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All TopicsForum: ILC (Invasive Lobular Carcinoma) → Topic: How sick did you get?

Topic: How sick did you get?

Forum: ILC (Invasive Lobular Carcinoma) — Just diagnosed, in treatment, or finished treatment for ILC.

Posted on: Apr 15, 2008 03:13PM

MamaShift wrote:

Hello everyone,

My mom (66) is starting chemo next week.  She has ILC, 1 lymph node positive, hormone positive.  Her tumor was tiny.  The lumpectomy was successful -- all clear there.  She'll also be taking one of the A medications (we talk on the phone and sometimes it's hard because she has some learning disabilities).

I'm very far away from her now.  I was scheduled for a visit in July but I really want to leave sooner.  She lives alone and I really want to be there to take care of her.

I'm wondering just how sick will all this make her?  Will there be a lot of pain, too?  I really want to help her, but I'm somewhat concerned about exposing my girls (2 1/2 & 8) to a grandma who is very, very ill.  In bed, vomiting seems not too bad (I'm trying hard to explain my feeling here, so I hope I don't sound strange) but moaning in extreme pain and visibly very ill worry me a little bit.  I doubt very much I would stay away, but I might make arrangements for my daughters to be out of the house most of the time or something.

Thank you for any personal stories or suggestions or advice.  You women rock! 

What do you all think? 

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Posts 1 - 9 (9 total)

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Apr 15, 2008 06:08PM nash wrote:

Sounds like your mom will be on Adriamycin, probably with Cytoxan. The shorthand for that is AC. Do you know how many rounds she's getting? AC is usually x4 if not combined with another chemo. With a taxane or with 5-fu, it's usually x6.

Everyone reacts differently to the chemo, so it's hard to say how your mom will be. The vomiting should be controlled with meds. With AC, the hardest days are usually days 3 and 4 of the cycle (infusion day is day 1), and for me, I basically just curled up in a ball those days and didn't move. Didn't have pain so much as just really felt like crap, and any exertion made it worse.

I'd suggest reading through the chemo board, too--you'll get all sorts of perspectives there.

My recently deceased Stage IV bc mom was on a variety of chemos for 5 1/2 years. My kids are 6 and 9, and my mom lived with us for the last 3 1/2 years. Between my treatment and my mom's, they have been exposed to all sorts of things. They have been through the deaths of three grandparents in seven years, all cancer, plus of course Mommy's got cancer. Some of this you just can't shield them from. But I understand your concern, and I won't lie--my kids were scared to see me feeling sick from chemo, especially my older one. She really hated it when "chemo weekend" rolled around. But we all got through it, and they're fine. In some ways it's better for them to see the reality of things rather to imagine in their minds what's going on. But you have to decide what works for your family.

You're a good daughter. I know how hard this is, especially having been both the caregiver and the patient. I actually found it much more difficult emotionally being the caregiver. Hugs to both of you.

Dx June 2007, age 38, Stage IIa 2.7 cm pleomorphic ILC, ER+/PR+ HER2-, CAFx6, rads, Tamox, Zometa, Oncotype 18

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Apr 18, 2008 01:03PM, edited Apr 18, 2008 01:04PM by trigeek

Hey Mama.

I'm wondering just how sick will all this make her? 

That really depends on how strong she is going into this, and how she takes care of herself during treatment( staying hydrated.. and stuff) I heard people who even work in their off-chemo weeks also some get hospitalized with serious side effects

Will there be a lot of pain, too? 

There was no pain for me on AC, however Taxol did a trick on my gi and had cramps , some people have severe joint pain on taxol. So do not assume that your mom will be moaning and groaning and puking all over the place she might be slightly down.

 I really want to help her, but I'm somewhat concerned about exposing my girls (2 1/2 & 8) to a grandma who is very, very ill. 

This really depends on how the grandma will handle this situation, I think that the 2.5 year old might not understand what is going on and the 8 year old will be able to deal with it if explained that grandmother is sick just as they are with a really really bad flu.

However, there is another important aspect. During chemo the immune system will be really compromised ( unless she is getting any kind of Neulesta or Neupagen shots ) so I personally was not 'happy' to share the same environment with kids, who could be 'germ incubators' -- especially day care kids.

On a side note : Your mother might enjoy the company if it does not tire her. I found that kids with their naivity, freshen up the environment and distract me -- ( if they are nice of course !!!)

This of course depends on how their relations are now.

Bilateral MX with Recon, DD AC/Taxol Rads,Tamoxifen, oopherectomy, femara, zometa "Live Deliberately !"http://www.aylin-yeahright.blogspot.com/

Dx 8/3/2007, ILC, 2cm, Stage II, Grade 2, 2/6 nodes, ER+/PR+, HER2-
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Apr 18, 2008 04:29PM Laurita wrote:

I had 6 tx of FEC (like AC with 5Fu). 

Because your mom was hormone positive they may give her a taxane insead of the 5fu, so maybe AC and then T.

Unless your mom has serious emotional/coping issues, she will not be writhing/moaning with pain.  As mentioned by Nash, she will probably feel quite lousy during the first few days after tx.  I, too, found that days 3 and 4 were the worst.  I would say it was like having a bad hangover and morning sickness (all day), combined.  I kept fluids up (lemonade tasted best, cut through yucky taste in mouth) and for those bad days I ate whatever my body wanted/tolerated best, which for me was high carb/fat stuff I don't typically eat (Macdonalds food, deep dish pizza, etc Embarassed).  The rest of the time I kept to my usual lean protein high vegetable/salad diet and I was ok. 

Taxotere (which I didn't have) can bring some other side effects (joint pain etc) and the doctors will suggest pain meds for those.

Also make sure she is vigilant/aware of all things she can do to avoid constipation, as this is a BIG complaint with chemo.  Lots of fluids, fruits, stool softeners (which I never took, but I did take a good quality probiotic acidophilus daily, which really helped keep me regular) and ensuring there is a good amount of fiber in the diet, can all help with this.

Just love and support and encourage your mom, and be there for her as much as you can, even if just on the telphone hearing about her side effects.  Would she benefit from a support group?  Would she participate if one were available?  For most of us I think this forum is most helpful for that - knowing we are not alone, knowing there are others going through the same thing, knowing that we will get through it, and knowing we can whine or vent or whatever we need to do to get through it all.

Hugs and best of luck!

Laura

Dx 9/6/2007, IDC, 3cm, Stage II, Grade 3, Lumpectomy 10/04/07, 0/2 nodes, ER-/PR-, HER2-

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Apr 18, 2008 09:18PM paige-allyson wrote:

It's such an individual thing. I had AC/T and was not sick at all. The anti-nausea drugs worked great. I was tired- more so as the treatments wore on.I am a little confused re: your mom. She had a lumpectomy and will be having chemo. Is she ill with something else besides the breast cancer diagnosis. I would not expect someone going through chemo to be very ill and in bed unless there is some other factor involved. Maybe ask your mom what she has been told to expect and ask her what would be helpful to her?

Dx 5/18/2007, ILC, 3cm, Stage IIIa, Grade 2, 6/17 nodes, ER+/PR+, HER2-
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Jan 9, 2009 04:30PM VBK1944 wrote:

Hi, On AC, was it given IV one day with 2 or 3 weeks off? When did you feel the worst? When (if) did you loose your hair?

Vb

Dx 12/1/2008, ILC, 2cm, Stage IIb, Grade 2, 3/12 nodes, ER+/PR-, HER2-
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Jan 9, 2009 05:10PM nash wrote:

I had CAF (AC with 5-FU) every 3 weeks. For me, the worst days of the chemo cycle were days 3 and 4 (day 1 is the infusion day). By day 5, I was functional again. Days 3 and 4 I sat in a recliner and didn't move. My hair started falling out about 2 1/2 weeks after the first infusion.

Dx June 2007, age 38, Stage IIa 2.7 cm pleomorphic ILC, ER+/PR+ HER2-, CAFx6, rads, Tamox, Zometa, Oncotype 18

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Feb 1, 2009 08:03AM harvey wrote:

I had AC X 6 lost my taste for coffee and found that it really kicked it about day 5.

I had a lovely chemo nurse hand pump the stuff in - she gave smiles,chat, orange juice and sweets as neccessary. For some reason you get a horrid taste in your mouth while its going in.

I had 3 weeks between treetments and by the second one had no hair left. Stranges side affect was my hair hurt for a few days before fell out.

I felt sick alot  -had loads of problems with my digestive tract - a bit like IBS. I also got very tired and felt weak as the treatments went on - however I was not in pain and even managed to go camping for  4 days with mydaughter and grandchildren.

I couldnt work because the shifts and the client group - I wasnt be able to lift any one up from the floor.

I hope the doctor has been in to see your mother and has been able to help her.

Best wishes Harvey

If the glass is only half full - get a smaller glass. Now your glass is full again.

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Feb 1, 2009 11:07AM Roya wrote:

MammaShift, I pm'd you

Believe!

Dx 5/2008, IDC, 2cm, Stage II, Grade 3, 0/5 nodes, ER-/PR-, HER2-
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Feb 1, 2009 11:36AM, edited Feb 1, 2009 10:52PM by jenni__ca

I had A (adriamycin) every two weeks (times 4) then taxol every two weeks (times 4) then cytoxan every two weeks (times 4) ... I had no nausea at all, I had minor bone pain a couple of days during the two months of taxol ... I got increasingly tired and a bit unsteady on my feet - nothing that affected me around the house or yard but when we did our 1-2 mile walk each night my husband held my hand as a precaution ....

on adriamycin watch out for constipation and if you live in sunny parts I found the sun made my skin itch and my hair came out about week 4 or so .... and it comes out FAST ... don't make the mistake I made and try to wash it out in the shower(what a mess!!!) ... a pre-cut to very short hair prior to chemo helps ... my insurance paid for a wig which I rarely wore (too hot) so I found scarves at Target etc, check www.headcovers.com for ideas, and a sleeping cap is nice cuz that bare head can get cold brrrrr

on taxol I had the bone pain only 2 days during the two months but I ate everything in sight because the decadron they give you along with it can make you crave food and she may have a couple of days after where she gets a "buzz" I was a housecleaning maniac .... hummm might have to try some of that again Wink

on cytoxan I even started growing back my hair ....

my onc gave me the choice of doing chemo in 3 stages as a bit easier to tolerate but at the penalty of course of taking an extra couple of months

on all chemos you should drink water .... drink and pee is the motto .... not just on chemo day but every day during the few months of chemo ... ask your onc nurse how much

for most of the side effects (IF you get them) there are treatments available - if you get nauseated to the point of throwing up ask your onc for different anti-nausea meds as some work better for some people than others ...

best of luck and for me the scariest part of the chemo thing was the unknown ...

I know some who have worked all thru chemo and others who have had a rough time ... everyone is different ... it is the old adage "hope for the best and prepare for the worst"

ILC, multifocal, 7+++cm, ER+, PR-, HER2-, 1/4 nodes, stage 3A ... 9.5 years !!!!!! and counting....