invasive cancer and it was early stage. It likely wouldn't have come back anyway.

I happen to really like drinking Pepsi but I'm not one for candy, chocolate, cookies and cakes or pastries. I still drink Pepsi now. I remember my husband telling on me to my cancer surgeon that I drink a couple of cans of Pepsi a day at my initial meeting with him. My surgeon looked at him and said "do you think Pepsi gave her cancer?" My husband said no and my surgeon said "neither do I". And I love fruit juices and they're full of sugar, almost as much as the Pepsi.

I bet you get over the sugar cravings. I would try not to stress about it. Stess is supposed to be one thing that is really bad for cancer.

And best of luck for a long, healthy life. I pray that we all get that.

Jan

John212's picture
John212
Posts: 116
Joined: Jan 2015

I didn't have much trouble with odd tastes from the chemo (also stage 3b here) but I know that some folks have said that drinking what's sold as "nursery water" helped alleviate those symptoms. I guess it works because the nursery water - which is just distilled water as far as I can tell - doesn't have some of the purification chemicals in it that our tap water can contain. 

For me, anxiety about my condition made it difficult to sleep for the first few rounds of chemo. Then the fatigue took over and I easily slept ten or twelve hours per night with an afternoon nap as well. I also took Lorazipam. I had already been taking a low dose of Trazodone as a sleep aid, and the Lorazipam worked well with it.

NewHere's picture
NewHere
Posts: 1143
Joined: Feb 2015

Sorry you are going through all this.  For me it has been managable.  If you take a look here, some of my experiences about it all (figure it is easier than me typing it again, I am a bit tired today and just woke up from my nap Laughing)  It is in the treatment section.  Basically my Onc does not use more than 9 treatments with the Ox due to the dangers (neuropathy) outweighting the incremental benefit of 12 treaments with Ox as compared to 9.  I was able to make 8 before he thought the Ox neuropathy had built up enough to cause concern and pull it.

http://csn.cancer.org/user/237551

Also a bit in my post here

http://csn.cancer.org/node/295822

As to eating, I was concerned with weight loss and every other week tried to eat more to keep weight up.  I also had more sugar (would have piece of cake after going out to lunch for instance, whereas I normally wouldn't) due to cravings.  Still tried to eat healthy overall (which I also did before surgery) in terms of fruits, vegatables, not much red meat etc., but when I wanted something during this time enough to get myself to eat, I would.  I am not too sure that two boxes of Lucky Charms over 10 weeks is that bad, though I also think the same thing about eating sugar feeding the cancer.  

I have been going to baseball games, been good enough to do so.  A minor league team which has made me feel much better in terms of getting out and doing things (though some days I am dragging a bit) emotionally (doing something I love) and physically in terms of walking around the stadium to watch and photograph from various places.

It is not what I had on my to do list (Stage IIIC cancer and chemo Laughing) but trying to keep as positive as possible and the great help from people here, I made it pretty well.  Last chemo for me later this week and looking forward to clean scans myself.

Hang in there, you are half way there and the bad things become more of a memory.

lizard44's picture
lizard44
Posts: 409
Joined: Apr 2015

you are having such a rough time with the chemo. I'm stage four and receiving neoadjuvant chemo every other week: Avastin,  Oxaliplatin, Fusilev and 5FU,   three hours in the infusion center and then a portable pump for 46 hours of 5FU.  We're hoping to shrink  the rectal tumor and 1.5 cm liver mass before surgery.  I'm pretty sure the rectal tumor has shrunk.  I no longer have the  weird bowel movements, bleeding and   constant rectal pain that  I had before.  We aren't sure  how the chemo  has affected the liver mass that lit up like a Christmas tree on the PET scan; we'll know more after the next scan.  I'm scheduled for  two more treatments, for a total of eight, then another scan. I almost  feel guilty for posting, because I've  suffered very few really horrible side effects so far and have been able,   a few days after treatment, to   have enough energy to  do a lot of the activities I did before, get out and even garden a little.  I have had a problem with a low white blood cell counts which delayed two treatments, but now get  Neupogen shots in the week between treatments. I try to avoid crowded situations where I might  pick up infections, so go to the farmers market or grocery store before the crowds hit.  I just finished round six at the center yesterday,and it did seem that the fatigue hit a little harder this time, but not too terribly bad. I've been  getting   face flushing  from the 5-FU, but that's more annoying that debilitating and goes away pretty quickly once the pump comes off. I haven't suffered any neuropathy so far. My appetite is good- once I get past those first few bites where my salivary glands and jaw decide to act weird. I try to eat  healthy- we  eat a lot of fish and chicken,  hardly ever any beef or pork, and lots of fruits and vegetable.  I do indulge a craving for sweet stuff every once in a while,  without guilt. I've even  gained a few pounds, which is a good thing since I weighed less than 80 pounds when we started.  Since I was told to avoid anything cold, I haven't had a cold drink or eaten any chilled food  since May 26, the day before my fisrt treatment. That has been a struggle with our temps  being so hot this summer- I've often  craved a tall icy glass of lemonade or a bowl of ice cream! I don't know it that's helped to  keep  the neuropathy at bay or not. I have been attending a therapeutic yoga class once a week.  Almost all of us in the class have some medical condition and several have had recent surgery or, like me   are on or have just finished, chemo- several of us do chair yoga and none of us will be doing headstands any time soon! :-) The  exercises are both stimulating and very relaxing, and I also have an audio file  to play on my Kindle  while in the infusion chair of a tape with a yoga breathing meditation exercises.  Very relaxing, and sometimes it's good to be reminded to "Just breathe." I highly recommend yoga or something similar.   I hope you get through your chemo without any more  problems than you're already having and can soon see the light at the end of the tunnel. 

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