Starting Chemo September 2015; join us!

tessu

Thanks Octogirl. Sorry to hear your knees are giving you so much trouble. Hope they get better soon (((hugs)))

Yes I've sometimes posted there, but not lately because I haven't been doing much exercise...

I agree exercise helps lift my mood; problem is feeling sometimes so down, that the effort to get dressed and go do something is sometimes overwhelmingly too difficult But I went for a walk this afternoon AND attended SPS class this evening One day at a time, and even if I fizzle out yet again, maybe every day that I do exercise even a little is a plus?

cajunqueen15

Hi ladies! For those facing mets or the thought thereof, my thoughts and prayers are with you. I absolutely dread going to the dentist and doctor, I just don't want to hear any of it. Pretty much any time I go, I leave in a complete state of panic. I just now made an appointment with a GYN because I am having so many issues following the hysterectomy, but I really don't even want to hear about what the problem may be. I can't handle any more surgery right now, I have no more sick time, and I'm emotionally drained. I know that this is the "new normal" so get on with it, right? Baby steps...

Good reminder about exercise. I was cleared to resume exercise last week, but haven't done much of it. No time and still low energy.

exercise_guru

Hi guys I appreciate you checking in. I am going through a phase where I am dealing with my own Survivor crap and not wanting to burden anyone. My Liver markers keep going up and I am trying to figure out what that is. Cajun I also have issues from my hysterectomy or from my reconstruction. Who knows.

For those of you who were active before or struggling now to be active I could share my experience. They sent me to PT because my arms were still going numb after hand surgery. I was so weak I couldn't load the dishwasher and the Arimidex felt like it had taken all of the cartilage out of knee. I was unable to do the band exercises they recommended so I requested water therapy. I went over the summer and then attended our local therapy pool at my gym. I would walk in the water frontward backward and sideways. I would float on my back and do some shoulder and arm exercises. I also walked in the water at shoulder depth to help rehabilitate my arms.

Over 8 weeks I saw tremendous improvement. My body still is not great at exercising on land but I have decide to make swimming and exercise a consistent part of my life. I find it tedious compared to what I did before but without a doubt it has helped in soo many areas.

Aga

ughhhh started taking tamoxifen. I could not tolerate letrozole. Wow tamoxifen sure makes me depressed, angry moody. Anyone have any of those side affects?

Any vitamins we should be taking ? Any one eating anything different now ? Hoping if I change my diet eat healthier then I already am. Maybe I will feel better

Thanks

cajunqueen15

exercise you are not burdening us! I HATE the blood work, it seems like something is always a little off but not quite enough off to take action and my mind starts racing. Everyone says to get on with your life and enjoy what you can but that is SO much easier said than done when you continue to face problems from the treatment. I am torn between wanting a PET scan every 6 months to either ease my mind or find the mets and realizing that if there are no mets, I am setting myself up for leukemia. I have already had 2 PETS, an MRI, xrays, and the max of radiation.

Aga, I am not on Tamoxifen but I really dislike the Arimidex. One thing I have found that helps is that I take the brand-name, not the generic. I have no idea why, but the brand-name does not cause my arthritis (yes, I have arthritis now at 37) to flare up as much as the anastrazole. I take Vit. D, calcium, and usually a multivitamin and I try to eat better than I did before (less sugar, more veggies), but I'm not all that successful. I use baking soda water to try to alkalize. I stopped drinking alcohol completely (used to really enjoy wine and champagne, over 2 years without a sip now). I'm not sure when a mother of three who is a primary parent and works outside of the home is supposed to find the time and money to make major lifestyle changes. It just isn't realistic. In the end, I think the cancer is either all gone or it is going to come back, whatever I do. My life choices may make the cancer come back faster if it is still there or spread more quickly, but I don't think how much kale I eat or how far I run is going to determine whether or not I get mets. It is and always was in God's hands. Sometimes I find this comforting and sometimes I find it terrifying.

I suspect I'm in for more surgery after my GYN appointment. I think I have a prolapse or some sort of problem with the mesh they used after my hysterectomy and the total estrogen block is not helping.

el_tigre

I'm still catching up, I hope everyone on here feels better.

I have no good solutions.. yet . I find that exercise (running 2.25 miles sometimes, elliptical, starting weights again this week) helps with staving off joint pain from lupron & letrozole. My arm acts up every once and a awhile if i don't wear my sleeve after working out. I have arthritis or soreness in my dominant hand (ugh) in the mornings.

I try and take vit every day (calcium, D, COq10, mushroom supp, glucosamine, green tea extract, carnItine etc), although sometimes I forget.

I still drink alcohol, i figure it is a quality of life thing that I rationalize with drinking sage tea (helps block estrogen in the system - alcohol causes higher levels of estrogen in the body).

I try and do like Cajun, baking soda water every work day. I also LOVE Kombucha which is supposed to be good for you.

I've had swollen glands (neck area) but after ultrasound and biopsy they deemed normal. No Ct, PET, or xrays yet. Hope to keeping pushing past this and maintain no dental problems (zometa for my mild osteopenia will cause complications with any major dental issues).

ahh remember the days where we all were just worried about traffic or if our team won? Ours did, GO TIMBERS! LOL

Alicia

tessu

El Tigre so very glad your swollen neck glands are normal and not THAT.

I'm been doing fairly regular Pilates through the summer but had pretty much stopped anything more vigorous, even stopped walking when my meniscus blew in May, even though it healed. But I'm now three weeks into adding Kinesis and Pilates-like SPS. The health club's fall schedule added back the Senior Circuit Training so I started that too. My wonderful local breast cancer is active again after summer break --- we meet for coffee etc every second week, and for dinner once a month. Yesterday evening tried out a new restaurant with Moroccan food --- new for me, very tasty.

The supplements I take: calcium and vit D for already thin bones, omega-3, vit C when I don't eat citrus, vit B12 (pharmacist recommended it for possible help for chemo brain), and Biotin (started that when I got neuropathy in my fingers from docetaxel --- as that has stabilized, I'm thinking of stopping it when I run out). I drink green tea every day. Have been thinking about starting glucosamine because so many here say it helps with the joint pains from letrozole, but will ask my cancer doc about possible drug interactions at my two-year checkup the end of this month, also not so eager to start yet another pill

I've spent a small fortune on spring flower bulbs and dig a bit every day to get them into the ground. I definitely plan to "be here" next spring and want an ocean of bright blossoms to greet me after the snow melts Huge change from two years ago when I wasn't sure I'd see Christmas let alone the end of winter. Counting that as a "win".

exercise_guru

Tessu

That sounds awesome. You are staying active and busy. Your bulb project touched my heart because the year before I was diagnosed I planted thousands of bulbs. They brought me so much joy the last two springs. I am not trying to figure out how to mix bulbs with my flower beds because it seems like the bulbs make it difficult to keep the weeds out and I don't have the energy to weed like I used to. I am simplifying like crazy. When I planted I did long ribbons and groupings in hindsight I should have chosen a bulb flower bed or grouped them so that I could plan annuals on top of them or something. I solved the problem by planting a late growing perrenial in mass over my bulb areas so it would come in as the bulbs fade and outcompete the weeds and grass.

Its such fun project.

Well guys my liver markers are still up. I have no idea what to do about it and I have a pain in my up left quadrant of my abdomen. Its scaring the crap out of me but it is going to be 6 weeks before I find out as I am going to a gastroenteritis in 4 weeks ( the soonest I can get in) My MO won't do any scans or ultrasounds and so I am stressed beyond but I have to accept I can't do anything about it.

About going on trips and such my husband is dragging his feet about these types of things but to be honest if BC comes back its probably not going to be a good prognosis I feel like I am chasing time and want to do more now.

tessu

exercise guru how awful you have to wait so long to get your liver markers figured out! (((hugs))) I hope it's something minor like drug-related (don't the estrogen suppressors do that to some people?) Liver "lives" on the right side, so hoping your left-sided stomach pain is unrelated and nondangerous.

I am trying not to dump on myself that it's "punishment" for finally allowing myself to feel optimistic lately --- but I found three lumps at the edge of my operated side armpit They don't hurt, but the whole area has been numb sincethe mastectomy. I'm actually glad my two-year checkup tests are only two weeks away. Going to refuse to leave the ultrasound room until the radiologists looks at those, too.

cajunqueen15

Checking in from evacuating Irma's eyewall. Still displaced, but okay. Since I got cleaned out in Katrina while living in New Orleans and had to permanently relocate, this was not as bad. I am going home next week (hopefully).

I am saying a special prayer for those facing more tests.

Two things I have had enough of: cancer and natural disasters (lived through a big san fran quake many moons ago too)!

tessu

Checking in --- I had my 2-year-post surgery check-up a couple weeks ago. At one year, one of the lymph nodes left in my operated armpit was "slightly abnormal" on ultrasound, but I couldn't get a clear explanation of what they meant. This time different radiologist: the size is slightly above their limit for normal, and the "shell" around it is slightly too thick (and that's where mets go ) , but because it is exactly the same size and appearance as last year, they said just follow -- no biopsy even The only difference is that I can feel it now, but last year I still had chest wall lymphedema, which is finally pretty much resolved, so that might be why I couldn't feel it before.

Oh, and I have to go for an abdominal CT with contrast because of the stomach pains I've been having off/on for almost a year; my GYN couldn't find my ovary on that side by "invasive" ultrasound, and the doc who did the colonoscopy last autumn had written that it seems like there's "way too much extra tissue down there" (?). But as my husband has already booked a vacation for us soon, I asked for the scan to be after. I hope that wasn't stupid on my part, but if it shows something, I'd be a nervous wreck delaying treatment (because husband said no way he's cancelling the vacation).

Also my kidney function worsened slightly -- but still in normal range. Weird, because it stayed fine all through chemo, The AI maybe? Luckily it gets measured again in one month for the CT scan.

Cross fingers for me please?

Exercise guru: I hope your docs got your liver functions figured out, and hope it wasn't anything serious (((hugs)))

exercise_guru

Hi Tessu

Don't panic. Have an awesome vacation. Where are you going?

I think its important to enjoy the little things and the big things!

I wouldn't worry about postponing the CT scan I am waiting an entire month just to get to a gastro doctor for my liver markers.

On different note I developed a rash on my right side. I thought it was my new mastectomy bra but my mom told me it was probably shingles. I had no idea I could get it that young. It hurt like crazy and I found out to late to take antivirals for it so just neurotin. Its clearing now but put a cramp in my gym water workout and visiting friends as they have babies and medical conditions of their own. The thing is I had been having deep pain on that side for about a month. I guess that is how shingles starts. Now that it is clearing up the pain is going away to so I guess it was just nerve pain. Ofcourse it freaked me out before because it was deep and closer to my ribs and some stomach pain. Stupid to panic but I was relieved I found out what it was.

tessu

ow ow ow so sorry to hear you suffered through shingles, exercise! I have a couple friends who've had it, one just over 30 and the other in her 40s --- who also found out too late for the antivirals Shingles is definitely not just an old people's disease

octogirl

ow, ow, ow, exerciseguru! Hope you feel all better soon!

and hugs to you tessu: enjoy the vacation...will be in your pocket for the tests.

Sending hugs to all;

Octogirl

cajunqueen15

Shingles, ugh! My friend who was 31 at the time caught shingles in the middle of chemo. She said it was worse than the chemo.

tkemp67

Hello Everyone,

Hope everyone is doing well!!! The Board has been pretty quiet lately, hopefully that's a good sign. I would like to hear how everyone is doing physically, mentally etc. you ladies helped get me through a very very hard time and I am so thankful to you all. xoxox

Tina

octogirl

Hi Tina;

I am doing well....lots going on. I retired in July and have been traveling: trips to see kids and grandkids on east coast and in LA, fun trip to Hawaii.

Biggest change for me will be that I am having my knee replaced Thursday. Can't wait to get it over with; other one will be done in February. This has been coming for a long time, though it is likely that letrozole hastened it by increasing by pain and stiffness.

Hope all are well

Octogirl

cajunqueen15

Hi ladies! Hope you all are busy enjoying this fall weather!

Octogirl - prayers for a successful surgery and that you are back on your feet asap! I have arthritis after treatment and your'e right, it's no fun.

I went to my new Gyn who is a 20 year survivor (also with 3 kids) and has a BRCA mutation. She prescribed me Osphena for severe vaginal atrophy. It has no estrogen but then of course I Googled it and it still seems to be a "no" for breast cancer survivors. Everything is a "no" for me. I absolutely don't want the cancer returning, but I had no idea that up to 9 UTIs are normal after a hyst. and that I may never be able to have intercourse again without intervention. She said the tissue is so thin that it actually tears with any movement, which is why sex feels like being cut with tiny razors. She compared my current state with my prior state to a balloon. Prior state of vagina is like blowing up a balloon that has been blown up 100 times before. Current state is like a brand new balloon.

If Osphena doesn't help or I won't take it, she said to look at the Mona Lisa procedure which gets mixed reviews.

exercise_guru

A Its been quiet here I wish others would check in and tell us how post chem is going.

hh that truly sucks and I do know how you feel. I have been using Estace compounded at a pharmacy as needed. It helps but I also use some vaseline in the front where it is most tender and another lubricant that is oil based.

On the hystersisters board a lot of women use olive oil, coconut oil or crisco regularly to try protect the skin and keep it from friction. For me I need like 3 days notice to have relations and have to do the estace and be careful about friction.

It truly truly sucks. Let me know what your experience with osphena is. I am thinking of trying the ring EString. for now the estace is helping and I only use it around once a week.

el_tigre

hi all!

My biggest complaint is I'm battling joint pain due to the season change, treating with acupuncture. The acupuncturist who is also a naturopath suggested Parafin (have not tried yet).

I tripped, like an idiot the other week and fell right on my shoulder and bent a few fingers backwards OUCH! I was so worried because that is my no-node arm. I iced it and elevated my hand and arm and I avoided Lymphedema, thank goodness. As for my fingers they are almost back to normal and not much pain so i must still have rubber joints like i had before chemo. i used to roll my ankle but i wouldn't notice it and there was no pain or damage, made my hubby jealous since he always rolls his and hurts it at the top of a hike.

As for sexual friction, god i hate it! I only started to experience it the last year. I have estrodial cream that both my gyno and oncologist agree that there will not be enough estrogen absorption to put me at risk for more cancer so i might go on it again. It seemed to work ok. i also have, but not tried, water based lidocaine.

I find that if we spend time "warming up" i'm fine but i do miss the quickeis .

Surgery in mid December for Latissimus flap, i tried to not have this surgery but i won't get the result i want without it due to radiation.

I have a few friends that are battling stage 4 cancer again. Hearing the news that they fought stage 4 only for it to come back months later has me question my odds. I feel sometimes we are all just time bombs and then i snap out of it by reading the stage 3 5 yrs and out board. I blame Lupron for the mood roller coaster, which i still get every month for the next few years.

Prayers for our surgeries and quick solutions for problems below the belt

Oh and I can put my hair in a ponytail!!!

Go Ducks!

Alicia

tessu

Just got home two nights ago from a 4-week "Bucket List" group tour w my husband, hampered by increasingly painful infected toe which started the night before the first flight. Because of extremely hectic trip schedule, wasn't able to get adequate care (except antibiotic pills). Acouple weeks ago an overseas ER doc said needs operation but they couldn't schedule before our group moved on again. Luckily was able to arrange op in hometown for yesterday (yay internet!) and am now recovering And there is no evidence that the infection had reached bone (as feared because infected for so long)

Yes the trip was awesome !! but I could have done without the hobbling around in hiking boots (the only footwear that fit because of swelling/pain) and being high on pain meds most of the time (husband as usual unsympathetic at best). Oh, and I would have preferred to not have gotten the unexpected phonecall from my cancer doc the afternoon before leaving, asking whether I really couldn't cancel the trip because he didn't want to wait over a month for the abdominal CT and bloodwork he ordered....which gnawed at me off and on...Nope! But yes overall am so glad I went

El Tigre and Octogirl I hope your surgery goes well. Wishing everybody else easy days (((hugs))

cajunqueen15

Octo - how are you? El Tigre, wishing you the very best with your surgery!

I decided against Osphena. When I asked my MO, he asked a specialist a Sloan-Kettering and got the below reply:

"For your patient- I typically will try vaginal moisturizers like Replens, use 5x weekly and then one hour before planned intercourse. For women with breast cancer, an alternative is Luvena (OTC)- it is parabens free and can be used as a lubricant. If they complain of pain with penetration, then an exam is needed. If pain is localized to the vestibule, then try 4% aquaeous lidocaine. If its with penetration and thrust, she needs dilators. As for vaginal estrogen, it's super safe. Even Am Coll of OB-Gyn is okay with it. sexual health in women is super complicated. Oftentimes the loss of desire is secondary because sex is no longer experienced as enjoyment… There is an online resource for your patients as well, and a study being conducted by the American Cancer Society called Find Your Paths. Might be useful to provide the link to Will2Love: https://www.will2love.com/FindYourPathsConsent/"

I just really didn't understand how much menopause would change my life at 35. I'm currently wrapped in a wool blanket because I am having cold flashes now, instead of hot flashes. And I'm on an antibiotic for yet another UTI. I have a Rx for them now at any time, because they are so common.

I just can't do estrogen, even though I am told that vaginally it should be okay. I have done everything to suck my body totally dry of estrogen, no drinking, hyst, Arimidex, less soy.

My quality of life is significantly impaired but I WILL watch my children finish high school, God willing.

cajunqueen15

El Tigre, looking good! I am jealous of the ponytail! My hair is still curly and chin length.

exercise_guru

Cajun

I feel for you I truly do because I am right there with you. Menopause sucketh big time. thank you for posting that response. I feel the skin is very thin and tender one time I tried a little vaseline at the front and things were greatly improved. I could actually walk the next day.

I think it would be a very good idea to see a urologist. My daughter has a congenital condition that makes her very prone to bladder infections. She was on a macrodantin a very low dose antibiotic for 5 years and had no other side effects to speak of but it made a big difference in her avoiding Uti's she did not get a single one and this kept her from having take any other antibiotics for bladder infections and let her immune system recover. she hasn't needed the prophylactic antibiotics now for years and rarely gets sick so I think it was worth it.

countryfrenchrose

Hello all my friends, I have been basically offline trying to decide on next moves. I put off my pancreatic cancer surgery. Too many differing opinions. I got a clear 2 year follow up mammogram but my surgical oncologist wanted me to be sure that the surgeons in NYC that I was scheduled with for the PC did not touch me. Crazy

She wants me to go to Sloan Kettering But I did not get dceduled there yet. I was never impressed with Sloan and making an appointment is like applying to Harvard. Appointment scheduling is a task. I got some bad news on my colonoscopy in October and have had to wait for an appointment for a colorectal Surgeon because I have a polyp with hypertrophy which looks bad but could not be biopsied at the colonoscopy because it is in the rectum which means a surgery is needed. All news to me. I actually started to laugh. This is when my BC started when I tried to get my routine preventative tests scheduled in 2015. I finally got to the colonoscopy which was cancelled then because of chemo back then.

On a better note, I have been going to physical therapy more regularly since I have been out of work since April. It makes my broken leg feel better. I had 3? Bad falls broke 8 ribs last Oct when they made the incidental finding of PC. Then I broke my left tibia at the knee in January. PT takes time. I have been striving for 3 times a week. When I miss it hurts again. But a little less.

I just got 2 cortisone shots for my upper left side back pain. They seemed to help a little and if I am not imagining it the cortisone although local gave me an energy rush that lasts a few days. I did not have joint pain or backaches during chem with that I V cortisone they use to tolerate chemo.

Soon it will be thanksgiving thank goodness. Halloween was a lot of fun. Looking forward to Christmas heading out to Michigan tomorrow for more doctor appointments and to be with my daughter for thanksgiving.

Best news is I will drive out with her new car! I just got her a new BEemer. With my old money that she got when shen totaled out her Subaru which I got for her when she went to Medical School up at Dartmouth in NHin 2009. I was hoping I could have it back only had 70,000 miles but it was not meant to be.

So all is right with the world? But why complain since I am here and feeling better than I have post chemo surgery and radiation and the xeloda. I have been trying to push out negativity and stay positive

tessu

countryfrenchrose, you've had things so rough, my heart goes out to you. I hope your treatments for everything go well. Glad to hear that you are feeling better

tessu

I just started on biphosphonates to stop my bones from thinning more. Pill kind, so if the SEs are awful, they should wash out of my system pretty fast. I'm going to lose my wonderful oncologist because he is moving to the other side of the country But my abdominal scan didn't show anything bad, my bloodwork is ok, and I am at least for the moment NED with no other imaging/biopsies/bloods scheduled (except control calcium because of the bone med). So maybe who the next doc will be, isn't so critical anymore. This great doc taught me to hope again, and that's not going away, and for that I'm grateful. And I told hm that. I've even started looking around for a new puppy, something I didn’t dare do before.

Wishing all of you ladies a happy start to winter

cajunqueen15

Happy holidays from our new, overbudget farmhouse that we dared to buy! You ladies amaze me with your strength. "Let is run with endurance this race set before us." Hebrews 12:1

el_tigre

OMG so Cute Cajun! Congrats on your Farmhouse!

I hope everyone has a Merry Christmas! Thank goodness for Amazon Prime

(hugs)

cajunqueen15

From our happy home to yours, Merry Christmas, beautiful ladies! "For unto us, a child is born..." Isaiah 9:6