my wife and i are scared

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anthony1
Posts: 5
Joined: Wed Oct 30, 2013 12:08 pm

my wife and i are scared

Postby anthony1 » Wed Oct 30, 2013 12:35 pm

my 27yr old wife was 13 weeks pregnant with our foruth child when they found a tumor the size of a plum in her lower intestine. it was classfied mildly differentiated, and since 1 out of 26 lymph nodes tested positive, its classified as stage 3. however it successfully removed it with no issues for her or the baby. follow up CT scans and bloodwork indicate no signs of cancer are present. chemo was postponed until after chemo due to the lack of research on the ffects of 5FU and oxilioplatin on developing fetus. baby Emily was induced 5 weeks early weighing in at 7 lbs!

we are having a difficult time having faith, being encouraged and knowing what the right thing to do is. my wife had an allergic reaction to the first chemo infusion(oxilioplatin). so the next option was for her to take the chemo pills. well kel (my wife) just so happened to bring emily and our other daughter claire with her to her last dr appt and that reminded the doctor to inform her that he was reading up in the chemo pill and that one issue with it is that the chemo would seep theough the pores of her skin, primarily on the hands and feet. she would have to avoid all skin contact, wear gloves with the kids and prepping meals etc. its like howare we supposed to do this?

this chemo is supposed to be preventative. her 5 year survival rate without chemo is 80%, 90-92% with chemo. and recent scans and blood work have come back clean, no indications of cancer. so we are left playing russian roullette trying todecide if its worth putting our family through this torment. kel is the primary caregiver. the kids need her healthy and so do i. shes torn up about it. flip flopping back and forth. the other options are no better, sit once a week for 6 months for 5hrs at a time? we can barely get baby sitters to get put alone for a few hours, let alone during the work day. its just insane. like we have to choose, do we have faith to do chemo or faith to not do chemo? and paradoxically, chemo can increase your risk of cancer! i keep thinking shouldnt we want to keep her immune system strong? what if she gets the flu or pneumonia while getting chemo? she could die from that just as well. i hate this and i just want it to go away. im not able to know what to do.

some
Posts: 578
Joined: Thu Jul 05, 2012 1:39 pm

Re: my wife and i are scared

Postby some » Wed Oct 30, 2013 1:12 pm

Anthony,

It is so normal to be scared. Cancer is scary. We can't tell you what to do, but to me (and I am a caregiver, not the patient), chemo is a necessity. We had a 3 & 7 yo at diagnosis and were not warned for my husband to not touch our children.

There are some parents to very young children here who have been through this and can help.

I know how hard the child care thing is, especially with 4 little ones. Do you have friends/family to lean on? What about the hospital social worker? They may have recommendations for your area.

That 10% difference in survival would mean everything in the world if you were on the short end of that statistic.

We are here for you and know how overwhelming it all is.

Best to you and your wife.

Serena
DH (age 41) diag Stage IV mets to peritoneum - July 2012 (undetectable on CT PET or MRI)
Folfox 7 & Avastin started July 2012 CEA, CA 19-9 not indicators
HIPEC surgery 1/18/13
Folfiri/Erbitux - March 2013
Lots of prayers.

LabLover
Posts: 65
Joined: Tue Sep 24, 2013 7:50 pm

Re: my wife and i are scared

Postby LabLover » Wed Oct 30, 2013 1:33 pm

It's so normal to feel scared and overwhelmed. I'm 37yo female with a 9yo and 10yo. I was diagnosed with stage 3 rectal cancer in May. Completed 5.5 weeks of chemo (oral xeloda) and radiation. Never heard of that side effect and cared for my children the entire time. I had surgery 3 weeks ago with a complete pathological response (no cancer in tumor or lymph nodes). Despite complete pathological response I'm still doing another round of chemo.

For me personally, I don't think I would feel comfortable forgoing chemo despite no evidence if cancer. However, everyone has to make their treatment decision based on what is right for them.

janklo
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Re: my wife and i are scared

Postby janklo » Wed Oct 30, 2013 1:52 pm

My daughter did the Xeloda pills and I don't recall her being told anything about them being toxic or wearing gloves. With the take home pack for the oxy chemo, the oncologist office did send us home with a "toxic clean up kit" the very first infusion that had a little trash can with a lid, some rubber gloves and some red plastic bags. They told us that was in case the pack of oxy somehow leaked, you would clean it up with that. The oncologist office did say they had a patient who was at home sleeping and his cat chewed through the tubing hooked up to the pack. It could have been toxic to the cat, but everything turned out ok. I am sure you would want to have someone present to watch your babies if your wife was on the take-home pack and sleeping.

I believe it is possible to have your oxy infused at a slower rate if you've had a reaction the first time - sometimes that helps the patient not have a reaction and infusions can continue. I agree with the others, I would personally pursue chemo in your wife's situation. Stage 3 is nothing to mess around with.
Mom to 28 yo daughter
colectomy 2/22/10, stage 3C, signet cell
7/2011 peritoneal mets
HIPEC September 2012, difficult recovery
Hospice 10/31/2012, Died 11/16/2012

Cj51
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Location: Midwest

Re: my wife and i are scared

Postby Cj51 » Wed Oct 30, 2013 2:40 pm

I had an allergic reaction to Oxi, too. The chemo in the pack is 5FU, not Oxi. If she is being offered pills, then that's Xeloda, the pill form of 5FU and she will not have a pack. I did both, and my preference was to do the Xeloda. The pack was a pain to deal with, IMO. Others feel differently. I was never warned that I shouldn't touch my kids or prepare food while on chemo, so that' s news to me. Big news, because I hosted a large Thanksgiving dinner while on chemo and prepared most of the food! My Onc knew all about it because he gave me a chemo break so I wouldn't be tired on the days leading up to it! It is true that in places where your blood vessels are close to the skin, ie hands and feet, you might have some reaction. If you see references to "HFS" or Hand and Foot Syndrome here, that's what they are talking about. I did wear gloves a lot of the time, because if I'm cooking, I am washing my hands a lot and that just made the irritation on my palms worse. Nobody ever said I should do it to protect my family. I was told that for a few days after chemo treatment, that I should flush the toilet twice after using it, and that my husband should use protection during intimacy. Other than that, no warnings to take precautions around other people.

If she is not doing Oxaliplatin due to the allergy, then it will probably be just the Xeloda pills. She'll need to go in for appointments and get her blood checked, but it will not be 5 hours in the chair, and Xeloda doesn't have as many nasty side effects as Oxaliplatin does. For a young mom, it's much more do-able, I'd think. Do you have friends, family, a church or other social group that you could call on for help with child care while she goes to her appointments? I second the recommendation to talk to the hospital social worker. Bottom line: If she does chemo now, in 5 years it very likely all be a bad memory for her and your kids will have forgotten it. If she doesn't do chemo, she might be OK, but if she ends up back in the Onc's office, will you be able to live with the fact that you didn't do all you could to prevent it? Your chance to act is now. If you don't take it, in my opinion, you are trifling with the beast, and that is not wise. I would never have taken that chance with small kids to raise. That's just my $.02, having been Stage IIIb and now NED. It's your decision to make. Either way, this forum is a valuable source of information.

Best of luck to you.

Cj
DX Stage IIIb RC, T3N1M0, April 2010, 51
6 wks Xelox/rad 6/10
resection, temp illeostomy 8/10 Complete response!
12 rounds FOLFOX for clean up 9/10, Allergic to Oxi, started Xeloda only 12/10
Ileo takedown 9/28/11
4/2020 NED

teachpdx
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Joined: Wed Jan 16, 2013 12:29 am
Location: Portland, OR

Re: my wife and i are scared

Postby teachpdx » Wed Oct 30, 2013 2:52 pm

I hope I'm not being too blunt, but when you think of childcare issues now, how would you feel if you had to handle things WITHOUT your wife? I took Xeloda and am one of the few people who has ongoing side effects. A 10% difference seems like a huge number when you have little ones. I think it may be a short term loss for a long term gain. I also didn't hear anything about not touching things/people. I suppose it does leak out because your hands and feet hurt...Best of luck with your decisions and taking care of your little ones.
4/24/12 RC T3N1M0 age 53
5/23-7/2 - 26 chemorad - Xeloda
7/16 Lynch- MSH2
8/28 LAR w/ temp ileo, CR, 0/11,M0, hysterectomy
10/13 6 cycles Xeloda - completed only 1 1/2 due to HFS
3/12/13 - reversal
8/13 NED
6/15 - HFS gone!

justin case
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Location: Katy, Texas

Re: my wife and i are scared

Postby justin case » Wed Oct 30, 2013 4:45 pm

anthony1 wrote:my 27yr old wife was 13 weeks pregnant with our foruth child when they found a tumor the size of a plum in her lower intestine. it was classfied mildly differentiated, and since 1 out of 26 lymph nodes tested positive, its classified as stage 3. however it successfully removed it with no issues for her or the baby. follow up CT scans and bloodwork indicate no signs of cancer are present. chemo was postponed until after chemo due to the lack of research on the ffects of 5FU and oxilioplatin on developing fetus. baby Emily was induced 5 weeks early weighing in at 7 lbs!

we are having a difficult time having faith, being encouraged and knowing what the right thing to do is. my wife had an allergic reaction to the first chemo infusion(oxilioplatin). so the next option was for her to take the chemo pills. well kel (my wife) just so happened to bring emily and our other daughter claire with her to her last dr appt and that reminded the doctor to inform her that he was reading up in the chemo pill and that one issue with it is that the chemo would seep theough the pores of her skin, primarily on the hands and feet. she would have to avoid all skin contact, wear gloves with the kids and prepping meals etc. its like howare we supposed to do this?

this chemo is supposed to be preventative. her 5 year survival rate without chemo is 80%, 90-92% with chemo. and recent scans and blood work have come back clean, no indications of cancer. so we are left playing russian roullette trying todecide if its worth putting our family through this torment. kel is the primary caregiver. the kids need her healthy and so do i. shes torn up about it. flip flopping back and forth. the other options are no better, sit once a week for 6 months for 5hrs at a time? we can barely get baby sitters to get put alone for a few hours, let alone during the work day. its just insane. like we have to choose, do we have faith to do chemo or faith to not do chemo? and paradoxically, chemo can increase your risk of cancer! i keep thinking shouldnt we want to keep her immune system strong? what if she gets the flu or pneumonia while getting chemo? she could die from that just as well. i hate this and i just want it to go away. im not able to know what to do.


I'll answer about the baby being 7 LBS. My 6 LBS. bundle of joy, now weighs about 250, and has arms as big as my legs. There are enough people around here stage 3, that can tell you to blow the stats and do the chemo, I did it at stage 2. As far as spending 6 hours once every month, or every two weeks, or 6hrs, on Monday, with chemo every day, for 6 weeks along with radiation, you just have to suck it up, and hope your wife will be around for the remainder of the kids life at least. Or, as you probably know, it will be your responsibility. I did do a different chemo than the pills, so perhaps someone will help you figure out the Xeloda.
7/11 diagnosed Stage 2 colon and rectal cancer
chemo/rad
lar/temp ilio
Reversal & port removal
21 round of chemo Folfox 9tx, 5fu 12 tx
Last treatment July 2012

weisssoccermom
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Location: Pacific NW

Re: my wife and i are scared

Postby weisssoccermom » Wed Oct 30, 2013 5:08 pm

I've never heard anything about the Xeloda causing issues with it 'seeping' out of the pores. Yes, there are some risks involved with ANY chemo.....personally, with children, I would much rather be doing the pills as opposed to the pump. I'm not going to say that there aren't very miniscule risks but I would wonder if the doctor is trying to advice you to do the pump instead of the pills and, perhaps (???) using some scare tactics to accomplish that??? I'm not trying to be cynical but it is not uncommon for the oncs to try to dissuade patients away from Xeloda and instead switch them to the infused 5FU. Certainly the pump and the tubing has WAY more issues for children than the pills and yes, you would have to make certain, just like with other drugs, that you keep the Xeloda away from the little ones.

I took Xeloda for the 6 weeks during chemoradiation and for another 5.5 months afterwards. There was never any issue about me making meals, folding the laundry, feeding my furbabies or in any way touching or being around my family members. Personally, I think it is ridiculous to tell a patient that you would have to glove up, etc. and not touch your children or make meals, etc. Of course there are precautions to take but I've NEVER heard of anyone being told that they couldn't touch their children or make meals, etc.
Do the Xeloda - please don't avoid the chemo over some 'theory'. If you are really worried, press the doctor for the article and read it yourself.

Let's suppose that there truly is a risk of the Xeloda affecting people around you. Is that risk smaller than the risk of a recurrence? Just saying.
Jaynee
Dx 6/22/2006 IIA rectal cancer
6 wks rad/Xeloda -finished 9/06
1st attempt transanal excision 11/06
11/17/06 XELOX 1 cycle
5 months Xeloda only Dec '06 - April '07
10+ blood clots, 1 DVT 1/07
transanal excision 4/20/07 path-NO CANCER CELLS!
NED now and forever!
Perform random acts of kindness

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kellywin
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Location: Northern CA

Re: my wife and i are scared

Postby kellywin » Wed Oct 30, 2013 5:25 pm

anthony1 wrote: that reminded the doctor to inform her that he was reading up in the chemo pill and that one issue with it is that the chemo would seep theough the pores of her skin, primarily on the hands and feet. she would have to avoid all skin contact, wear gloves with the kids and prepping meals etc. its like howare we supposed to do this?


Anthony - just to chime in here. First to congratulate you and your wife Kel with baby Emily (my name is Kelly & my daughter is Emily - although she's 8 :D ). I know how scary this is, trust me, I've had almost a year to digest this, it takes time. I just wanted to jump in on this part about the Xeloda with the not touching the kids. I have no idea where this might be said, but I can't imagine that it's true. I could find no documentation about this at all. And there are plenty of people on here that have small kids. The pills are just as effective as he 5fu pump and much much easier. As others have said, I would take the pills in a heartbeat. I want any extra insurance possible that I will be here as long as possible for my daughter. There are some side effects from Xeloda, but being alive greatly outweighs any side effects in my opinion. For me Xeloda was a breeze. No issues, not hand/foot problems, nothing. I have some neuropothy (from the Oxaliplatin) and I suppose some of the issues that I have could be from Xeloda as well, but if I could rewind knowing what I do now I'd make the same choice, chemo.

Good luck to you and your wife with whatever decisions you make.
Kelly, mom 14 yo girl
Dx 11/15/12 Rectal Cancer @ age 40
Stage IIIC
5.5 weeks Xeloda & Radiation - complete 2/5/13
Colectomy 3/12/13, 7 of 14 nodes positive - no ileo
4/24/13-8/20/13 - 5 rounds Xelox, 1 Xeloda only

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kellywin
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Location: Northern CA

Re: my wife and i are scared

Postby kellywin » Wed Oct 30, 2013 5:27 pm

weisssoccermom wrote:I've never heard anything about the Xeloda causing issues with it 'seeping' out of the pores. Yes, there are some risks involved with ANY chemo.....personally, with children, I would much rather be doing the pills as opposed to the pump. I'm not going to say that there aren't very miniscule risks but I would wonder if the doctor is trying to advice you to do the pump instead of the pills and, perhaps (???) using some scare tactics to accomplish that??? I'm not trying to be cynical but it is not uncommon for the oncs to try to dissuade patients away from Xeloda and instead switch them to the infused 5FU. Certainly the pump and the tubing has WAY more issues for children than the pills and yes, you would have to make certain, just like with other drugs, that you keep the Xeloda away from the little ones.

I took Xeloda for the 6 weeks during chemoradiation and for another 5.5 months afterwards. There was never any issue about me making meals, folding the laundry, feeding my furbabies or in any way touching or being around my family members. Personally, I think it is ridiculous to tell a patient that you would have to glove up, etc. and not touch your children or make meals, etc. Of course there are precautions to take but I've NEVER heard of anyone being told that they couldn't touch their children or make meals, etc.
Do the Xeloda - please don't avoid the chemo over some 'theory'. If you are really worried, press the doctor for the article and read it yourself.

Let's suppose that there truly is a risk of the Xeloda affecting people around you. Is that risk smaller than the risk of a recurrence? Just saying.
Jaynee


Ok, what Jaynee said above. Agree wholheartedly.
Kelly, mom 14 yo girl
Dx 11/15/12 Rectal Cancer @ age 40
Stage IIIC
5.5 weeks Xeloda & Radiation - complete 2/5/13
Colectomy 3/12/13, 7 of 14 nodes positive - no ileo
4/24/13-8/20/13 - 5 rounds Xelox, 1 Xeloda only

dianne052506
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Location: North Carolina

Re: my wife and i are scared

Postby dianne052506 » Wed Oct 30, 2013 5:39 pm

anthony1,
First, congratulations to you and your wife on the baby. I am so sorry you're having to deal with cancer when you should be walking on air with happiness.
I am enclosing a link to the Xeloda literature. I am not a doctor, and have no medical expertise. I took Xeloda for 4 years and thought I was moderately familiar with it. Just now, I read through the Xeloda webpage, as well as the 20-page PDF you get from the link at the bottom, "Prescribing Information for Additional Important Safety Information." The literature says that a women should not get pregnant while on Xeloda. It also says that the drug is excreted in breast milk, and therefore, a mother should not nurse a baby. It says nothing about avoiding skin contact between a patient on Xeloda and infants and children.

http://www.xeloda.com/
There is a side effect that can occur with Xeloda as well as some other chemotherapy drugs called Palmar-Plantar Erythrodysesthesia or Hand-Foot Syndrome.
http://chemocare.com/chemotherapy/side-effects/handfoot-syndrome.aspx#.UnGG_UnD_wo
This is also described on the Xeloda website. I would assume this is what your doctor is referencing. If the skin on my hands were broken and raw, I would probably avoid touching a baby, but otherwise I can honestly say it wouldn't have occurred to me, particularly since the website mentions nursing, but does not say anything about avoiding handling an infant. I would strongly suggest calling Genentech and discussing this advice from the oncologist. Genentech has a nurse on call 24/7 at 877.987.2487 for patients with questions.
Best wishes,
Dianne
May 06 Stage IV CC: liver,ovarian mets
Oct 07 inoperable lung mets
Feb 08 - Apr'12 chemo
allergic to oxaliplatin, irinotecan
Aug '12-Feb'14 Genentech PD-L1/Avastin trial
Mar '14 -radiation to largest lung nodule
still recovering; looking at trials again

debzak
Posts: 424
Joined: Tue Oct 02, 2012 2:58 pm

Re: my wife and i are scared

Postby debzak » Wed Oct 30, 2013 8:36 pm

Hi. Sorry you have to even think about this stuff. I was diagnosed stage III 20 months ago did regular chemo, chemo edition with xeloda and then took more xeloda because there were cancer cells found in my soft tissues even though my lymph nodes were clean.

About one month after I finished the final xeloda I had a ct which showed the cancer had speed to my liver. It spread while I too, xeloda. Not to scare you or sound mean but there are no guarantees with this stupid disease. I would take any precaution I could. In fact I did. My local hospital recommended the extra xeloda. It is not part of any standard treatment plan to to take xeloda after the surgery. I had already done my 6 months of chemo, I was supposed to,be cancer free and done with my treatment. Yet here I am on chemo again hoping to get the tumors small enough for a liver resection.

I have never heard of the no,touching thing. My kids are 13 and 15. I am their primary caretaker. My oncologist did not warn me of anything except not to,eat off buffets or salad bars when on chemo.

I wish you luck,with your decision and treatment. Welcome to,the club.

Debbi
2/27/12 dx rectal cancer (stage III)
3/6/12 44th B-day
3/19/12 Oxi & 5-FU (8 rounds)
7/9/12 chemo-rad
11/5/12 LAR surgery temp ileo
1/20/13 4 rounds Xeloda
5/13 multiple liver mets
6/4/13 HAI pump at Sloan
KRAS wild & BRAF mutation found :(

Val*pal
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Facebook Username: Valerie Barkus Kantner
Location: Metro Detroit, Michigan

Re: my wife and i are scared

Postby Val*pal » Wed Oct 30, 2013 8:47 pm

What a great family you have! Four little ones!
Just a thought, but if your wife decides to do the chemo, perhaps you can reach out to a church or community group in the area that can create a circle of care for your little ones. It may not be a perfect solution, but it might allow your dear wife to get the rest she'll need at least part of the time. There's also an online group called Benevolent.net that can provide small amounts (nothing over $700, I believe) of donations that could serve as a small childcare fund for you and your wife.
In my humble and nonmedical degree opinion, I think your wife should opt for chemo. It's just too dang easy for colon cancer to do crazy things. I had a minor cancer scare (thyroid) when my three children were ages 6, 5, and 3 so I can appreciate the monumental task of finding good childcare for so many little ones and the desire to do everything in a mother's power to be around for the kids.
Good luck. It just isn't fair that so many young men and women have to deal with cancer.
DH dx'ed May '11, age 62
Jul '11: resection Stage IV
10/11: 6 mo Folfox
8/12:thyr canc, surg/tx
2/13: peri mets
2/13: Firi/Avas
6/13: Ok
8/13: break
10/13: Lung, peri, mets
10/13: Firi/Erb
1/14: Erb Fail; spread
5/14: Tx stopped
6/20/14: At rest

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horizon
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Re: my wife and i are scared

Postby horizon » Wed Oct 30, 2013 9:12 pm

Let me also chime in here and say that I've never heard of anyone saying that while taking Xeloda you can't touch people, prepare their food, etc. The instructions that came with mine said that *I* should wear gloves when I open the packets to consume the pills, but that was about it.
I'm just a dude who still can't believe he had a resection and went through chemo (currently 9 years NED). Is this real life?

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Rob in PA
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Location: Pennsylvania

Re: my wife and i are scared

Postby Rob in PA » Wed Oct 30, 2013 10:54 pm

Congratulation on baby Emily!

You have heard from several cancer patients regarding whether a 10% betterment is worth the risk of chemo. I second what the majority has said.

YOU have a huge responsibility ahead of you in helping with kel as primary care giver while she deals with this. Please don't make a decision based on whether or not the two of you can care for your two children during another six months of chemo. You will find the strength.

My best...and again,congratulation

Rob
dx 11/07 crc IIIb @ 39
Xelox/Rad/ temp colostomy
LAR/J-pouch/ temp ileo
Folfox-8
Failed reversal
2/09 liver mets; liver resect/ileo reversal
Folfiri/Avastin - 12
2/11 5 lung mets
Folfiri/Avastin 2011
SBRT 3/12
Lung met 5/13/ said NO to more chemo
SBRT 8/13
2 lung mets 5/14, VATS 8/14, NED


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