Team ILC Warriors
Comments
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I also saw a counselor during my treatment-- I just wanted to get it all out while I was going through it--and that really worked for me. I may have said this already, but I was able to work--- not everyone can and you might have to wait to see what your reaction to chemo is...but I found it very helpful---- my kids were younger and they needed me to be present, so I had no real choice.... which is not to say that I did not fall apart periodically--I did.
I want you to know that I am close to 5 years out and I almost NEVER think about this. I sleep well because I did everything I could during the treatment phase to hopefully eradicate this forever..... You will get there--- be kind to yourself during treatment (I shopped alot!!!)0 -
ditto the shopping0 -
Thank you, Janetanned and momand2kids, for sharing your survivor stories with us, we really need that during this very difficult time in all of our lives and thank you for giving me hope.
Shary0 -
smlvr, remember this is all temporary. side effects, feeling sad, everything. feel what you need to feel and don't beat yourself up for being sad and blue. Your hair will grow back more quickly than you think and you will feel good again. It may be a new normal for you as it is for all of us but you will find joy in your life again. I promise. Keep us posted. // hugs0 -
I met with MO this week and he says I need 4 rounds of AC every other week followed by Taxol 4 rounds every other week. Then I will need radiation followed by hormone therapy. We don't know which since I am not in menopause yet and he can't guarantee that chemo will put me in permanent menopause ( I am 50). Do any of you have experiences with these treatments and their side effects? Does ILC respond to this chemo? I have read sometimes ILC is less responsive. Any recommendations as to how to keep side effects at bay? Got my port in yesterday and bandages removed. Instill have 2 drains and I can say that I had more discomfort today than any other since BMX with the drains hanging out and the new port. Also, my chest is numb in places. Is that normal? Too much is happening all at once!0 -
i had this exact chemo and i was 44 regular as clock before starting it, got one period once started and havent had any since.. its been 8 mnths0 -
SML, I had similar chemo, although they gave me fluorouracil as well, along with the AC (and epirubicin instead of the adriamycin) - a combo known as FEC. I had 4 rounds of that before surgery, and then I had 4 rounds of taxotere, which is similar to taxol, after the surgery.
My ILC responded beautifully, just not completely. When they say that lobular doesn't respond "as well" as IDC to chemo, they really just mean that you are less likely with lobular to have a complete response (if neo-adjuvant like mine was), but a complete respone is not a given with IDC either.
My large tumor (we never got straight just how big, but somewhere between 5 and 8cm) was down to a few millimeters by surgery time. So the chemo definitely did something, it just didn't get rid of all the cancer, which is why I also had rads and am taking femara.
Side effects vary wildly from person to person. I had a relatively easy time of it. The most common SE with the AC is nausea. My onc gave me emend during the infusion, and then she had me on a strict schedule of 3-4 different anti-puke meds for the 3 days after the chemo, including more emend. The idea was that I took the meds regardless, no waiting around until I felt bad. For me that worked. The anti-emetics can give you a headache and constipation, but it still beats puking.
For intestinal issues, like constipation from the meds etc, I took large doses of probiotics all the way through. It worked very well and also helped keep the thrush from getting serious.
The other thing I did was to treat food as medicine, in the sense that I made sure to eat at set meal times and eat something halfway decent at each meal, especially veggies and fibre.
Lastly, if you have some unpleasant SE, call your onc. I repeat, call your onc. The oncs work for you, so make use of them. Mine had tricks that helped for most of the SEs.
Unfortunately the discomfort from the BMX can linger for quite a while. I was never really in any serious pain, but I was very uncomfortable, on and off, for what seemed like ages. The numbness is totally normal, a lot of nerves have been severed. I urge you to get a consult with a PT who specializes in breast cancer. The massage they do really helps the area feel more comfortable.0 -
Smrlvr - I had the same tx - 4dd AC/4dd Taxol followed by radiation and 5 yrs of Arimidex. Even though AC is quite harsh I was able to get through tx by using all of the resources my MO gave me. I was prescribed Emmend to fight the nausea and steroids during each infusion. I also had prescriptions for additional nausea meds and various pain pills. I think I also was given Ativan. 24 hours after each infusion I had a neulasta shot to boast the immune system. I followed my MO orders and drank plenty of water and got lots of rest. There are some good posts on this sight dealing with how to prepare for chemo. You might want to read through a few.
Overall, I managed to get through chemo with just a little discomfort. As was mentioned above, call your mo with questions or concerns as you go through tx. They have an arsenal of medications to help with side effects. Use the medications that you are given. I made the mistake of trying to tough it out after my first infusion. What a waste of time! I should have taken the anti-nausea meds the moment I felt a little off.
I found that the nurses at my chemo suite had good suggestions as well. They were very helpful. Hopefully you will have knowledgeable and kind nurses to help you through.
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Janet, I completely agree that cancer treatment is not the time to try to tough things out. I took all the help offered and did whatever came into my head that I thought might help me feel better, have more fun etc.0 -
i will be shouted down but remember you do have a choice whether to do chemo or not. ILC is particularly responsive to hormone trestment0 -
Agree, Lily.
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smrlvr,
I had the same treatment just before surgery. AC made me feel a little sick (like morning sickness) even with the meds, but once I got through a couple of treatments, I knew there was a light at the end of the tunnel and could deal. It wasn't debilitating for me. Taxol was painful for me. I had bone pain with that one that was made worse by the Neulasta shot. It did have me curled up in a ball a few days of the week. With both AC and Taxol the symptoms started about a day or two after the treatment, would peak at about 3 to 4 days and would steadily get better as the week went on. The good news is, you may not have any of these symptoms and if you do the meds may help you through. Even though I hated Neulasta with a passion, I got through cold and flu season with nary a sneeze, so it worked. Everyone reacts differently. It did shrink my large tumor. I did not have a complete response, but it did shrink significantly and I had clean margins at surgery.
Kelli0 -
I had nearly the same tx as janet but I did taxol weekly for 12 tx, not dd. If you click on my other posts you can find my threads for all kinds of things you can do to relieve side effects (like taking claritin to avoid bone pain from neulasta). I think because of what I did and the supplements I took, I worked through chemo, had no neuropathy, little fatigue, no weight gain from chemo (weight loss actually which didn't bother me) and came through it with flying colors according to my NO and the chemo nurses.
I was not close to meno not even in perimeno before chemo. By the time I was done with rads, I tested menopausal. Other than a few hot flashes that a small dose of effexor relieves, I've really had no problems--just have to eat less and exercise more to keep from gaining weight.
You can choose to create your own path for tx as others have mentioned.... Because I had node involvement, I wanted EVERYTHING and the kitchen sink thrown at my little c to knock it out the first go-round. I visited both a naturopath and had my MO on my team, and they shared information. I felt confident that whatever side effects I had would be temporary and I knew myself well enough to know I could handle it all. And I did. I didn't want to look back in 5 years with a recurrence and say "I wish I had taken my MO's advice and done chemo, or rads, or hormone therapy" back then. I trusted my MO's recommendation--I hired her as the expert voice and believed she had my best interests at heart.
Good luck. Keep us posted.
Claire0 -
do you all recommend taking the Claritin every day during chemo treatment or for just a few days before and after an infusion? Also, how much water should I be drinking? My surgeon removed my bandages the other day when he installed the port and he also removed one drain. Now I am noticing one stitch oozing a bit and some swelling in the area.n I called the BS and he just wants me to keep an eye on it. It seems like there is a bit of swelling along the incision line. Of course I can't feel anything there so I don't know if it's painful. Maybe the drain was removed too early.? Has anyone's else had experience with this after a BMX?0 -
I took loratadine (generic form of claritin) all throughout my chemo. Just keep an eye out on your incision for signs of infection redness,swelling, tenderness and a fever, red streaks.
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I am joining this topic on behalf of my partner who was diagnosed with ILC in June 2013. Just wanted to share our path so far as it may benefit others. The best advise we got at the beginning is "don't rush into treatment decisions". We took the time to get MRI, oncotype, genetics, CT scan all done before deciding on a treatment plan. On the advise of our BS we decided on neoadjuvent hormone therapy followed by lumpectomy. Rads to begin in November. The HT is tamoxifen and zoladex. So far, very few SEs from those drugs. Clean margins and 0 positive nodes at lumpectomy so we are feeling "lucky" given the circumstances. Getting nervous about rads but determined to get through this. Our mantra since getting the call re abnormal mammogram has been "We will not let this define us."0 -
smlvr, the claritin is taken the day after chemo, when you get your neulasta shot (if you get one), and then for about 2-3 days afterward. The 24 hour kind seems to be the type most recommended by the ladies on this board, and that's what I used.
Claire0 -
Oh...and I drank quarts and quarts of water throughout chemo, to flush it out as soon as possible. I took my metal water bottle with me during each infusion and had my husband fill it up from their cold water dispenser all through every infusion.
Welcome, notdefiningus. I'm sorry you and your partner are going through this, but you have the right attitude. You are right--getting information about tx options that are right for us is key in feeling empowered and hopeful. There is a wait time (scans, doc visits, etc.) between dx and beginning of every tx which allows us to be proactive and investigate tx plans.
Claire0 -
Hello,
Today begins my treatment journey with ILC. I have an MRI at 5pm and then meet with the surgeon tomorrow. I only found out my results on Oct.11 and it has been unreal over the last week. It's amazing to read all of your incredible strength here. Not knowing what lies ahead for my treatment or prognosis (no staging yet) is terrifying right now. I gather surgery is generally first then chemo? I have a lot to learn in all the terminology and meds.
Notdefiningus I love your spirit and will be making this the goal with my partner too. He is so supportive but also feeling the fear and stress of this.
Gathering strength from all of you and wish everyone well on their paths to recovery!0 -
Welcome Julie 99. You'll likely find out more information here as you come back and visit, but this community overwhelmingly made me feel less alone and less afraid about my future when I was going through dx, rx plans, chemo, etc. Chemo doesn't always follow surgery ;there are many paths for tx and many are different. Let us know what your plans are and we'll help you as best we can. Hugs
Claire in AZ0 -
Thanks very much Claire. I can see and feel already how much support and information there is here. It's really overwhelming and trying to work through the shock still I think. I will certainly be posting more information and posts. Thanks and hugs back to you.
Julie in Ottawa, Canada0 -
hello Julie,
I've just been diagnosed as well and I'm at the same step as you are, I got a MRI and I have to do a ct of chest and abdomen. I'm terrified I know how you feel. I hope that they don't find anything else in my chest or abdomen. People are telling me that the diagnostic phase is the worst cause of all the unknown, once you get the treatment plan it gets a bit better( I hope) oh and I'm from ottawa as well! Lets Hang in there together.0 -
Hi Brioche78, Oh my goodness we are in very similar situations and in the same city. I'm sorry to meet you this way but glad to connect with you. Leaving for my MRI in about 30 minutes. Yes, I hear this phase is the worst too with all the uncertainties. I hope for you and for myself that it does get better with more of a plan coming together. Stay strong and let's talk more. Thanks for connecting.0 -
This phase is really hard, all the testing and what if's, i had a freak out when having a bone scan as i thought i saw something bad on the screen. once all test are done and treatment plan is in place it will feel much better.0 -
Julie and Brioche,
You all are where I was one month ago. I feel,better now that the plan is in place and I am moving forward to conquer this little c as Claire calls it. You were smart to find this forum as these ladies know a lot and are very supportive. I would still be in crazy mode if I didn't find them. We are all,here for you !
Smrlvr0 -
Sorry to have you needing to join us, Brioche and Julie. I'm curious why they're doing CT of chest and abdomen. Did some thing give them reason to feel it was needed?0 -
Galsal, I had CT of brain, chest and abdomen prior to starting therapy and having surgery. With stage 3, I think this is quite common to rule out metastatic spread.0 -
same Momine ... I had ct and total body bone scan the 2 days after my Mx. Exactly for staging As everyone says it is the WORST time of everything I have gone thru so far just the waiting and feeling you are holding your whole life up to a crystal ball when u might not like the results. But the vast majority of first scans are negative and of course we all naturally assume we might be the exception to the rule .... I hope and am sure you Canadians will both be fine and things do settle down once your Tx is figured out ... Still daunting but a plan none the less and then focus on only ONE hurdle at a time and you will reach the finish line - are u going to try and meet up ???0 -
Nocompromises, I forgot to say that I also had a bone scan. Not a dexa, but a scan to see if there was cancer in my bones, and yes, they were referred to as "staging scans." I was in the hospital for 2 days, getting a biopsy of the tumor and then all the scans, plus a heart MUGA to make sure it was safe to give me epirubicin. Not a fun two days, but I am glad it was done, because I would rather know than be left wondering.
Since then I have had the same set of staging scans on each anniversary of my surgery, the second of which was last month. They are still clean, so unless I have symptoms, I won't have to do them next year (YAY!).0 -
Julie,
I hope your MRI went well.
J0
