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Topic: CMF Question

Forum: Managing Side Effects of Breast Cancer and Its Treatment —

This is a place to discuss concerns, tips and strategies for all types of side effects from all types of medications and treatments, (chemo/rads/hormonal/targeted/pain meds/etc.

Posted on: Jan 24, 2006 07:17AM

MargaretB wrote:

I thought it was better to post this under this forum rather than the starting chemo one, so hope you ladies can answer a question for me. A co-worker is now going through CMF and having a really difficult time. I gather she is on a 14 day regimen of pills; she gets something like 6 Kytril pills for nausea, so she saves them for work days. I have given her the advise I could but it may be different since I was on AC. She still has her hair and has been through two treatments; she wanted to know if she's going to lose it completely, not lose it, or lose just enough that she has to get a wig.

I figured you ladies would have the answers for me.

Margaret
Dx 12/23/04, Bilateral w/tram 3/10/05, DD chemo 5/12/05, finished 6/26/05
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Jan 24, 2017 11:50PM akshelley wrote:

Have done 8 months of CMF and can expect a couple more. It has held my metatstasis at bay, but my tumor markers starting slowly going up two months ago. Constipation, fatigue, oral sores are the main side effects and I'm struggling with jaw pain from ONJ. (I had a tooth extracted in September).

AMPOLA36...I understand when you say you're feeling lonely in this thread. I feel that way too sometimes. Let me know if you have any questions or suggestions for me.

Shelley

More than just a cancer patient! Dx 4/2009, IDC, Stage IA, 0/6 nodes, ER+, HER2- Surgery 5/29/2009 Lymph node removal: Right; Mastectomy: Left, Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Dx 6/26/2013, IDC, Stage IV, 0/6 nodes, mets, ER+, HER2- Chemotherapy 7/15/2013 Taxol (paclitaxel), Xeloda (capecitabine) Hormonal Therapy 10/1/2013 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Surgery 4/6/2014 Prophylactic ovary removal Hormonal Therapy 1/1/2015 Arimidex (anastrozole) Hormonal Therapy 8/3/2015 Faslodex (fulvestrant), Femara (letrozole) Chemotherapy Doxil (doxorubicin) Chemotherapy CMF Hormonal Therapy Aromasin (exemestane) Chemotherapy AC + T (Taxol)
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Jan 25, 2017 09:29AM - edited Jan 25, 2017 09:33AM by Mandy1313

Amapola36, if I'm right today is your first chemo. Let us know how it went--we are all pulling for you and hoping it does the trick and that your side effects are few. Remember to drink lots of water or other fluids after the chemo so you flush your system out. You can do this!! CMF is very doable!

Hugs

Mandy1313

Dx 6/2008, IDC, 1cm, Grade 1, 1/2 nodes, ER+/PR+, HER2-
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Jan 25, 2017 09:37AM Mandy1313 wrote:

Mandy, I sent you a private message.

Hugzzzz!

Mandy1313

Dx 6/2008, IDC, 1cm, Grade 1, 1/2 nodes, ER+/PR+, HER2-
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Jan 25, 2017 10:02AM Amapola36 wrote:

Mandy, did you get to speak with your oncologist? Hope all is OK! Sending white light your way!


Oncotype score 16. Luminal A. Still landed in Chemo (CMF). Nothing but good times ahead! :) Dx 10/18/2016, IDC, Left, 2cm, Stage IB, Grade 2, 1/16 nodes, ER+/PR+, HER2-
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Jan 25, 2017 10:18AM Amapola36 wrote:

Shelley, thank you! so sorry to hear your markers are going up :( Do they now change you to a new form of chemo?

Mandy1313, yes, first chemo today at 3:30. So nice of you to remember! I keep telling myself ¨beginning of the end¨ by 8pm I will be able to say: 1/7 done! Looking forward to that haha :D

I am doing as much as I can to prevent SEs: Acupuncture every week (started 2 weeks ago), fasting 48 hours prior and HOPEFULLY 24 hours after chemo infusion. I have bought a HUGE list of things advised on this forum too. Started benadryl 2 nights ago (since I am doing dose dense chemo I will need Neulasta after every infusion) and started colace last night. Fingers crossed it is not too bad. I am doing Lupron shots too, to hopefully preserve my fertility (36yo/no children yet) so worried about SEs from that too. But hey, I am doing all I can/know at the moment :)

I don't want to sound vain, but very worried about my hair :( I bought that nioxin shampoo and drinking silica and biotin. Not sure what else I can do to help preserve as much of it as I can. Should I keep it in braids or something? I wash my hair 2-3 times a week, should I wash less? I figure I can use extensions later on if it thins too much but loosing half my hair would look very odd, no? I mean, what happens when it starts growing, does one end up with a mullet type do? haha And of course also worried about skin and other SEs of being forced into menopause at this age.

However, I KNOW how lucky I am, and sometimes feel ashamed for complaining/focusing on how I will look instead of on being alive and healthy. Oh well, one day at a time I suppose :)

Oncotype score 16. Luminal A. Still landed in Chemo (CMF). Nothing but good times ahead! :) Dx 10/18/2016, IDC, Left, 2cm, Stage IB, Grade 2, 1/16 nodes, ER+/PR+, HER2-
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Jan 25, 2017 11:06AM ml143333 wrote:

Amapola - glad 1 of 7 is done! It sounds like you are doing all you can at this point to stay as healthy as possible.

About your hair - I never lost all of my hair. It did thin after the 2nd infusion, but no one but me and my hairdresser could really tell. My husband said the only reason he could tell was the amount of hair in the trashcan that I cleaned out of the sink or drain. I didn't color my hair or anything during treatment and continued to get regular trims.

I did talk with my MO yesterday and he confirmed that my numbers were within normal range and they will jump up and down. He said there is nothing for me to worry about and if there was he would tell me.

Sometimes, you just want to hear it from the people that know.

Mandy Dx 7/11/2014, IDC, Right, 1cm, Stage IA, Grade 3, 0/1 nodes, ER+/PR+, HER2- (FISH) Surgery 8/27/2014 Mastectomy: Right; Prophylactic mastectomy: Left; Reconstruction (left); Reconstruction (right) Chemotherapy 10/17/2014 CMF
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Jan 25, 2017 05:08PM - edited Jan 25, 2017 05:10PM by Mandy1313

Hi Amapola36

How'd it go today? It sounds as if you took alot of time to decide on ways of preventing side effects though I am not sure I agree about a fast before and after. Some of the meds they use in the infusion might be less toxic ifyour body has some nutrition--my onc used to tell me to eat a breakfast the day of infusion and I'd have a full breakfast--one egg, toast, and something to drink. So see how you feel but perhaps ask your onc if you should be fasting. Take care and remember you are one treatment done already.

About hair-- I also did not lose all of my hair, in fact I kept most of it. I did do a big shed after tx4, so big that i thought i would lose my hair, but I never did. I used the Nioxin shampoo, treated my hair gently--shampooed less often and did not blow dry my hair---and I don't think anyone noticed that my hair was a bit thinner.....so I hope you keep your hair too.


Hugs

Mandy1313


Dx 6/2008, IDC, 1cm, Grade 1, 1/2 nodes, ER+/PR+, HER2-
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Jan 26, 2017 11:44AM Amapola36 wrote:

Mandy, it went well. Feeling fine so far :)

I actually love fasting in general, I do it to ¨reboot¨ for 7 days every 3-4 months and it gives me a lot of energy and this incredible happiness. For the past 6 years I have followed a non-processed/no sugar/90% organic/70% plant based way of eating so fasting is not that hard when you don't get withdrawal symptoms :)

I already fast for 16 hours period every day and only consume calories between 12-8pm or 1-9pm. My integrative medicine doctor at Memorial Sloan showed me studies about daily intermittent fasting on breast cancer patients (13-16 hour daily fasts). One had 2400 women followed for over a decade and the recurrence risk for people who fasted 13 hours a day was 35% less than those who didn't fast, for every 2 hours you add to those 13 hours the benefits increase :)

Also, there are over 1200 active studies on fasting in clinicaltrials.gov it is being used for many diseases: multiple sclerosis, obesity, diabetes and like a gazillion others. For chemo, specifically, there are over 50 active trials on fasting during chemo as it makes your good cells go to sleep and be less affected by chemo, leaving your cancer cells awake bc they do not have the ability to shut down. It has shown a bigger increase in tumor reduction and SEs compared to non-fasting control groups :)

I hope I am making the right decision by pursuing this. If it doesn't help at least I know it's not hurting me and it gives me some control over something I have no control over. However, I have full confidence that it works and that's half the battle right there haha :)

Oncotype score 16. Luminal A. Still landed in Chemo (CMF). Nothing but good times ahead! :) Dx 10/18/2016, IDC, Left, 2cm, Stage IB, Grade 2, 1/16 nodes, ER+/PR+, HER2-
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Jan 27, 2017 02:40AM - edited Jan 27, 2017 02:59AM by L_in_CA

Hi Amapola

Good to hear you did well! Sounds like you have it under control and well prepared. i too did not loose all my hair. it did thin out so i regularly had it trimmed. i also had some color highlights added way before i started since i read you shouldn't color during treatment. i wanted the grey growth to blend in. After several months i wanted to color so bad. i hated my roots and was worried about stressing and shedding more hair. my hairdresser suggested a non permanent color wash. i. did notice more shedding but only noticeable by me. i was getting used to it. i washed it every 2 - 3 days. Today Im over 2 months post chemo and colored my hair with permanent product. Hope it holds up.

Im one week post radiation. I had bad burns under my armpit. The RO gave me some burn cream and it has healed gradually. My skin is still peeling like a lizard! Everyday i see an improvement.

Glad to hear everyone else is doing good. Mandy - Im so glad you are OK!

Libby



Dx 3/2016, IDC, Left, 3cm, Stage IIA, Grade 1, 0/4 nodes, ER+/PR+, HER2- Chemotherapy CMF Surgery Mastectomy: Left; Reconstruction (left): Tissue expander placement
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Jan 27, 2017 07:51AM ml143333 wrote:

Thank you Libby!

Amapola - it sounds like you have researched fasting and have been doing it successfully pre-cancer diagnosis! Way to go for researching and advocating for yourself.

I just want to say that this CMF board has become a wonderful support system as well as a forum for friendship and learning. Thank you everyone!

Mandy Dx 7/11/2014, IDC, Right, 1cm, Stage IA, Grade 3, 0/1 nodes, ER+/PR+, HER2- (FISH) Surgery 8/27/2014 Mastectomy: Right; Prophylactic mastectomy: Left; Reconstruction (left); Reconstruction (right) Chemotherapy 10/17/2014 CMF
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Jan 28, 2017 06:56PM ritajean wrote:


Welcome to the new gals on the thread. The gals on this thread are fantastic and will help you every step of your journey.

Mandy (ml) My tumor marker bounced up and down for the entire 10 years and I panicked several times but my onc always told me it was still within normal bounds. It still always made me nervous.

Libby, glad to hear that you're doing well with the rads. It won't be long now and you will be a "rad grad!"

For those of you who are worrying about hair loss.....don't stress too much. Those nioxin hair products work wonders and very few CMF gals lose enough hair to need a wig. Your heart will flutter when you first notice excess hair on the floor of the shower, but the loss seems to decrease in time and most people won't even know that you've lost any.

Both Mandy's....you have done a wonderful job giving the the new gals advice. You are both such special ladies!

Dx 11/21/2006, IDC, 1cm, Stage I, Grade 3, 0/4 nodes, ER-/PR+, HER2-
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Jan 29, 2017 07:34AM - edited Jan 29, 2017 07:36AM by Mandy1313

Amapola, I guess we just have a different definition of fasting. For me, it meant that you were not eating at all for at least 24 hour a day . It sounds as if your 16 hour fasts work well for you.

Ritajean: so glad that you are back--I missed you. .

Dx 6/2008, IDC, 1cm, Grade 1, 1/2 nodes, ER+/PR+, HER2-
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Jan 29, 2017 09:28AM Amapola36 wrote:

You ladies totally rock! Thanks for the advise and support! ❤

I am not sure how I am feeling. "well" is the answer I have been giving everyone but I feel weird, like a broken clock or something. Can't quite explain it but there's something off and I feel really yucky. Worst SE so far is constipation even while taking miralax and colace! I have an odd taste in my mouth, a light headache that won't really go away and a bruising sort of pain in the vein where the iv was.

I know I can't complain, as others have it so much worse, but I am fearing going back into that little room in two weeks :(

I love walking. I am total slow poke haha but enjoy it inmensely. I usually do 15k steps at least 5x a week. Yesterday, after three days on the couch, I managed 8k steps and today hoping for at least 10k. Fingers crossed I can go back to my usual routine tomorrow :) I think next time it will be easier to plan ahead as I know what to expect now :)

What type of exercise did y'all do during treatment? I am thinking of signing up for tai chi and a fitness class for breast cancer patients they give at the MSK integrative medicine center. The classes are early in the morning and its a 50 min commute, but since I'm not working I should force myself to go (but its soooo cold that early lol)


Oncotype score 16. Luminal A. Still landed in Chemo (CMF). Nothing but good times ahead! :) Dx 10/18/2016, IDC, Left, 2cm, Stage IB, Grade 2, 1/16 nodes, ER+/PR+, HER2-
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Feb 4, 2017 06:45PM Mandy1313 wrote:

If you can make it to MSK, then those exercise classes might be great. But if it takes almost an hour each way to get there, you are likely not going to go that often. Though as you say, it will get you out of the house---maybe ont ehdays those classes are offered, that could be your project...getting there, exercising, and having a coffee or a green tea or whatever you would want before you return home. It could be very pleasant. Although perhaps a class closer to where you live might be helpful since you may be able to go more often.


I basically walked while I was on chemo and that was my main exercise. I live in a city so it is easy for me to run errands and do other things by walking rather than by driving. Let us know what kind of exercises you decide to do.


Hugs to everyone!

Mandy1313



Dx 6/2008, IDC, 1cm, Grade 1, 1/2 nodes, ER+/PR+, HER2-
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Feb 5, 2017 07:30AM - edited Feb 5, 2017 07:32AM by ritajean

I also walked and did an exercise class for breast cancer patients. I also bowled when I felt like it. Try sucking on some lemon drops for that yucky mouth taste. They also help with any nausea you might get. I took senokot for constipation. It worked better than miralax for me. It can be purchased at Walgreen's and probably any other drug store.

It is quite common to feel " a little off" while you are going through this. Your body is getting a big "whammy!" Hang in there!

Rita

Dx 11/21/2006, IDC, 1cm, Stage I, Grade 3, 0/4 nodes, ER-/PR+, HER2-
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Feb 6, 2017 10:36AM ml143333 wrote:

I continued to walk as much as could during chemo. If I couldn't get outside because of the weather, I walked on my treadmill and read a book. It helped to pass the time to read while walking, really can't do that in the real world. When walking outside, I used headphones to listen to music or talked with my daughter when she walked with me.

You will likely have to play around with your dosage of a stool softener. I found that that for the first few days after chemo, I had to up the number of stool softeners I took and then back them back down.

I think it is pretty normal to feel a little off right now. Your body is going through so much right now.

You got this!

Mandy Dx 7/11/2014, IDC, Right, 1cm, Stage IA, Grade 3, 0/1 nodes, ER+/PR+, HER2- (FISH) Surgery 8/27/2014 Mastectomy: Right; Prophylactic mastectomy: Left; Reconstruction (left); Reconstruction (right) Chemotherapy 10/17/2014 CMF
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Feb 11, 2017 12:55PM akshelley wrote:

Hi ladies,

Well, I'm finding out that this CMF is going to be scheduled month-to-month since my tumor markers are only going up in ten point increments. My ONC says it's a trend, and to be more worried about spikes not trends. I'm at around 127. He has me do a bone scan and chest/and/pelvic CT everything three months and then reassesses tumor markers monthly with it. April will have been 11 months on CMF. You have no idea on how excited I am that I have been able tolerate "one of the tools in my tool box" for that long! As a reminder, I am stage IV, and when I run out of tools in the tool box, I'm done to wait it out for a cure. The goal is to get the most out of every tool, as long as I have a decent quality of life on it.

My ONJ flare has receded and my jaw pain is a little less. I don't know if that's just cyclical or if it's because I added Naproxen 500mg every 12 hours, scheduled along side my other pain meds. Whatever, I am thankful for the relief. My ONC was able to locate non-alcohol containing Chlorahexadine rinse and spit, to prevent oral infection while the site heals. (The alcohol containing was mint, and burnt my mouth/tongue like crazy). (So did Biotene, Dry Mouth Rinse). Because cancer patients can't do hyperbaric treatment, I'm left to heal slowly on my own.

Ladies, I've been on many different chemo's & combinations, and I can tell you for me, CMF has the less s/e. The constipation, fatigue and mild hair loss are much more perferable to me than hand/foot syndrome, neuropathy, nausea, etc. I would recommend staying on it as long as your body tolerates it. Good luck with treatment! I am also a big believer in staying positive and appreciate your help with that here on this positive board!

Many blessings!

Shelley--Wasilla, A

More than just a cancer patient! Dx 4/2009, IDC, Stage IA, 0/6 nodes, ER+, HER2- Surgery 5/29/2009 Lymph node removal: Right; Mastectomy: Left, Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Dx 6/26/2013, IDC, Stage IV, 0/6 nodes, mets, ER+, HER2- Chemotherapy 7/15/2013 Taxol (paclitaxel), Xeloda (capecitabine) Hormonal Therapy 10/1/2013 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Surgery 4/6/2014 Prophylactic ovary removal Hormonal Therapy 1/1/2015 Arimidex (anastrozole) Hormonal Therapy 8/3/2015 Faslodex (fulvestrant), Femara (letrozole) Chemotherapy Doxil (doxorubicin) Chemotherapy CMF Hormonal Therapy Aromasin (exemestane) Chemotherapy AC + T (Taxol)
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Feb 12, 2017 07:36AM Mandy1313 wrote:

HI Shelley!

You are a real trooper--eleven months on CMF and still going. I just wanted to chime in and wish you well. I don't have advice for you since you probably know more about CMF than I do.

Lots of hugs,

Mandy

Dx 6/2008, IDC, 1cm, Grade 1, 1/2 nodes, ER+/PR+, HER2-
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Feb 12, 2017 10:25AM Amapola36 wrote:

Shelley, so happy CMF is working for you. Here's to your CMF tool working for years and years :)

I am doing CMF too, just did the second of eight cycle. We can keep each other company :)

I am doing accupuncture and fasting and so far the SEs are very minimal so I am very happy. The constipation has been better this time around bc I am eating 4tbs of flaxseed every day (it helps with the hot flashes too). I have it as cereal with fruits, nuts and cashew/almond milk to break my fast every day. I am also drinking water like a mad woman haha

Tons of hugs, darling

Oncotype score 16. Luminal A. Still landed in Chemo (CMF). Nothing but good times ahead! :) Dx 10/18/2016, IDC, Left, 2cm, Stage IB, Grade 2, 1/16 nodes, ER+/PR+, HER2-
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Feb 16, 2017 11:56PM Katcan wrote:

Hi all as Ampola36 knows I started on CMF today. I have horrible headache and hot flashes. Not sure if it is the Cytoxan and or decadron ( steriods). I have a significant cardiac history. Thus CMF for 6 cycles. It is wonderful to hear from other CMF Warriors.

Chemotherapy 2/16/2016 CMF Dx 10/14/2016, IDC, Left, 2cm, Stage IIIB, Grade 3, 7/11 nodes, ER+/PR+, HER2- Surgery 12/2/2016 Lumpectomy; Lymph node removal: Left, Sentinel, Underarm/Axillary
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Feb 17, 2017 10:12AM Mandy1313 wrote:

Hi Katcan!

I think the hot flashes are likely from the CMF--I can't explain your headache. Have you tried regular headache medications such as ibuprofen or even aspirin. I'd check with my onc about that you might do to relieve your discomfort. There are many foods that oncs request that you not eat while you are undergoing chemo so I don't want to suggest something for the hot flashes. While I had some hot flashes during chemo, they were all during the night and not unbearable so I never did anything for them. But everyone is different.

But hang in there--you only have five more treatments to go!

And I'm glad you are doing so well Amapola.

Hugs

Mandy




Dx 6/2008, IDC, 1cm, Grade 1, 1/2 nodes, ER+/PR+, HER2-
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Feb 20, 2017 02:34PM ml143333 wrote:

I agree - the hot flashes are likely from the CMF. Mine started pretty much immediately and I still have them although I'm okay with it because I don't have a period any longer!!!

I got headaches during the CMF infusion when they pushed the Cytoxan. My nurse also told me that sometimes it would also make people sneeze. When I told her about the headaches, she slowed the infusion of Cytoxan down and the headache subsided.

Mandy Dx 7/11/2014, IDC, Right, 1cm, Stage IA, Grade 3, 0/1 nodes, ER+/PR+, HER2- (FISH) Surgery 8/27/2014 Mastectomy: Right; Prophylactic mastectomy: Left; Reconstruction (left); Reconstruction (right) Chemotherapy 10/17/2014 CMF
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Feb 22, 2017 09:08AM Westthebest wrote:

Hi CMF friends,

Slowing down Cytoxin helped my headaches too. Anyone else experience severe bloating during treatment and day after? If not, wondering if I drank ' too much' water?? Also, I felt like crying a couple days after but got so stuffy I couldn't . Is that why some of you are pro-active with Claratin?

Best to all- brave warriors!


Dx 10/2016, IDC, Left, 2cm, Stage IIA, Grade 2, 0/3 nodes, ER+/PR+, HER2- Chemotherapy 2/1/2017 CMF
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Feb 22, 2017 09:35AM Amapola36 wrote:

west, i get swelling in my left arm/foot. Have no idea why it inly happens on my mastectomy side. Terrified its lymphedema! I take the claritin for neulasta pain. Organic homemade Ginger/lemon tea is helping with the swelling/bloating.

I have chemo wednesdays, my worst days are thurs/friday. I honestly think acupunture/fasting are reslly helping with SEs as they have bedn minimal so far... Have a freaking UTI today, though... chemo+ lupron+uti that's my day today lol

Oncotype score 16. Luminal A. Still landed in Chemo (CMF). Nothing but good times ahead! :) Dx 10/18/2016, IDC, Left, 2cm, Stage IB, Grade 2, 1/16 nodes, ER+/PR+, HER2-
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Feb 25, 2017 02:59PM Westthebest wrote:

Hi Amapola, sorry about your uti and lymphoma possible. Nurse noticed my left hand slightly swollen/great-doc says watch. Fighting off mouth sores. Soda/salt rinsing. Talking myself into a walk soon. Only dry day for a week again❄

Dx 10/2016, IDC, Left, 2cm, Stage IIA, Grade 2, 0/3 nodes, ER+/PR+, HER2- Chemotherapy 2/1/2017 CMF

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