June 2007 Chemo

Hi all,

I haven't written in many months, but just came to check the boards and thought I'd add my bit.

I was Dx 4/21/07, Stage 3A, Grade 2, 4/7 nodes, ER+/PR+ HER2-.  While going through treatment, I got engaged to my much younger Turkish fiance, an engineer in Istanbul.  And as soon as I finished my last rads in late Dec., I boarded a plane and moved here to Istanbul permanently.

I've been here for 5 weeks, and our wedding was on Jan. 12th.  (I'm 43, no kids, this is the first marriage for us both).  We are having a great time, and Istanbul is a wonderful city.

I had been going bare-headed throughout chemo/rads in the U.S.  I went bald to work, to stores, etc.  Here, even though my hair is in the 3/4" long swirling guinea pig stage, I wear a wig outside of the house.  I look very obviously foreign with an auburn, short-haired wig, too, as the style here is to have very long wavy hair.

I just started working as an English teacher last week for a name-brand language school.  They don't know I had cancer, and nobody seems to notice I'm wearing a wig.  I can't wait until my hair grows out a bit.  I'm sick to death of this scratchy wig, never having worn one in the U.S....  And I can't wear a scarf here, as that is always a religious/political statement in Turkey--the source of protest marches.

By the way, my hair had been long, dark brown, wavy, and had about 10 gray hairs prior to chemo.  It came in salt and pepper, with 100% gray hairs framing my face.  I died it before I came here.  Does anybody know if the gray will always be there?

Also, anybody else here on Tamoxifen?  I started Tamoxifen 3 weeks ago.  I heard it caused weight gain, but I'm eating like a pig here in Turkey and am losing weight.

America:  low-fat or no-fat everything, 19 years of being a vegetarian, 2-4 miles daily walks, no meds....   weight = 154.

Turkey:  full-fat everything, meat fried in olive oil and slathered with cheese, a pint of ice cream a day, walking maybe 1 mile a day and on Tamoxifen...   weight = 146.

Anybody else on Tamoxifen?  What has your experience been?

Well, that's all for now.  Now that I have Internet access, I'm looking forward to reading the forum more regularly.

Sharon in Istanbul

Linda,

Why do you have to wait for your surgeon to have the port out?  A medical student removed mine.  It takes about a minute.  You just sit on the table, they inject with a local anesthetic, cut along the old scar line and pull it right out.  Then sew you up again, of course.  It's not nearly as complicated as when they put it in.  Good luck!

Sharon

Hi Everybody,

I hope this works. The last 3 times I tried it did not, even on the new computer. I'm thrilled to hear that you are NED, Shrink. I go for scans next week and I'm hoping to hear the same.

Mt hair came back silver and steel gray and it used to be reddish with bits of gray. A 6 year survivor friend says that hers changed back to black after a while. I kind of liked the silver, but I got the urge to get some Henna and did mine last weekend. I look much less sick! I wasn't expecting that, but my family likes it a lot and it makes me feel better too. The red is too red, but I can add chestnut next time I do it--which will have to b about every 8 weeks now if I don't want gray roots.

If any of you try this at home, be sure to add 2 tablespoons of apple cider vinegar to your henna mix or else it will not work well on gray.



Hooray for hair. Any at all is great!



Debbie M. In Georgia

Sharon, congratulations on your marriage, best wishes to you both!  Istanbul sounds amazing.  I would love to travel beyond the US and Canada but I'm a fraidy-cat on planes and would need major drug intervention!    I love the Turkey diet vs the American diet, who knew it could be a weight loss plan?! 

Bonnie, so glad to hear your husband has improved.  Seems like you've had your share of illnesses lately.  Hope the CNA classes are going well for you. 

Linda, did you get your port out yet?  I had a nurse yank mine, in the hospital but a nurse none the less.  It really was much easier than the insertion.

DebbieM, hi!  My hair is gray and getting longer.  I'm itching to get it colored but am waiting....for what, I don't know. LOL   Congrats on the new 'puter.  Good luck on your scans next week.

Shrink, hooray, you're done, you're done!  This is cause for celebration...passing around chocolates and drinks of choice. 

I have been on Arimidex for a month now and I'm doing fine.   The leg pain and feet neuropathy have virtually disappeared.  I think that may be the Lupron shots welcome SE..it is used for diabetic neuropathy as well.   My bone density tests came back within normal range for my age but I've started taking calcium and Vit D tablets to ensure less bone loss....or help prevent more bone loss. 

The sun is out today, shining brightly but it snowed last night, about 6 inches or so.  I'm so ready for SPRING!  

I just started painting the den today when I thought I had all the supplies needed....seems I can't find the roller brush holder so ANOTHER trip to Home Depot...grrrrr....I hate not having everything I thought I did! 

Hope everyone is doing well and continuing on their survivorship journey. 

I don't know what drew me to post earlier today but I just started going through some other threads and I came across the sad news that CY (b445), who started our thread, passed away last night. I feel so sad but truly hope that her family finds comfort in knowing she is out of pain. My thoughts and prayers are with them...

My heart was heavy when I heard about Cy.  So many special women recently.  Hoping her family is doing okay.  I've been busy but also trying to stay off of here some.  I have enough worries and sometimes I get stuck when I read about some of our sisters.

Linda - I am still doing herceptin but I can't wait to ditch this port and if it takes an outpatient procedure, then so be it!!  I still can't get over how differently our doctors do things!

Cyndi - glad your skin held up over rads!  Rads was harder for me than chemo was - sounds weird right?  I finished in January and everything healed well, just have a weird tan line which is fading.

Terry - any problems with the Arimidex? 

Shrink - hope you healed well from rads.

I'm sure I've missed a bunch of updates and WOW!  Looks like ALL of us are hanging out on other threads or trying hard to find our new normal!

Between home, work, relatives etc. I know my days seem to be flying and I usually can't wait to go to bed - regardless of whether I actually can sleep or not, I just want to hibernate!

Mom is doing fairly well, some chemo changes because she came down with bronchitis so they changed her to every other week instead of the 3 weeks on/1 week off to help with counts and she gets a neulasta shot each time as well.  The tissue infection is still a problem but the doctors are trying to get a handle on it.

My liver counts were up at the end of January so I'm going Tuesday for a liver function blood workup and see the onc on Thursday.  Hoping and praying it's something easy to fix and not that my cancer has metastisized.  Trying not to think it but you guys know how hard that can be.

Thinking of you all and wishing you well.

Dawn

It was nice to see a couple posts.  Dawn, I will be thinking and praying for good results on your tests and for your mom's issues.

I am continuing taking Arimedex and have gotten used to the joint soreness and hot flashes.  At this point I plan to continue for the prescribed 5 years.

A couple weeks ago I spent the weekend in a class getting my certification to ride a motorcyle/sidecar.  Last year before dx I bought a Russian Ural sidecar rig to ride off rode with my husband riding his off road bike.  Well, needless to say, it stayed in the garage all year waiting for me to get well.  I am proud to say that I passed with a good rating and can now legally ride the rig on the road.  We plan to get up into the Gifford Pinchot National Forest this spring and summer and have fun on some of the forest roads.  It feels so good to have my life back.  Sometimes I have to stop and remember to enjoy every day; the spector of recurrence is heavy at times.

I hope this finds you all well and busy.

Take care,

Hi Terry. Yes you are correct. Cancer does Suck!! Sorry to hear you are having trouble with palps/racing heart. I was too. They gave me an EKG and bloodwork and couldn't find anything wrong. My onc just said , menopause can cause this. Wonderful. I was having a run of them. For a few days. And then , they just stopped. Hope its nothing serious. My prayers are with you.xxxx

Debbie congrats! And the sidecar sounds awesome. Hope you have lots of fun this year , you deserve it!xxxx Melody

Okay, me too! So nice to hear from some of the Junies...glad everyone seems to be moving on.

Bonnie, I'm so glad your husband is doing better and good luck with the thyroid!

Debbie, the sidecar sounds great! Where is the Gifford Pinchot Nat. Forest?

Dawn, I really hope the liver counts are meaningless and your mom is doing well.

Terry, cancer sucks so much! But I may be one of those that likes her life more now than before--doesn't mean I'm glad I got it though! I'm glad you are tolerating the Arimidex. I'm on Aromasin and I really don't notice anything--I still have joint pain but I've had it since Taxol.

Melody, thanks for the hugs!

As far as palpitations, I have had them my whole life but they do seem to occur a bit more often since chemo. But I've had an EKG too and my heart is strong. Since I've always had them (so has my mother) I don't really worry about it too much. In fact, I will say that I am strangely not too worried about a recurrence either and I thought when I was done with tx that I would be. I felt very depressed during rads (even though I had no problem with it) and would cry all the time but within days of finishing I felt so good. I was so sad for so long that I was sure I would never feel joy again. But I do! I feel really joyful now...I think it's a combo of being done (and I'm not really done since I'm getting herceptin), having some hair (about 1") and our beautiful spring days (we had a very cold winter--for us). I'm just glad to be happy again! And I do feel that many things (not health related) are better now. I have a clarity about what's important to me that I didn't have before.

Cyndi

I think I started a trend!  We're all checking in - anybody notice a missing name (I'll try to go back and check!) so we can check on them?

Shrink - saying a prayer - please let us know and I totally agree - the B word and several others as well!!

Bonnie - glad to hear DH is doing well.  Wasn't there an issue with your dad or his as well? (too lazy to try to go back & find it!!)  Sounds great that you are getting back to class but not about that thyroid - let us know what happens.

Cyndi - I don't do geography so I really don't have a clue how big Las Vegas is but if you are anywhere near "the strip" and will be around mid-August, I'll be your way on a family vacation - thinking we could meet!

Terry - I am so ready for spring as well and looking forward to feeling the warm breezes through my hair!!!! (this was my "funny" last summer wearing a scarf on my bald head that I couldn't feel the breeze on my sister-in-laws boat!!)  Good luck with the monitor and let us know what's up!

Melody - menopause sucks, plain and simple and I think the chemopause is even worse than what the normal menopause sounds like........................... UGH.

Debbie - the sidecar sounds so cool!!  A friend of ours has one (lots of toys of course) and his 9 (yes, 9) kids love getting rides.

My mom went to see our oncologist today - her tumor markers are down so the doc said - good sign, chemo is working to shrink them!  Yeah! 

My liver function test was down, not normal yet, but she's not concerned.  She is sending me for an abdominal/chest ct scan since I do have a pain at the bottom of my rib cage towards the middle and I've been concerned about it.  She said no rush, she thinks it won't show anything - I told her she's just not wanting to hear me whine anymore!! 

I think I wrote a book.................................

Nice to catch up with you guys!

Dawn

Hello All!

Well, I went today to get my radioactive dose of iodine to kill off my thyroid. Yesterday I started running a low grade fever, 99-100 degrees, nothing too high but just enough to know you had one. I also have been noticing some extra tightness around my expander on my reconstructed side. So I mentioned this all to the Dr who was going to be giving me my iodine. She, by the way is a radiation onc at one of the hospitals. She gives me a pretty thorough going over, and when she looks at my neck and breast area she asks if I'm always this red?? I said "no, didn't notice I was red......but I was! She says she thinks I have "radiation recall"; this can be caused from the chemo and rads I had, or I now just found out.... a side effect from the tamoxifen and the rads I had. Would have been nice if someone would have mentioned this possible effect earlier! I had never heard of such a thing!  She contacted my PS right away (I'm due for exchange surgery on April 11th) they decided to put me on some antibiotics....just to make sure I don't have an infection. I have to call on Monday to let them know how things look, if I am still red and irritated there is else something they will give me. So here I sit.......all radioactive inside and out!

Hi Dawn! I am taking tamoxifen , and am having bad hotflashes , which make me sweat horribly. And when I start to sweat , I itch really bad. Is that what you experience? Or did the tape make you itch? Just wondered , cause I never used to itch when I would sweat. I guess its just another "lovely" SE of tamox.. Hugs. Mel

Hey Mel and Terry!

The itching I was describing was because I was sweating under the clear tape bandages - but I was on Tamoxifen for 15 months and found it to be very drying to my skin.  Maybe try extra lotion especially after those HOT showers!  I kind of figure the Arimidex has similar side effects as well.

My first cancer was er+/pr+ and my recurrence was er-/pr- and both were HER2+++.  Onc isn't concerned with putting me back on hormonals at this point - I guess since I had a recurrence the tamoxifen didn't cut it and she feels that herceptin is going to be my best answer - I'll finish that up by the end of August.  No clue why the change - I did read that sometimes cells become resistant to the tamoxifen.  I trust her immensely though so I only questioned her a gazillion times till I was happy and she was laughing at me.  We have some interesting conversations!!

Menopause sucks.  Got a copy of my hormonals, looks like I have less estrogen than an adult male................

and of course, that situation creates others that make for interesting conversations as well!! hahahahaha   UGH!

Hope everyone had a good weekend - they are NEVER long enough!  I vote for a 2 day work week and a 5 day weekend!!! 

Dawn

Bonnie - you are going to feel marvelous after the exchange!!  The implant (mine is silicone) is so much more comfortable than that expander!!  10 days to go!!!  Try to check in to let us know how you are feeling.

Do you have to do anything special with no thyroid?

Good luck with your classes!

Hope everyone is having a good week!

Dawn

Hey Bonnie - I know the feeling, I worried about how everything would feel and look but I had read other posts that shared how much more comfortable I'd be and I was so relieved!!

With my first dx I had the mast, axillary dissection, reconstruction and tamoxifen.  Just as I was healing from a tattoo color touch-up to my new areola and reconstructed nipple, I felt a bump near my scar tissue that just didn't feel like the rest of my scar tissue.  Had a biopsy within two days and found out I had a recurrence that was much larger than my first cancer.  I had a clear PET Scan and headed into surgery again to remove it and then had chemo (herceptin through August) and radiation so my timing is different than most.  Radiation was harder for me than chemo - sounds weird I know.  My rad onc was very aggressive with my treatment - ended up with 28 full treatments with the use of a bolus every time and 5 additional full treatments (these weren't boosts, just didn't do more of the supraclavical area) also with the bolus every time - I had 2nd and 3rd degree burns that have healed nicely and gave me a very interesting tanline that is fading!!  I was quite toasty!!   My implant seems fine to me and I'm guessing I'll have another breast MRI later in the year to compare with the one I had in November before I started rads.  I was supposed to see my plastic surgeon in January but since I was just finishing and sore as you know what, I haven't been back yet.  Plus, I'm having a new issue with pains under my ribs (same side).  Going for a chest/abdominal ct scan Friday - several nurses have said gall bladder............. as long as it's not cancer again.  Going for an xray of my wrist this afternoon - hurt it moving a couch - thought I just sprained it or whatever but it's been a couple weeks - spread a small blanket through the air and heard a crack so I think I may have a fracture now - it never ends and this was my own fault!! hahahaha

I'll let you know what's up!!  How is your DH doing by the way?

Hope some others check in that they are doing well and enjoying the weather!!

Dawn