Want to hear from ILC with positive nodes.

Rhonda1966

Hey Robin,

Sorry you "fit in", but I'm sure you will do well. I think the chemo is the worst part, but it is surely worth it. The expanders -------------- well, I'm still pretty numb and I've had them since May 2007. I am seeing the PS on Thursday to see about my exchange. YAY!!!!!!!!!!!!! My PS made me wait a year after finishing radiation. I had an ooph too and it wasn't bad at all. Good luck with everything and hang in there!

Rhonda

paige-allyson

Judy-Just joining the "roll call" of women with node positive ILC. My signature line speaks for itself.

Linda Lou- Thank you for sharing re: your treatment with Zometa. I have osteopenia and there was some discussion about possible treatment. Sounds like I might want to pursue this more proactively.

trigeek

dx 07/07, 2.5 cm tumor, 2/6 sentinel nodes +.. did not get the axillary node dissection chose to get rads instead.

DD AC+Taxol, first on tamox.. got oopherec/hysterectomy.. went on Arimidex, switching to Femara due to se's. Have osteopenia got my first semi annual zometa cocktail monday.. it sucked.. shivered ran a fever for 24 hours, then voila all was clear.

nash

Trigeek--I have my first infusion of Zometa in two weeks, and I'm trying to pretend like it's not going to affect me at all. I'm sorry to hear that you had such a sucky reaction to it, for your sake, plus now I'm wondering if I'll be OK to drive home an hour on the freeway afterwards. How soon after the infusion did you feel sick?

marshakb

Hey Nash,

Had my first Zometa on Tuesday morning and look out!  I hadn't read about the SE of the first one but by that evening I had flu like symptoms.  I ached everywhere,  headache,chilled to the bone, I could NOT get warm and seemed to be running a low grade fever.  Woke up the next morning much improved and by mid morning was OK.  You'll be fine to drive home, I felt OK during, didn't hit me until the evening. 

nash

Thanks for the heads up, Marsha. My infusion is at 1 pm, so it sounds like maybe I'll feel it by late evening/nighttime? That would be OK--I just wanted to make sure I could get myself home via freeway and get over to my kids' school to pick them up, and it sounds like that won't be a problem.

Did you have your appointment with the med onc this week? If so, how'd it go? 

robinri

Well then I wont look for my numbness in the expander / chest area to subside soon then. HA, I have only had them since Dec 3rd!

I might post a question of those who have already had the exchange if they are still numb with the "real" implants...chest feels weird, Hard to get used to.. I know I know small price to pay and you are right but I just wonder long term what it will feel like. (to me!)

robin

LindaLou53

Trigeek, Nash and Marshakb, I just had my 8th Zometa infusion this past Tuesday.  I no longer have any adverse side effects following infusion but let me pass on a few tips I have learned in the process.  With my first 2 infusions (I was getting Zometa every 3 months for the first 18 months), I did experience some slight feverishness and body aches similar to having the flu.  It lasted 1-2 days for me, starting in about 12-24 hours following the infusion. Even at its worst, I would take a couple motrin, drink lots of water and go to bed early and soon felt much better.

I have been told that for many women the first infusion is the worst, as your body aclimates to the Zometa the symptoms become less severe or even non-existent with subsequent infusions.  I have heard reports of a few women, who already suffer from Fibromyalgia, having a particularly difficult time with side effects though.

Just a couple tips from my experience you might want to try for yourself.

1.  Start drinking water the day before your infusion and take a bottle with you to drink during the infusion.

2.  I take Ibuprofen 400mg prophylactically before the infusion and then 6 hours later.  I would continue to take a pain reliever the next couple of days if needed.

3.  I have found that with a slower infusion rate and additional fluids to dilute the concentration of the Zometa, I no longer have any side effects. When the nurse hangs your Zometa it generally comes as 4mg Zometa mixed in a 50 or 100cc bag of fluid which they infuse in about 15 minutes.  Request that they also hang a 250cc bag of NS to run concurrently with the Zometa and that they slow down the infusion rate so it takes at least 30 minutes to complete the infusion.  Once the Zometa bag is infused it is up to you if you want to stay for the remainder of the 250cc bag of NS if there is any left. 

Generally, just make sure you are well hydrated both before and after the infusion, slow the infusion down to at least 30 minutes with additional fluids if possible, and take anti-inflammatories prophylactically to ward off any aches and pains.

I hope you all have great success with your infusions.  I believe Zometa to be a very significant treatment for decreasing our chances of having a recurrence or development of distant mets. My onc says she will stop my infusions this July after I have my 9th infusion.  That will be 3 years of Zometa and so far none of the clinical trials indicate a need to go longer than that.  Plus they are trying to balance out the potential risk of Osteonecrosis of the Jaw. 

Remember if you are taking Zometa to do good daily dental/oral care, get regular cleanings and checkups from your dentist, and avoid any major dental repair or bone surgery while on Zometa.  Given that the half-life is so long for Zometa I suspect I will try to put a few years between when I stop Zometa and before I do any major dental procedures.

lexislove

LindaLou?

When you say half life regarding Zometa, what does that exactly mean?

sue_blue

dx 8/29/07. two tumors 3.0cm and 1.5 cm; not sure if they were one and the same due to the lumpectomy done by a general surgeon in a smaller hospital. Had 3/11 lymph nodes plus a 4th with micromets.

DD AC + taxol, 33 rounds of rads to 6 fields, tamoxifen for 8 months. The tamox hasn't been too bad, except for the sleeping issues.

It's amazing when I think that it has been 18 months since dx. 

nosurrender

Linda Lou, thanks for posting this.

I get my second Zometa next week and I did have bad aches the first time six month ago.

Oh- since this is  a thread asking about nodes-

I had 4+ nodes plus extra nodal extension and a 2.5 cm tumor.

PeggyDixon

Hi - just wondering why some of you are taking Zometa?

 I had 12/28 positive nodes.

nash

Yes, thank you Linda--the info was extremely helpful. I appreciate it.

lexislove

Hi Peggy,

Google Zometa and Breast Cancer for detailed explaination. Studies have shown that it may reduce metastatic recurrence in ER+ woman with early stages of BC by about 35%.

LindaLou53

Lexislove here is a definition for elimination half-life that I found on About.com:

 ELIMINATION HALF-LIFE:

The elimination half life of a medication refers to the time necessary for the drug to be reduced to half of its original level in the body through various bodily processes. The longer the half life, the longer it will take the drug to be purged from the body. This may be especially important if a medication needs to be discontinued due to side effects or for certain changes in medication regimens. 

Some drugs have a very short half-life of just a few minutes or seconds ie. a short acting anesthetic.  Other drugs can have a very long half-life of many days, months or years where there is still an effect on the body.  Zometa is one of those drugs that has an extremely long half-life which implies there is still a protective benefit many years after stopping the infusions.  It also means, however, that there may still be risk of the ONJ side effect for many years after stopping infusions.

It is believed that Zometa may inhibit or prevent the spread of metastatic cancer cells to bone because the Zometa blocks the bone receptor sites so that those cancer cells cannot take hold. Zometa actually makes the bone stronger, increases density and helps to prevent the fractures and side effects of osteoporosis.  The downside to that effect is that the Zometa also blocks the bone receptor sites from being able to utilize the normal bone osteoblasts which are used in the healing process anytime there is a bone injury. Bone is a living, growing organism and if its ability to repair itself is altered there can be negative effects. 

So while the Zometa causes our bone density to improve which helps prevent the fractures of osteoporosis and it may well prevent the spread of cancer to our bones, it also interferes with the natural bone healing process which may in rare cases result in a non-healing jaw or bone death in the jaw following invasive dental procedures.

For this reason, the use of Zometa in early stage ER+ breast cancers is being trialed at a 4mg dose every 6 months for 3 years for a total of 6 doses.  The incidence of ONJ (Osteonecrosis of the Jaw) seems to be directly related to the frequency of doses and the length of time receiving doses.  Zometa has long been used in the treatment of Stage IV metastatic bone cancer in which women received infusions monthly for years.  The incidence of ONJ seems to be higher in this group.  Hopefully, the revised schedule currently being recommended will reduce the risk of ONJ which is a relatively small risk to begin with.

marshakb

Thank you so much Linda for the heads up.  So just like doing chemo, water, water, water.

Nash, thanks for remembering and asking.  We have decided (med nd rad onc) to do Femara and Zometa along with rads to the most severe of my bone mets.  Rescan in 12 weeks to see about the liver and if need be start a chemo then.  Hoping the Femara doesn't fail me as the tamoxifen did!

nash

Marsha, thanks for the update. I'm so glad you've got a plan in place, and it sounds like a good one. I will have all my fingers and toes crossed that the Femara does the job.

lexislove

Thanks LindaLou!

Now I get it

nosurrender

I have a friend who I was diagnosed with the first time, back in 2001. She had lobular and I was triple neg, ductal back then.

A year and a half ago she got mets to her bones, liver and part of her intestine. She had surgery to remove the affected part of the intestine and then her onc put her on Femara and Zometa and she has been Stable since.

That is the one "good" thing about lobular- the AIs are a really good weapon.

She had been on Tamox too before her mets were found.

sandogger

Judy,

One of my biopsies showed positive nodes, but they did not tell me how many, since I have not had surgery yet.

I answered one of your other posts about the chemo I am having prior to any surgery.  The doctor said my nodes felt normal on my last visit.

There does not seem to be any rhyme or reason with ILC. The outcome after treatment is about the same as for Ductal cancer and my doctor said that the treatment plan for me would have been the same had it been IDC.

Good Luck. 

IllinoisNancy

nosurrender,

Did your friend have ILC in her nodes when she was dx?  How old was she and how did she know that it spread?  Were their symptoms?  Thanks much for the info.

Nancy

CrystalLocket

I have just had my double mastectomy with immediate reconstruction Wedsday and I am waiting for the results from pathology.  They did a sentinal node, but the nodes proved positive so they moved on to an axillary.  I am waiting to hear how many nodes are affected and my treatment plan.  Did your doctors tell you immediately how many were positive?

Sitting on pins and needles.

sue_blue

Crystal, I heard after they had done the pathology on the lymph node dissection. It's better for you that it is on the right, the radiation is less likely to involve your heart. Best of luck to you in all of your treatments. I'm so sorry you are on "pins and needles", I remember all too well being there. It does eventually get better. 

paige-allyson

Crystal-

I think I had to wait about a week to get the full report. I was just told right after the surgery that there were positive nodes. The waiting was the worst for me, but as Susan said it does get better.

sandogger

Rhona or all women who had Taxol after A/C and you also had ovaries removed.

I am very interested in the oomph as my mom had Ovarian Cancer and did not make it.  My docs have not mentioned this procedure to me thus far.  I am still having chemo prior to any surgery.

what was that like for you?

Rhonda1966

Sandogger,

My docs did not mention the ooph to me either. I had done research on my own and felt like the procedure would be beneficial since my BC was hormone receptor positive. I asked my doctors about it and they told me that would be my "maximum treatment". So I asked, "What are we waiting for?" They agreed that it would be beneficial, so I scheduled surgery. I just wanted to know in my mind that I have done everything I could possibly do to attack this horrible disease. I want to be here for my children, with or without boobs! LOL!

Rhonda

Dx 4/24/2007, ILC, 4.5cm, 8/23 nodes, ER+PR+, HER2-

anellieg

I am reading all this with interest and awe.  I will get my port a cath Wednesday and start Chemo the same day.  The Chemo, I think I can manage.  I got the diagnosis of Stage III ILC Jan 2 that is also in the pectoral muscle, to what degree, I dont know. I am active, a swimmer and all that.  I am very worried about chest muscle removal after chemo and radiation.  Will chemo reduce the amount of muscle cancer involvement? Will all the muscle need to be removed?  Will I be able to move my arm after surgery?  The docs are not diuscussing this with me now and have given no positive indication of skin conservation or implants possible.  Hopefully, I will get answers soon

nash

Hi, anellieg--welcome to the boards.

I had pectoralis muscle involvement also. The surgeon was able to get a clean margin, but I don't know exactly how much muscle she took out. I'm also athletic, and I haven't noticed any difference or had any pain. But again, I don't know exactly how much muscle was removed.

The neoadjuvant chemo you're getting should shrink the amount of muscle involvement, and I wouldn't think they'd have to take the whole muscle out unless the cancer went all the way through to the chest wall.

Did they stage you IIIc off of the pectoralis involvement or off of tumor size/lymph node involvement? I ask b/c they were originally going to stage me IIIC b/c of the muscle, but then downgraded it to IIb b/c there wasn't true chest wall involvement.

anellieg

Thanks for the reply.  As for now, it is unknown if the lymph nodes are involved or not.  The first MRI after  a mammo and biopsy showed chest muscle involvement but I was not told how much or if it was in the chest wall. I am not sure anyone knows yet.  I was told to expect a radical after Chemo and radiation.  The cy scan showed nothing else involved.  Had a second MRI guided biopsy on the opposit breast and haven't heard about that result yet.  I go for a bone scan Monday, port a cath Wednesday and start Chemo the same day.  I guess I am jumping the gun trying to chart my course.  I expect that is normal behavior!

I have heard of muscle scraping to retain some functioning.  When hit gets closer, I will get a second opinion on surgery.   That isn't in the plans until summer anyway.

anellieg

CT scan in last post.  I am getting my LONG hair cut tomorrow to donate for someone who will use a wig.