Chemo Starting Sep 09
Comments
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Neece - It's good to hear that the sleeve is working for you, instead of the bandages. It does make sense that swimming would be good for lymphedema. I was just getting motivated to start swimming at the YMCA which is a two block walk from my home, but the radiation instructions I got strictly prohibit it because the chlorine in the water is so drying to the skin. So...won't be swimming for another five weeks.
China - I start rads tomorrow too! I'm sorry for your nail problems, but good news on your renewed energy. I finished Taxol three weeks ago and while my finger numbness has disappeared it is still up and down on the energy front. May rads treat us both well...
Patty
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Patty- Thank for crossing everything for me. I have everything crossed too! Clear scans.That's all I want, for Christmas and everything else! Swimming sounds wonderful. Those 5 weeks will fly, and tomorrow after your first rads you will go, gosh that was easy! :-) Glad your tingling went away, my onc said 8 to 16 weeks, I really hope it doesn't take that long, but if it does that's okay as long as it goes away!
China-Good luck with the rads tomorrow too! Hope your nails improve! Was your vacation okay?
VivkiLynn- I hope and pray your scans come back clean and clear too!
Neece- I am so glad the sleeve is working, how is the job. I don't swim much or very well for that matter, but the idea of flailing around in warm water sounds nice!
Hope you all are well! We are under another winter storm thingy Wonderful!
Love
Barbara
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Hello SOSisters... just dawned on me that I am going to miss a week of posts and how everyone is doing! My laptop is too heavy to lug with me. Question for you? Am I going to beep when I go through the scanner thing at the airport because of my port? The things I think about!
Patty - good luck with your rads tomorrow. You will do great and realize this is a breeze compared to chemo!
BarbAnne - be saying a prayer for you but know you'll get a clear scan on Tuesday! Sorry to hear your feet are still bothering you! Did you get your storm?
Neece - you sound like you are doing well. Glad your arm is getting better. Hope you have a great 2nd week at your new job.
ChinaBlue - good luck with your rads tomorrow. You will do great and realize you didn't need to be concerned! Sounds like you have a wonderful daughter. Sorry to hear about your nails, wonder how long they take to grow back?
Hope everyone has a wonderful week. I will miss reading all your posts and seeing how everyone is doing! Take care.
Thoughts and prayers are with you!
Jane
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Jane- Sorry you will have to catch up on posts, but have fun on your trip, or try too, I know it is work, but maybe fit in some fun. Yes the storm came through 8 inches of fresh very wet snow fell this morning. Fun...not.
Hope Patty and China had good rads today, let us know how it went.
Scans tomorrow. I've never had an MRI, it is the "open" kind so I guess thats better. I just keep praying they are clear!
Love and snowy hugs to you all!
Barbara
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Rad treatments was a little nerve wracking, but it was truly fine. My rad onc wants me to use Xclair cream 3 times a day. It is a little sticky and it gets on my clothes. Hmmm...I will try to figure it out.
Barbara is the MRI that you are having a routine scan? I hope all is well.
China
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One rad TX down, 27 to go! TX was fast and painless, but I still find this radiation stuff mysterious. I got more dots this morning so they can line up the "bolus", a plasticy thing that concentrates the radiation rays on my skin and scar. Because my tumor was just behind the nipple they really want to zap that area and assured me I would get red and sore there. Excellent. At least I have that to look forward to. HA!
China - What is Xclair cream? Is it prescription? Maybe we were getting our first rad TX at the same time!
Barbara - Take deep breaths...the MRI will be over soon and it'll be smooth sailing from here on. Stay warm!
Jane - Hope you have an excellent trip. We'll miss you!
Patty
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Patty- Yea glad the rads went so well. Yes I found it quite mysterious too, thought there should be something sparkly, or lights but zip zap, and you are done. I like your new tx line in your signature, very nice. Yes I can't wait to get this MRI and CT done, clear clear clear!
China-One down and now you know whats up! It will fly by! Xclair huh? I haven't heard of that one. Mine was big on daily Eucerin. Trust me you will know what's best... listen to your skin.
To both of you drink lots of H2O keeps the skin hydrated and really does cut down on the fake bake!
Oh and the CT and MRI are post chemo stuff, but the MRI is primarily for my onc to take a look see why the numbness is worse in one heal than the other, he suspects a pinched nerve in my back, probably from a car accident I was in 20 years ago. I guess Taxol looks for weaknesses in your nerves and exacerbates a problem we would never feel otherwise.
Deep Breaths and clear scans.
Love
Barbara
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Geez Barbara , a pinched nerve in your back, ouch! Taxol exacerbated it. Taxol sucks!
Xclair is a prescription and it costs $40 even with my very good prescription insurance. I googled it. It seems very popular and online they say it has great results. I am just following doctor's orders.
Have a great day.
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YAY! I have a fractured rib!!
The bone scan definitely showed a hot spot but I got calls from my regular dr. and the cancer center today to tell me - "No signs of cancer in the bones!"
So I am rejoicing over a fractured rib. Don and I were preparing for the worst... glad we don't have to deal with that now.
The stress fracture came supposedly due to weakened bones from chemo --- so do be careful sisters, and don't do heavy weight lifting for awhile. I was painting a cabinet - so you know my bones were very weak to merit a fracture from that. 6 weeks recovery and I've already done 2.
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Oh Vickilynn, how funny (sort of) that we can celebrate fractured ribs! After sustaining 12 of them in a car accident last year I know how painful they can be. But isn't it strange that compared to the spectre of bc recurring, anything else is good news?? Glad to hear your news.
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Hello Ladies
It has been along time since my last post. I can't even remember when it was. I have been so busy between work, visiting colleges with my son and a 9 day vacation to Florida I don't know if I'm coming or going. I just spent a hour reading everyones posts. It felt great to hear about how everyone is doing.
My hair is coming in pretty good but not to happu about all the grey. I was a bottle blonde before and it is sooo different. I am thankful that I don't have to wear hats anymore so I'll take the good with the bad. The tamoxifen is causing some flushing and hot flashes but I hope in time my body will get use to it.
It seems many of you are doing radiation and I will you in my prayers and think positive thoughts.
I better get back to work or I'll get behind again.
THINK POSITIVE
Catherine
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Oh Catherine, what an exciting time. I loved touring colleges with my twins. They are college freshman. Have you checked out collegeconfidential.com? I was all over it.
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Hey ladies-
VickiLynn- congrats on the rib, I know it is awful, but no cancer is great!! Gentle hugs for you.
Catherine- wow have you been busy. When your kids get into college don't forget ratemyprofessor.com there can be so garbage posted there but you can get a feel for how some professors/instructors are and know which classes to take and which ones to avoid. I know what you mean about the grey, but i will take hair too!
I got the call from my oncs office today, my MRI and CT were all clear!!!! Woo Hoo. The day at the hospital yesterday was a real challenge, broken machines, big delays, they didn't have any one to remove my port access that had been put in for both tests, had to run over to the chemo room to have it removed etc.. etc.. but it was all worth it to get the all clear. I just stayed really positive, prayed, thought of you ladies, and was REALLY polite to everyone, no point in crabbing up their day too!! Anyway, I see my onc Monday, and I suppose that is to get my deportation appointment and my tamox prescrip. My heels are still asleep, so I would guess it is all over.
Thanks for staying positive with me!
Hugs
Barbara
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Seems like good news all around! Congrats on "only" having a broken rib, Vickilynn. Hooray for clear scans and the end of chemo, Barbara. Good to hear you are so busy, Catherine.
No big news from me. Three rads down, 25 to go. I'm getting in the groove of it and no longer find the whole process so strange.
Patty
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Good Morning
Started snowing here about 5am in NJ. I never want to see snow again!
China- No I haven't check out that site but I will today. Thanks
BarbAnne- I will tell my son about the website- Congrats on the all clear!!
Patty- Glad to hear your getting the hang of rads. Hang in there
Everyone have a great day
THINK POSITIVE
Catherine
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What happy days we are having! Congrats for all the clear tests and so happy to hear! I was told that daffodils are starting to come up here in PA.....our special Spring is just around the corner. Working like crazy these days and have some tired nites,....but nothing to hold me down for long....I imagine it's an SE from Rads....No more burning feeling on my breast. Everything is going well. It is wonderful to hear everyones lives are heading in a welcome direction!
Gotta make snow pies for dinner haha...nah ....maybe just some soup!
Night all.....sweet dreams!
Melinda
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Oh....btw....maybe the 1st day of Spring should be our celebration day! March 20th....It's a Saturday....any other ideas or a different day?? Let's get a plan together...Jane will you be back by then??
:-) Mel
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China - saw your post on rad site...positive thoughts and prayers for you...that new rx does the trick for your skin issues
Had first rad tx today, uneventful, lets hope they stay that way...27 to go... my rad onc says put nothing on skin unless they advise. They'll give me what they want me to use if & when needed - I'm tempted though - to use the aquaphor over night for hydration...and wash off before treatment...also starting my red wine routine tonite - to minimize skin toxicity - we'll see...
Had PT appt this week as well, very informative re: gently skin massages to promote lymph drainage away from affected arm and gentle stretching exercises for tightness in axilla - supposedly fascia starts to tighten around 2 months post op...the things 'they' don't tell you..
So many blessings in disguise with BC - while very sad to hear fellow bc sister from chemo in June now going home on hospice, in the same week contacted by a couple girls locally with bc - feel blessed to be able to share experience, to support them, and vise - versa...has sort of re-routed my bc energy!
Hugs, Love, and prayers to all!!
Di Di
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Didi...My rad dr also said to use nothing and so I did...no problems at all...Towards the end he also said I could use "Bag Balm" that is has burn healing herbs etc. So I did when it got stinging on occasion. Never used the Aquafor they gave me. Enjoy the red wine! It tastes so good to the tastebuds after chemo... I did as well, but towards the end...just didn't keep up with it everyday and still no problems. Hang in there...you'll be done in a blink! :-)
Mel
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Thanks Mel for the reassurance!
Seems crazy that this has been going on for 8 months - Actually 'all of this' has become 'normal' for me...Will probably be weird when I don't have frequent appointments and 'milestones' to schedule!!
I'll find plenty to do with my new 'freedom' though - And will surely try not to take those days for granted:)
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Wouldn't it be great if these rad Oncs all had the same recommendations? Mine encourages me to use something everyday...in fact, three times a day...to keep my skin hydrated. They originally recommended Aquaphor, Calendula cream, and a spray called Solar Recovery. The literature they gave me said not to use anything but those. Then, this morning, I was told to use anything I felt would help. The only thing they haven't mentioned is red wine...which sounds much more fun than any of the gooey creams!
Another controversy seems to be whether your skin type affects how you're skin will react. I had read that because radiation is different than sun exposure, fair skinned people who burn easily in the sun (me!) don't necessairly have more radiation skin reactions than people with darker complexions who don't burn or freckle in the sun. Then...this morning I was told exactly the opposite!
Di Di - Congrats on getting your first rad under your belt. I have 5 down and 23 to go. Also, I hear you on the length of the treatment for BC! I was diagnosed about a month before you and we both did the 24-week AC/Taxol regimen...now rads...long grind! I didn't have an MX though so I don't have the reconstruction to go through. And I suppose you have Herceptin as well as the hormone treatment...hang in there!
Melinda - Thanks for the encouragement. My first week of rads did fly by!
Patty
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http://www.dotmed.com/news/story/10091/
I have the research article on the red wine thing, can't find it right now, but here's a link to an article that references the research.
Less incidence in skin toxicity of those who drank only one glass of red wine daily (I'm figuring that to be 6 oz) so that's what I'm trying
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Hello SOSisters...finally home, been a long but informative and enjoyable week! Glad to hear everyone is doing well. Will post more this weekend! Missed you all!
Thoughts & prayrs are with you!
Jane
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Today, I read the other Sept 09 thread and the topic of BRCA testing came up. I am not sure I want to be tested. I am wondering whether the ladies on this thread have been tested or are considering being tested. I would love to read your thoughts on the matter.
The National Cancer Institute's website has an interesting FAQ about BRCA testing.
http://www.cancer.gov/cancertopics/factsheet/Risk/BRCA
What does a positive BRCA1 or BRCA2 test result mean?A positive test result generally indicates that a person has inherited a known harmful mutation inBRCA1 or BRCA2 and, therefore, has an increased risk of developing certain cancers, as described above. However, a positive test result provides information only about a person’s risk of developing cancer. It cannot tell whether an individual will actually develop cancer or when. Not all women who inherit a harmful BRCA1 or BRCA2 mutation will develop breast or ovarian cancer.A positive genetic test result may have important health and social implications for family members, including future generations. Unlike most other medical tests, genetic tests can reveal information not only about the person being tested but also about that person’s relatives. Both men and women who inherit harmful BRCA1 or BRCA2 mutations, whether they develop cancer themselves or not, may pass the mutations on to their sons and daughters. However, not allchildren of people who have a harmful mutation will inherit the mutation.What does a negative BRCA1 or BRCA2 test result mean?How a negative test result will be interpreted depends on whether or not someone in the tested person’s family is known to carry a harmful BRCA1 or BRCA2 mutation. If someone in the family has a known mutation, testing other family members for the same mutation can provide information about their cancer risk. If a person tests negative for a known mutation in his or her family, it is unlikely that they have an inherited susceptibility to cancer associated with BRCA1 orBRCA2. Such a test result is called a “true negative.” Having a true negative test result does not mean that a person will not develop cancer; it means that the person’s risk of cancer is probably the same as that of people in the general population.In cases in which a family has a history of breast and/or ovarian cancer and no known mutation inBRCA1 or BRCA2 has been previously identified, a negative test result is not informative. It is not possible to tell whether an individual has a harmful BRCA1 or BRCA2 mutation that was not detected by testing (a “false negative”) or whether the result is a true negative. In addition, it is possible for people to have a mutation in a gene other than BRCA1 or BRCA2 that increases their cancer risk but is not detectable by the test(s) used. -
China - My Onc referred me for BRCA testing but he said there is no hurry, so I haven't done anything yet. The paperwork I got outlined the following criteria for when the test should be considered...
- BC in two or more primary relatives (such as Mother and Sister)
- Early onset of BC in family members (pre-age 50)
- Family history of BC in more than one generation
- BC in both breasts of family members
- Frequent ovarian cancer in family members
- One or more relatives with positive BRCA tests
- Eastern or Central European Jewish ancestry with history of BC or ovarian cancer
It is not made clear whether meeting one of the above is enough to consider testing, or if you need to have more than one factor present. I'm still undecided. But on the other hand, how could it hurt?
Patty
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Good evening ladies.
Melinda - Congratulations on finishing radiation treatments. I am glad everything is going well for you.
Barbara - Congrats on your clear scans and finishing chemo. That is wonderful news.
Vickilynn - I am happy for you that it is a fractured rib and not something worse. Take care of your rib and wishing you a speedy recovery.
To all doing radiation - I hope it is easier than chemo (from what I have heard) and that you won't suffer any side effects.
Chinablue - Early on I had the BRCA testing done b/c I was adopted so don't have medical history and because of my age when diagnosed (a few weeks before my 40th birthday). Mine came back negative for which I am glad since I have a biological sister and two nieces.
I was feeling pretty good after my surgery on Feb. 2 and was "proud" of myself that I was able to stop taking pain meds a couple of days and was back to work two weeks after surgery. Yeah, well I think I was too optimistic. I have been feeling down the last couple of weeks and met with my onc. on Tuesday. She was surprised I went back to work so soon and told her I was experiencing more pain the last two weeks than the two weeks before. She said I was numb after surgery and now my nerves are awakening; well, I want to back to being numb. Someone on the February Mastectomy board explained what I am feeling perfectly: SOS pads rubbing against my skin. I am also experiencing what I call lightning bolt pains throughout the day. I have gone back to occasionally taking pain meds to sleep at night or if the pain is too much when I get home after work.
Question: anyone else experiencing achiness/heaviness/pain in their legs? I had some neuropathy in my feet during Taxol, but I thought it had dissipated. I am wondering if it is a side effect from chemo even though I am a couple months out. I talked to my onc. about it, but she didnt' seem too concerned, so I guess I shouldn't be either, but it is a pain.
I also got my prescription for Tamoxifen and mailed it in,so I should be getting that within the next few days. I am anxious/nervous about taking it b/c of side effects and long-term use. I have heard from other ladies who have taken it without any problems, so I am hoping I am in that group. I guess I will take them and I can always stop if it affects my QOL. Anyone taking the test which is supposed to tell if you are a good metabolizer or not?
Also, went to the dentist on Thursday (first time post-chemo) and was told I was grinding my teeth, which is causing my jaw pain. She wants me to be fitted for a guard and get this, it is $750!! and not covered by insurance. On top of that I was told I had three cavities!! I am definitely blaming it on chemo.
Sorry for the tone of my post; don't mean to be a downer. I feel like I should be happy that I have come so far, but some days it's not so easy. Thank you all for "listening" to me; I feel like you gals are the only ones who understand. Hoping everyone a restful weekend.
Love, Holly
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Oh Holly,
How intense are the lightning bold pains? I have what I call mild electric shock sensations that run throughout my body ever since the second taxol treatment. I am now 4 weeks out and still get them about one an hour on average. My onc said he never heard of it before and just shrugged his shoulders. Is that what you are feeling or is it really painful?
The achiness/heaviness/pain in your legs sounds awful. I have lingering neuropathy (numbness/tingling), but nothing like what you describe.
Please call your onc/internist. QOL MATTERS!
You don't have to worry about being a "downer" here. What you are describing would make Arnold Schwarzenegger whimper.
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mspatty,
I don't meet any of the criteria that you mention for the BRCA test. Still, my onc suggested that I have it done.
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Chinablue - Thanks for your encouraging words; I think what I am feeling is "normal" for someone whose had a mastectomy recently? Someone told me that my legs might feel better, if I started exercising again?! Really, I barely have energy to go to work; okay, I am not venting, trying to stay positive.
In regards to the BRCA testing, does your cancer center have a genetic counselor? I met with one before I had the test done and before I met with her, she sent me a detailed questionnaire. She used that to run some kind of program that gives the likelihood of you having the gene; I think I remember her giving me some percentage, but was incomplete b/c I didn't have family history. If nothing else, during my meeting with her, she went into detail about the whole process and gave me some good information. Afterwards, she went over the cost and if it was covered by insurance and what my maximum out-of-pocket expense would be. I was surprised they only needed a blood sample. Maybe you can meet with one before doing the test? Sorry if I am telling you what you already know.
In regards to hair growth, a co-worker yesterday told me that my hair must be coming in since she sees that I am getting what looks like a sideburns and hairs in my jaw area; she said it looked like I was growing a beard?!!!!
She started kind of laughing and I just stared at her. And then she says Just kidding; like that makes it better. Ellen DeGeneres said something about kidding during her stand-up: "That's like these people when they say something, like that's insulting and they end it with "kidding"...as like it erases...-hey did you get a hair cut? Hope you didn't pay for that thing..I'm just kidding. Well then you don't know how to kidd properly cause we've should both been laughing." Okay, I am really done venting; taking a page from Catherine and thinking positive!
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China - Like Holly I am adopted. I wanted the test because I think knowledge is power. Yes, it is scarey. And I am nervous about the results. But, I would rather live life with no ovaries knowing I am predisposed to having ovarian cancer (a silent killer). Ovarian cancer has NO symptons. Also, one of my ovaries was removed when I was 15 due to cysts. So really it would be just removing the other one and the fallopian tubes. Regarding getting a masectomy, because I have been reading all these brave women's accounts I know I can make it through. I would definitely have reconstruction because I still consider myself a young woman.
If you have the opportunity to have the test you should strongly consider it.
Anita
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