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New here- advice on managing chemo & it's my birthday today

chicagogirl89
Posts: 5
Joined: Sep 2016

Hi all:

Today is my 46th birthday and I am trying to recover from the side effects of my first chemo treatment.  I had my port put in on Wednesday and my first treatment on Friday with a two hour Oxalalipin (spelling??) infusion onsite.  Then I went home with a 5FU (spelling??) pump for 46 hours.  The Oxa side effects of the cold sensitivity have been pretty crummy.  When drinking something cold, it feels as if ice shards are forming in my throat.  I've also had touch sensitivity when I tested picking up something cold. 

The toughest part for me has been the nausea with some vomiting.  I've had no appetitite and couldn't keep anything down Saturday or Sunday at all.  The doctor gave me Zofran and something that starts with a P for nausea but it didn't seem to help as it just came back up.  After a call, she prescribed the Zofran that dissolves under your tongue and that seemed to work a little better.  Yesterday I was able to keep down some saltine crackers and a little soup, followed by some apple sauce.  But it's been very hard- the smell of food makes me queasy and although the food stays down my stomach is still roiling. 

Does anyone have any suggestions on alternative medications or maybe some thoughts on foods that have been tolerated well?  Any thoughts on getting the nausea under control are greatly appreciated or on managing chemo side effects in general???

I've also experienced headache and tooth pain which seemed to be releived by Advil and also diahrrea which has been controlled by Imodium.

I'm scheduled for 7 more sessions of chemo to be done every two weeks.  Then a couple weeks off followed by radiation/chemo.

My story - After being told I had internal hemmorhoids that were causing my rectal pain and bleeding for several months, I was finally scheduled for a colonoscopy after a visit to the emergency room August 1st.  I was diagnosed with rectal cancer at the anal verge on August 10th.  I was told there was no way to avoid a permanent ostomy by the original surgeon but sought a second opinion and am now part of a clinical trial that I am praying will help me avoid surgery (and an ostomy) altogether.  My cancer is confined to the rectum with no evidence of lymph node involvement and I had clean lung and liver scans.  Please - if you know something is wrong demand a colonoscopy. 

I'm also single and live alone with my two kitties.  My ex-boyfriend has been very supportive but it isn't the same as having someone with you all the time.

Are there any other singles out there who are walking through this largely alone?

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

And sorry that you  are going through this, but  you will  get support from  folks here- they are very knowledgeable and supportive. I can't help  with the nausea, because thankfully, that has never been a problem with me.  I  do get anti-nausea, anti-diarrhea meds and a steroid (palonosetron hydrochloride,  fosaprepitant, dexamethasone sodium phosphate)  before every chemo treatment, and they seem to prevent any problems.  I do avoid a lot of foods now, like fried foods, processed food, sugary food, most meats except for fish and chicken, and veggies that cause gas, like  broccoli, cabbage, etc. I avoid   dairy products for the most  part, but do eat a fair amount of yogurt, which doesn't seem to bother me, and take probiotics.

As far as the   cold sensitivity  from the oxaliplatin,  I was told  at the outset to avoid eating or drinking anything cold and to wear gloves before touching anything cold.  I kept a pair of gloves next to the  fridge and even wore gloves when grocery shopping, for reaching into  freezer  cases. I also  wore socks all the time, since  the oncologist told me  to  not let my feet get cold and those measures  helped me avoifd any major problems. I do have a slight case of  neuropathy in one foot now,  months after finishing  the oxaliplatin, but it's nowhere near as bad as what some here have described.

I also have a  low rectal  tumor, diagnosed  17 months ago, and at some point may indeed need a colostomy, but was also diagnosed with  mets to the liver, which made me Stage 4  from the beginning.   My surgeon is also taking a non-surgical management approach to the rectal tumor for now, since the chemo and radiation  have shrunk it to the point it's no longer showing on scans and he was more concerned that we  get rid of the liver mets first. I had an ablation on the liver mets last month and am now back on chemo ( Erbitux and irinotecan) waiting to see what the next scan shows. In the meantime, I've had a pretty good  17 months, and have been able to keep up with most activities,  while taking off a few days to rest up after each infusion.  I hope  you are able to get your nausea  and other problems  under control and that you are able to eat -  you need to keep your body well nourished to help it fight back. Good luck, and  let us know how your treatments are going.

Grace

chicagogirl89
Posts: 5
Joined: Sep 2016

Thanks so much for responding Grace-  I spoke with the research  nurse today and she mentioned they would be adjusting my anti-nausea medication at my next treatment.  Hopefully in alignment with what's working for you.  I know everyone is an individual but it's encouraging to know that someone else is escaping the nausea.

danker
Posts: 1198
Joined: Apr 2012

I'm a Chicago guy who was apparently beat it!!! I'v been NED for six years.   Look up my history  to see what I went through.  It may be a bumpy ride but it is doable.  Best of luch to you!!!

ellend
Posts: 87
Joined: Apr 2016

Happy Birthday!

Chemo is a crummy thing to have to go through on your birthday. I can't really help you with the nausea because like Grace, I get anti-nausea drugs infused before the Oxalipilatin. If you tell the practitioners, they might be able to adjust the drugs to reduce or eliminate the nausea. I get slightly nauseous after treatment, but not so bad that I've had to take the drugs they prescribed. I have a prescription for Ondansetron (sp?) if I need it. Ginger tea helps some.

It sounds like almost everyone on this regimen gets the cold sensitivity. I have to let the water run on hot before washing my hands and drink room temperature liquids. I also wear socks and sometimes slippers to walk in the house and use gloves to get things out of the fridge. It gets better by the end of the week, but the more treatments the longer it takes to go away.

I have an iliostomy, so can't really comment on the diarrhea or constipation. I do try to avoid food that gives me gas, since I don't really want the bag to blow out. Other than that, you might keep a food diary to see what foods aggrevate or alleviate your issue.

I was fortunate that my doctor is skilled with robotic surgery, even though my tumor was close to the anal verge and he warned me that he might not be able to reconnect it, he was able to after the chemo/radiation with help from my diet shrunk the tumor to basically an ulcer by the time it was time for surgery. The iliostomy was to give the colon time to heal without having to deal with waste going through it. Once I am done with the chemo and my body has had time to recover, the plan is to reverse the iliostomy and connect everything back up again.

danker
Posts: 1198
Joined: Apr 2012

Good luck with the ileostomy reversal!  I had a fistula at the ostomy site requiring about 6 more weeks with a bag.  However the fistula healed itself from the inside out!!! I've been NED ever since, 6 years ago.

chicagogirl89
Posts: 5
Joined: Sep 2016

Thanks so much for responding Ellen- it's encouraging that you've also been able to avoid the nausea.  The doctor and nurse mentioned that they would change up my meds now that they knew that was an issue for me.  My original surgeon said that there would not be enough of a clear margin with me- did your surgeon see margins as an issue?

danker
Posts: 1198
Joined: Apr 2012

Try a brat diet for a day or two to see if that helps.  Brat is bananas,rice applesauce and toast.  It is worth a try!

chicagogirl89
Posts: 5
Joined: Sep 2016

Thanks Danker- I have to admit that when I first read brat diet I gagged a bit!  Now that I read the explanation I'll give it a try.  I managed to keep down some barley soup and crackers today as well as a mandarin orange cup.

kristasplace's picture
kristasplace
Posts: 956
Joined: Oct 2007

Ginger tea, yes...and anything else ginger could help with the nausea. Lotions, a candle, or sucking on pickled ginger if you can stand it.

I got the terrible throat neuropathy, too. Thank goodness that only lasted during the time I was in treatment, but the neuropathy in other places has progressed. Some never have a problem with it again. It just depends on the person.

I'm also single pretty much since 2009. My journey started in 2007, and I was in a relationship then. It did help a lot; he drove me thirty minutes each way, every day for my radiation treatments, so he was a Godsend, for sure. When the cancer advanced, he couldn't handle it and left.

I stopped chemo in 2008 and have treated my recurrences with surgery or diet ever since, so the only thing that was hard for me to go through single, were the surgeries. Luckily I have a very supportive mother who's been there every step of the way. Are you completely alone?

I hope your birthday is a happy one! Each one we get is special. :)

Hugs,

Krista

chicagogirl89
Posts: 5
Joined: Sep 2016

Thanks so much for responding Krista- By lotions and a candle do you mean those with a ginger scent will help?  My ex (we split in 2012) has been really helpful- he kept me company after the diagnosis, drove me when I had my port put in and has been bringing me groceries, soup the last couple of days and taking out the trash and stuff but unfortunately, other then a few friends, I'm completely alone.

My mom was/is a physically and emotionally abusive narcissist who I haven't spoken to since 1999.   She used to cut and burn me as a kid so the testing,  needles and port placement were especially traumatic for me.  I never knew my dad and haven't really has any contact with any other relatives because of my mom.

It's a blessing to have found this board since I now know there are others that have walked this path and made it through.  Just not feeling isolated and alone is huge for me right now.

kristasplace's picture
kristasplace
Posts: 956
Joined: Oct 2007

Anything that smells like ginger is supposed to help with nausea. I'm lucky I didn't have a nausea problem, but it might have been all the ginger I eat!

I'm glad your ex is helping you. I know people who've done it all completely alone, and they seem to do fine (maybe not having to see the grief and worry on loved ones faces is a godsend).

You will never feel alone here! Even though I had a lot of support, there was NO one around me who understood what I was going through, and as I mentioned, seeing the worry and sadness on my loved one's faces made me feel bad all the time. It put a lot of pressure on me to do the standard treatments I didn't want to do, and it got worse when I did stop doing them.

Please use this board as much as you need to whether it's to ask a question, answer someone else's question, or just to share or vent. The board isn't super active right now, but it appears that comes and goes. I intend to check in at least every couple of days if I can.

Many hugs,

Krista

John23's picture
John23
Posts: 2140
Joined: Jan 2007

But of course you already have figured that out by now...

When you get a chance (and in the mood), do yourself a favor and fill out the "profile" section. Click on your own name and you'll go to your page that's there for your use. Anyone that wants to know what you've been through will be able to read about whatever info you want to share, without having to ask you. It makes life easier around here if you're asking for help with something; you don't have to keep typing out the story countless times.

As far as what you haven't asked... Rectal cancer can be rough. If you read enough stories here, you'll notice that the best survival rates are among those that get the damned cancer surgically removed. Having an ostomy should not be a deciding factor as far as the surgery, if the best thing to do will include ending up with an ostomy, why settle for less? I've had an Ileostomy since 2006; it's no big deal. It changes the way you do things, but there's a lot of things that can change our lives, including dying because we're too vain to do what may provide the best outcome.

For questions regarding Ostomies, I always recommend the UOAA website. There's a great bunch over there; not all that have cancer, but all that have to deal with, or have dealt with having an Ostomy.

I fought against having an ostomy, and demanded a reversal that I never got. Looking back, the ostomy was the best thing, far from the worst.

The "loneliness"; the feeling that no one understands what you're going through, is normal. No one knows all the nuances and varied emotions that one has after a diagnosis of cancer, unless they themselves have had a diagnosis of cancer. It's a complicated world we have to walk through, and even with a loved one at our side we still remain alone, not knowing which step will cause us to lose our grip, slip and fall.

Our emotions can range from despair to bitterness, striking out at those around us, and finding fault with the way they even look at us.... It's fairly normal. "They" don't know what to say or do, and we don't know either. There will be times we want to be all alone, and seconds later hate the fact we're all alone. We push people away, and get mad that they have stepped back. If they haven't been down the road themselves, they have no idea just how complex the trip is for us.

The great part about this forum (and that UOAA forum), is that you will meet others that have walked the road; those here understand what you're going through because they've gone through it. Oh, you'll find a "caregiver" here from time to time that think they know the intimate characteristics of a cancer patient, and you'll learn to put up with them. They can offer some help to other caregivers, and offer some insight to those of us that might be having trouble understanding our "caregiver", but patience is needed. It's easy to become angry...... It's less painful to be kind. And it's all a matter of acceptance. Accepting ourselves and our faults is as important as accepting all those around us that care as much as they do about us.... they simply don't know what the hell to do to make us feel better. We have to keep in mind, that we don't know how to explain what it is that we need, since we really don't know either.

Your fight against cancer and how you fight cancer, is up to you. You'll get suggestions and hear stories of what has helped someone else; how good or how bad one treatment is over another.... And you'll hear about "alternatives", good and bad. You will have to decide for yourself, what is best for you. You were gifted with a sense for survival. It is your intuition, your instincts for self preservation, not someone else's that will save you. Listen carefully to that "inner voice"; trust thyself.

There are many ways to fight cancer, some less damaging than others. To date, there is no "cure" for cancer, but there are many ways to stay alive in spite of having cancer. And no "alternative" should break your bank. If it sounds like it might, run from it. Your suffering from cancer does not stop someone from trying to empty your pockets while your suffering; some are encouraged by other's weakness and vulnerability and are more than happy to remove the weight of the cash you're carrying in your pocket.

Take some time to read other member's profile pages here, there's a lot of information that can be of help to you.

You found the right place! I wish you didn't have reason to seek it, but welcome aboard.

My best hopes and wishes for you.

John

 

Trubrit's picture
Trubrit
Posts: 4951
Joined: Jan 2013

At least here on the forum you will have the support and friends that you need during this time. 

I am so very sorry to hear of your traumatic childhood. It really defies belief. I too had a traumatic time, but at the hands of my father. I think it would be especially worse if it were a mother. Anyway, lets not go down that road. I'm sure you have moved on as much as emotions allow. 

I hope you are able to get a handle on the nausea. I too was blessed to not have to deal with it. The Zofran itself made me feel sick, but I think it was a mind thing. 

It sounds as if you are following the same schedule I did with treatment. I had nine FOLFOX treatments at the Cancer facility and the pump for 48 hours. Then a months break followed by six weeks of radiation and the pump 24/7 for six week.  

Its a trip, for sure. Not a pleasant one for many. Hard to predict what you are going to go through. Radiation for me was Hell on earth. Most people not so. 

I looke forward to getting to know you here on the forum, and helping you through your trial. 

SUE

funshine's picture
funshine
Posts: 26
Joined: Aug 2016

Happy Birthday! Your the same age as me. I was diagnosed on my 40th birthday.

Glad you found this site, everyone here will support u in some way. check out the chatroom too. Many check in there when they cant sleep. Another side effect of chemo. You might not have experienced it yet, but if you do and are lonely check it out at any hour.

Hope you get more support soon. Look forward to hearing from you soon. Take care and keep positive as posible

Linda

 

 

ellend
Posts: 87
Joined: Apr 2016

I had chemo (Xeloda pills) with radiation before surgery. The tumor was originally about the size of a walnut and close enough to the anal verge the surgeon wasn't sure there would be enough tissue to reconnect. However, by the time the 28 treatments ended, the tumor had shrunk to the point it was almost non-existent. I had also changed my diet once I was diagnosed to eating a lot of raw fruits and vegetables (which I can't really do right now with the iliostomy) and juicing, which I need to get back to. Cut out almost all junk food and processed meats also. I did have the full lower anterior resection, the tumor margin was clean as were the 19 or so lymph nodes that were removed so the surgeon was able to reconnect everything.

Ellen

danker
Posts: 1198
Joined: Apr 2012

sounds great!!!

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