Starting Chemo March 2015

SpecialK

trvler - I had a total abdominal hyst/ooph nine years prior to diagnosis with breast cancer, so surgically induced overnight menopause. I started hot flashes the next day and they have continued, sometimes hourly, since then - no change during chemo or from the AI drugs. I have been on both Femara and Arimidex, but I started on Femara. I developed a painful trigger thumb on my dominant hand after six months, which I mentioned to my MO and he switched me to Arimidex. The trigger resolved, although I had been wrapping it so it might have gone away on its own, and I did ok for about a year after I switched. I then developed a trigger on my wedding ring finger, one toe and my left ankle. Right about the same time I was out shopping with a friend and stepped off a curb between two parallel parked cars, was looking up and down the street to see if I could cross, and ran smack into a trailer hitch on the back of one vehicle. I twisted my knee and it seemed fine at the time but it gradually got swollen and hot, with no apparent injury on imaging. I ended up needing a cortisone injection to calm it down. The level of inflammation was attributed to Arimidex, which I had been on for about 18 months at that point. I figured that if I was going to have these problems I would go back to Femara since that is the drug my MO favors for its very slight statistical edge. When I filled the new Femara prescription I ended up with a different generic manufacturer (Teva instead of Mylan) because that was what the pharmacy was now using as their formulary. I have been on it for about 18 months now and have had no problems. I advise changing manufacturers if you experience issues - each generic manufacturer uses differing dyes and fillers and those can affect individuals differently. If you can't find a maker that works, switch drugs. The only one I don't want to try is Aromasin due to its steroid content, it works with a different mechanism than Femara and Arimidex - I just don't do well on steroids and I have had healing issues with reconstruction, and steroids are a healing inhibitor. I also have skin cancers removed every six months - often by wide excision like a lumpectomy, so I don't want to have healing issues with those as well. Some who have had joint pain issues do much better on Aromasin though.

The conversation about the husbands made me laugh. My husband was having some low abdominal pain and had a scan. They found diverticular issues so advised him to cut out seeds and nuts. He was using flax seed in his daily shakes - he stopped and the problem resolved. During that scan they happened to catch the bottom of both lungs in the field - and found numerous nodules bi-lat. From teeny up to 6mm, lots of them. He had another scan specifically of the lungs and was sent to a pulmonologist. While we were waiting several weeks for that appointment he was a bit scared and kept joking that I had to be nice to him because he had lung cancer - I countered with he had to be nice to me because I had breast cancer! Then we would both crack up! This went on daily until the appointment when the pulmonologist indicated that he felt these were "incidentalomas" meaning they were harmless random findings by accident during a scan, usually for something else. This is one of the reasons oncologists are reluctant to scan without symptoms - we all can have random things (rleepac - I'm talking to you girl!) that show up and then need to be investigated, biopsied, cause anxiety, etc. and turn out to be little nothings.

Jackbirdie

you really are the best Special! I miss you when you're not around! Have learned so much. Not just medical stuff either. Just how you deal with it all is inspiring. Thank you

molly1976

Speaking of husbands, mine is about to have a vasectomy and he is going to be the biggest whiny patient of all time. I try not to give him the I HAVE CANCER, SHUT YOUR FACE look too often but I know it's going to be coming out quite a bit!!

SpecialK

molly - when my DH had his vasectomy they gave him Valium to take at home prior, then gave him something during the procedure, which was done in the military medical clinic. He was a military aviator - had a pure system very susceptible to narcotics because they were never allowed to self-medicate with anything other than Tylenol on flying status. We came outside back to the car, him walking like John Wayne and high as a kite - and he argued with me that he could drive us home! It was hilarious!

jackbirdie - happy to be of service! I find a dark sense of humor invaluable, and finding the funny everywhere possible (you guys have maintained the humor in this thread all the way through - Bravo!) I also feel that 28 years of being a military spouse has helped me deal with a lot of adversity. I'm little but I'm feisty.

rleepac

I know Special! Mine is probably an incidentaloma too and I'm not worried about it. It's just always better to hear 'all clear' rather than 'all essentially clear'.

Just saw the MO and he is ordering a brain MRI because of the worsening nausea and headaches. We both agreed that it would be highly unlikely to have any cancer spread on chemo and brain mets are unlikely but we're taking the 'better safe than sorry' approach and just going to scan to be sure.

Bekah

molly1976

Special, my husband is a recovering addict and has been clean 9 years! I have no idea if he'll even let them give him stuff like valium, which will only compound the whininess problem. Surely there is something non-narcotic that will work better than Advil, etc.

BBwithBC45

Speaking of jokes-my husband told my PS that he was willing to offer his nipple for my reconstruction. Asked my PS if he performed nipple transplants.

Ladies, I'm reading every day while on the run and I miss talking to you all. I went back to work in the office and between work, commute and exhaustion I rarely am able to type something up.

BB

ksusan

My wife says it's lucky she's bi and likes the flat chest look, too.

SpecialK

rleepac - my MO is a scanner and I am reassured by my clean scans to date - I totally get that better safe than sorry thing - hoping for squeaky clean scans for you!

molly - congrats to your husband on his recovery - that is tough to do! I am thinking maybe they will use blocking anesthetic that may give him a longer lasting effect, like an epidural for labor. Also - yet another use for bags of frozen peas - eat them for dinner, use them to ice extremities during chemo - use them as ice packs on your vasectomy site!

Italychick

Eileen, did you have any arm swelling at Lake Arrowhead? We are heading up to Big Bear and it just occurred to me to worry. I don't think I have lymphedema, but I get a tiny amount of swelling if I push my arm too much, but it goes away quickly. I figure it is still surgical healing because I know it takes quite awhile for things to heal. Great, another thing to worry about!

SpecialK

Italy - watch your salt intake, hydrate, and move your arm around with fist pumping and deep abdominal breathing periodically. I have bi-lat lymphedema and had no issues or increased swelling when I went to Austria/Germany - we were at alp altitude for about half of the trip.

Lovemylab

Bekah

Thinking of you and MRI of brain. My MO said same thing, better safe than sorry. It wasn't to bad. They played radio music into headphones to drown out the jackhammer noise.

Cute stories of SO's but I just have my lab and the kitty. They don't give me much grief. My 20 year old daughter thought she should take me to UC today for chemo fatigue and the big D which I get every time. Nice to know she cares. She wanted me to go out to lunch with her. She must have thought I was dying if I didn't want to eat! I don't often refuse food but today is one of those days!

Maureen

Italychick

thanks specialk. I have been packing stuff, etc., and just realized I better stop and let my husband do the heavy lifting. I'm so used to doing everything I don't stop to think. I can still put my wedding ring on, so I'm thinking everything is okay. I do fist pumping, put arm up and do circular wrist motions, and then also crawl my arm up a wall. Any other tips?

littleblueflowers

Italychick, do you do Manual Lymph Drainage excercises? Its good stuff...seems to work..

Ok, March ladies, when does the chemo fatigue start to lift?? Its been 7 days since my final Taxol and my energy is all over the place!

eheinrich

Theresa, I don't get swelling at Arrowhead (I'm actually there right now!) only when I fly, but I got a compression sleeve for that. I flew a lot this spring/early summer.

Trvler

Enjoy your trip, Theresa! Eileen, I wish I were there with you! I hiked Mammouth once and it was brutal. We were inexperienced hikers and my friend picked the trail marked 'grueling' which we found out AFTER we were there. But coming out was much easier.

Trvler

Having fun with my new toy. I just bought a Fitbit to track my heart rate. It isn't as bad as I thought it was. So now I want to increase my steps. Good motivator.

Carrie37

Thanks for the rads update Lee! Hope all are doing well. I missed a lot yesterday. Worked and then went to a mastectomy support group. I found it very helpful and the ladies were super friendly. Just me and another new person who have yet to have surgery. Everyone else is a few years out. Some good advice and learned new things too. All makes me so nervous. Had my first Herceptin only today. They did the drip over an hour and I feel fine now.

SpecialK

Italy - I would say periodically through the day do some very deep breathing - really push your diaphragm in and out. If you haven't been shown how to do MLD you can do some dry brushing. You can Google it - I attempted to link one but it won't paste. The one I liked is on the first page of hits if you type in "dry brushing skin" and it is the first video that comes up

jumbledbamboo

Deep breathing is a great idea. I hold my breath a lot and for no reason!

shaz101

little blue I had my final chemo on June 16 and I've been feeling more energetic each day over the past 2 weeks. You just have to be patient,it'll happen.

SpecialK I had an incidental finding on my left adrenal gland. A 4.5cm tumour. They took it and my adrenal gland out. They told me that I wouldn't have any negative affects because the other one would take over... I don't think I agree with this. The tumour was a mixoid and was presumed benign. I've struggle with fatigue ever since and that was 8 years ago.

Bloody lymphoedema 😡

Katy are your visitos still there or have I missed a post? I hope you're feeling better today.

Ahere's a pic from my walk at Port willunga yesterday.

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Jackbirdie

Sharon- so glad you got out for that beautiful walk!

Yes. Visitors gone. Excellent visit. Tearful goodbye.

rleepac

1 week PFC! Just felt good to say that...

Jackbirdie

Excellent, Bekah

ksusan

Go, Bekah!

Trvler

It felt good to hear it, Bekah!

IndyGal35

That IS great, Bekah! I think you're still winning the award for most hair too!

Sharon, every time you post a picture, I fall more in love with Australia. Boy, your gorgeous country is sooo on my bucket list. We actually had a priest from Adelaide on our cruise through the Panama Canal last December. I'm trying to remember his name/parish, but he was very funny.

Meme117

I'm 7 pages behind so I'll just post my update then go back and read. Hope everyone is doing well!!

I know you'll appreciate and understand - yesterday I finally felt good enough to take a good 40 minute walk, felt sooo good. Weather in PA has been beautiful, was able to turn off the air. Still have taste issues and twitching eye and lashes and eyebrows are thinning everyday. But I'm moving towards my old self - yippie ki ah

Met with radiologist and she was wonderful. She thoroughly explained my options and had the best bedside manner wish all my doctors were like her. Problem is she'll be out on maternity when I start radiation. Anyone do 6 1/2 weeks? And lay on their stomach?

Met with BS and everything set for 8/4. Hate how hospital will call night before to give me a time, why is that??? BS also had me take a class with a nutritionist, trainer, therapist and physical therapist. Of course they focused on eating well, working out, stress relief and then how to deal with lymphedema. I asked her about eating organic, she said for me to switch to organic milk and meat due to hormones. Who does organic? Where do you find the best prices?

SpecialK

meme - prone rads is supposed to be safer for heart and lungs. They give you a surgery time late in the game because the schedule is changing right up until that day due to emergent surgeries and cancellations.

Jackbirdie

Meme- it has been quite a financial shock, but I have gone almost all organic since dx. I make some exceptions. At this time of year farmers' markets might be an idea, but it's expensive everywhere. I know the horse is out of the barn but I just can't knowingly but bad stuff in my mouth anymore.


Definitely I follow the organic meat and dairy.


And Special K once shared the lists of the "clean fifteen" and "dirty dozen" for produce..it's a long list so I'll send it to you privately.

I know your surgery is just a week or so away. I have 8/4 on my calendar with your name. I will be thinking of you in the days leading up to it and after. I know you will do fine. Hugs and mojo to you.