Starting Chemo April 2009
Comments
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Has anyone heard from Lena recently?
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The system shows she was last online on this site on 12/1. I've been checking. No word, no. I hope she is resting comfortably at home. I have confidence in those hospice nurses and her PR.
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Good morning all, I just came by to see if Lena had been here. I hope she is ok and managing to get some rest.
Titan, I agree with everything you wrote, Cancer sucks!
Betsy, how are you doing this week?
Sending you all hugs, Judy x
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I don't know if we are going to hear from Lena....this sucks.
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Agreed Titan - very hard not to know
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I keep checking for her as well.
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Hi all, it looks like we may not hear from Lena, it is very hard. At least there is some comfort in knowing that we are all thinking about her and hoping that we hear from her. We need to take strength from one another and just hope that she is ok and is managing to rest.
Hope you are all ok, Betsy, please let us know how you are doing.
Hugs to all, Judy x
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Hi all,
I'm healing slowly and feeling better each day. Went out for my first drive yesterday. I was pretty sore last night, otherwise I'm fine.
Tomorrow I go in for a Nutrition consultation. I won't go on AI's and don't really want to back on tamox. so I'm hoping that maybe with guidance on nutrition I may avoid further cancer. I'm sick of the SE's with hormone therapy. I'm thinking of not starting back with them. I've followed the protocol to this point but I've been battling one SE after another. I'm tired of it and may just go natural. I have an appt. on Monday with my Med. Onc., it should be interesting.
Betsy
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Betsy, glad to hear you are healing. It's difficult when it's so slow but progress is progress. I understand what you mean about the ongoing side effects and wanting to avoid more.
i keep checking for signs of Lena....
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Betsy, thanks for coming by and letting us know how you are doing. Good to hear that there is progress. Let us know how the consultation goes with the Nutritionist. It could be a good way to avoid SEs. I totally get how you don't want or need any more of those!
Lena, sending you positive thoughts.
I will come by again soon, (((hugs))), Judy x
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I, like all of you, have been hoping to see a post from Lena, but she has not signed on since Dec. 1 and that is unlike her. I am hoping that she is resting and pain free, and trying to reconcile myself to the fact that we may never know what happens. But, that is our Lena and she will do it "her way" as she has always stayed true to herself. Peace, Lena.
I also know that she would be so pissed to think we were all moping around this board, wishing that we would hear from her - can you just imagine what four letter words she would be putting up here
.So - in honor of Lena, I am going to try to continue our support of each other, and I hope you all can do the same, otherwise I fear we will all drift away in our sadness.
I had my oncology follow-up this week, and although the onc seems to think my thyroid is enlarged and has ordered some blood work to check it, everything else seems to be ok. With Her2 pos, the riskiest time is the first three years for recurrance. I will have three years under my belt in February, and I then graduate to 6 month check ups (up till now, it has been 4 months). I do not, however, subscribe to the "home free after three" mantra - I say, one hurdle down but no guarentees.
My throat is finally feeling better - went to ENT last week and suffered through a tube being passed down my nose (Ugh!) so he could see my second set of tonsils and remark how awful they looked (who knew we have two sets of tonsils - my regular ones were taken out as a child, and when he started talking about tonsillitis I thought that I had hit the jackpot of incompetent ENT's - however, once he explained the second set (at the base of your tongue), and how my immune system has not fully recovered from chemo, and that after a bacterial infection (which I had ten days before this), can cause this tonsillitis (Betsy - you are queen of SE's and I take the title for weird diagnosis). It is rare, but oh well...ten days of antibiotic (Avelox which did a number on my stomach), my sore throat is all better, however I am still hoarse.
Tomorrow is my GYN appointment and January 3rd is my colonoscopy - could the holidays be any merrier? LOL
Betsy - I'm happy to hear you are making progress in your recovery.
I'm all typed out, but I send love to all..Lena rest easy
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Geri
You are exactly right in what you wrote above. Thank you for sharing your wisdom, and so eloquently.
I had a terrible problem with my larynx about 20 years ago - had to have those tubes up my nose. It was AWFUL. I lost my voice for several months - my then-husband said it was the best time of our whole marriage. (LOL - I can laugh at that!) Anyway, it did finally get resolved, but I am still very protective of my voice - I don't scream or yell, drink a LOT of water and don't go anywhere near smoke. That's the advice the ENT gave me.
But I know how uncomfortable that procedure is - I'm sorry you had to endure it. Glad you are feeling better though. And two sets of tonsils - who knew? I had mine out as a child also. Everybody did back then. Now they don't do it as routinely.Made my appt for mammo in early Feb. Decided, now that it is scheduled, to put it out of my mind until much closer. No sense taking three months to worry about/dread it, right?
In the meantime, I am going to try to relax and enjoy the holidays. Lots going on ,but I am working HARD to keep it SIMPLE and not burden myself with too much. The whole point is to enjoy family/friends, right? Not to set the perfect table, have elaborate meals, spend too much on gifts etc etc. So I am WORKING on that - we'll see how I do.
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Geri - Uhgg...sounds like you have as many appointments scheduled in the next few weeks as I do. Sorry to hear your throat is so sore.
I went to a nutritionist yesterday, I loved her. She as put me on a probiotic (Ultimate Flora Critical Colon BifidoMax) for my stomach/bowel issues. She said most likely after chemo my stomach never really got back to a normal flora environment. Also, she said as I've long explained to the medical doctors, I do eat a very high fiber healthy diet. She said she wished all her patients were as knowledgeable about what they were eating. She encouraged me to add more yogurt, increase my calcium from foods and keep up my fluid intake. I am still going to the Gastro Endo. appt. in January. I have a second appt. with her this month to cover foods with estrogen, as I may not continue on my hormone therapy, and discuss the progress I've made with the probiotics and of all things Xylitol or erythritol (sugar substitute) I need to add it to my diet. I normally only cook with brown sugar and don't have much sugar in my diet. Apparently the "ols" sugar substitutes act like a laxative in a lot of people. I wish I would have insisted on this consult right after chemo. I'm so glad I found her.
Judy...I think based on your stomach issues you might want to seek out a nutritionist too. I explained the heartburn and constipation associated with chemo.
Next week my medical onc appt., the following week first exam after surgery with my gyn onc, nutritionist appt. & dental appt.
I plan to try to go back to work part time starting next week. I'm hoping to only work part time for the first few weeks. Given all my doctor appts. it's turning out that I don't have much of a choice in the matter.
I'm a little surprised how good I feel some days and tired the next.
Unless Lena has a turn for the better, I don't expect her back to our board. She knows we support her and are here for her if she needs to vent (assuming she has the energy). She has no choice but to focus on herself right now. She would slap us down in a heartbeat if we got too mushy on her. It makes me smile just to think of what she might say.
Amy...I haven't forgotten, I still need to email you our Olympic itinerary.
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Lena knows we love her whether she likes it or not..I think she likes it...love ya girl.
I like the nutrition speak here..I love eating fruits and veggies..have an apple and banana a day..trying to have alot of broccoli, green beans, asparagus..as much as I can eat..my DH is getting used to it too...my DD laughs about how we never used to have this stuff...I kinda freak out if I don't have my fruit and veggies everyday..I still walk or jog 2 miles per day..plus take alot of vitamins...taking 5000 IU's of D3 per day..trying to push this on my friends..having a good D3 count does seem to matter! Plus green tea.
This is not to say that I'm not BAD..have not given up the wine.and no intention to do so.
I feel good..I feel healthy..at least for now.
Coming up on 3 years soon ladies..! Can you believe we have known each other 3 years? We were so young and scared...look how far we have come
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Geri, thanks for your words of wisdom. I think you are right, Lena would certainly not be happy if she knew were were being all soft on her. I hope she is finding rest and peace in whatever she is doing. Good to hear that your throat is better. I am having a colonoscopy on 10th Jan as part of the routine follow up here. The onc said that as a gene carrier I need to keep an eye on the colon and pancreas too. I had the endoscopic US the other week which was fine. I am seeing her again in Feb. I am still on every four months till I am 5 years out. On the one hand, seems like a long time, on the other, I cannot believe that we are coming up for 3 years! My life is certainly richer for having become a part of this group, that is for sure!
Betsy, I am so pleased that the nutritionist appointment went well. I still have digestive problems, but just try to stay away from the foods that I know will irritate it. I may well think about it, thanks for updating us. It is good that you are having good days, even though you still have tired ones. Take it easy, going back to work will be very tiring at first, even part time. I worry about you!
Titan, your eating and excercise regimen sounds really good!
Amy, I think your approach to the Holidays is a very sensible one. Sometimes we get so overrun with the details, we forget to actually focus on what counts! I am sure it will be wonderful. I remember this time last year, when you wrote that your daughter had come to help you wrap the gifts. Where has the year gone???
That is all from me tonight; Helen, Lena and everyone, sending you all hugs, take care, Judy xxx
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Judy...tell me about this colonoscopy when you are DONE with it.. I need to have one to but I'm too chicken..if you can do it..maybe I can do it too.
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Lena, wherever you are, I wish you rest and peace.
Judy, I didn't know you were also BRCA+ It is a big cloud over our heads. I'm BRCA2+
I've had a couple of colonoscopies over the years. Not fun but necessary. Chemo was worse
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Titan, I will let you know after I have it. I am actually dreading the two days before when I have to eat specific foods and take something to make me go to the bathroom.
Yes Helen, I am BRCA1, definitely a cloud. I have two daughters, aged 16 and 13 and I worry about them too. I think that if I can get through chemo, then I can get through the colonoscopy!
Hope you are all having a great Sunday! Hugs, Judy x
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Judy, I have 3 sons. So far my oldest has been tested and he carries the mutation. That means his children - a boy and a girl and a boy on the way each have a 50% chance of also carrying the mutation. I'm especially worried about the little girl. Her other grandmother, who did not carry the mutation, died last year of breast cancer and 3 of her 4 great grandmothers died of this as well.
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I am BRCA negative, and yet my maternal grandmother, my mother and now me, all have/had breast cancer...so, how much weight do I give the fact that I am negative? Not much. I think there is so much more in the genetics field that they just don't know yet, that all we can do is have our offspring be vigilant, so if, please g-d no, they do find something, it is in its earliest stage. Both my girls (32 and 42) have had screening. The older had a mammo last year, and the younger an MD breast exam and ultrasound, as she has very dense breasts like I do. If you remember, I had negative mammo, negative ultrasound, negative core biopsy, but because of my family history (my mother died at 52 from metastatic bc-of course there were no screening tests back then, and by the time she told me about this "bump" she had on her breast, it had eroded through the skin) - I insisted on a surgical biopsy and removal of what they expected would be a benign area of dense tissue...and the rest is history. As my breast surgeon says, after she got over the shock of the positive surgical biopsy (by the way, I was not shocked...I knew it would be bc), she tells me all the time that I saved my own life. So...BRCA is a warning, but none of us, nor our children, can afford to be complacent. And now, I will descend from my soapbox
Thinking of Lena
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I am BRCA negative. My mother's mother (my maternal g'mother) had bc at a young age (when my mom was about 10) and died within a year of her mastectomy. This was back in the 40's when they knew very little.
I remember when I had my BRCA results, the genetic counselor said that some people are relieved to find out it is negative, but some are relieved to find out it is POSITIVE, as it answers the question as to why there is so much bc in their family history, and allows for more aggressive screening. I didn't understand it when she said it - but Geri, after reading what you said, I sort of see it more clearly. If it HAD been positive, you would at least have known something. Obviously there is SOME sort of genetic link in your family - they just haven't identified that gene yet. The BRCA 1 & 2 are the first 2 they figured out. Over time, I am sure there will be more.
My daughter is 29 and going to the Fox Chase Cancer Center breast cancer prevention program. You join, and they follow you very closely, doing mammos, and MRIs as well, if you have dense breasts. She just had her intake into the program, and felt very secure in their evaluation. I am proud of her for taking this seriously, but so sad that it is something she has to think about, and my younger daughter will as well - she is only 26 now.
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I have not been tested for the BRAC gene...my paternal grandmother died of BC but she was the only one in my family to die of any cancer..I have 2 paternal aunts..one died at 89, the other one is 87 and perfectly healthy..just one female cousin on that side and she is older than I am and no cancer at all...I dunno...I talked to my daughter about having the test and we talked to our doctors...we have decided that my daughter needs to be diligent...but at this time we are going to wing it...I am going to insist on an MRI for her..if I have to pay for it myself...Mammograms just don't work on dense breasts...and that is what I have..and she probably does too.
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In my family, my mother died of bc as did several of her first female cousins. Then from that group of cousins, many of their daughters were dx with bc and there were also some deaths. So, because there was so much bc in our family, and then my own first cousin was dx with bc ... she did the BRCA test which came back positive and then her daughter also had a BRCA test which was positive. ....the docs were sure that I would also be BRCA2+ which I was. This also puts us a greater risk for ovarian, melanoma, and pancreatic. So despite getting ovaries removed, the odds for the long term are not good for those of us who are BRCA2+ The BRCA1 is slightly different. And then there is a strong belief that there is probably a BRCA3 or BRCA4 that have not yet been identified but are probably there. It's not just breast cancer. The men in the family have been affected by other cancers - all related to BRCA2
On another note, my youngest son got engaged this weekend. No wedding details yet. My future DIL is a lovely girl and they are very happy together.
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Helen, wonderful news! Congratulations to you and all your family!!!!!!
I know that we all have to be aware of the risks in our families. When my sister was diagnosed, several years before me, I began more stringent screening which ultimately led to me finding my cancer very early on. Once I found out I was BRCA1+ (which was a year before my BC diagnosis), it began to emerge that several cousins on my father's side had died of breast cancer. My sister did not do the genetic testing, which is a worry to me, but she has regular checks and has had her ovaries removed, which is something.
My MIL had BC four years ago, did the genetic testing, was BRCA negative and now has Ovarian Cancer. Her mother, also had BC for many years, so I think as you have all said, we just need to be diligent in our screening, and there is still so much to be learned about the genetics of the disease.
Betsy, how are you feeling? Lena, thinking about you.
Hugs to you all, Judy xxx
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Congratulations Helen...wonderful to hear good news!
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Hi all,
Had my appt. today with my medical onc., he wants me to have the genetic test for Lynch Syndrome. If positive, I'm at a higher risk for colon cancer. Apparently, uterine cancer/edometrial cancer, bc & colon cancer are linked. Jeesh...will this ever end? I have an appointment scheduled for Jan. 19th for genetic counseling. No one else in my family has had bc but my family does have a history of uterine ca.
Titan & Judy...I was going to tell you a colonoscopy is a breeze the worst part is the prep. I was feeling smug thinking I don't have to have another one for 7 years. BUT...if I'm positive for Lynch Syndrome then it will be an annual exam for me....OH JOY! What a difference a day makes.
I'm starting on my tamoxifen again, I have three more years for sure. Now the onc says there are stats that additional 5 years on it might be very helpful. They keep moving the target time out. Sometimes I wonder if this is the way drug companies keep up their bottomline? I refused the AI's based on SE's. My onc said I've already had the worst possible SE on tamox, so I might as well stay on it. Based on the stats...I figured I will stay on it because I certainly don't want a repeat of the past two years.
Helen...congratulations!
Tomorrow I head back to work part time. I've enjoyed this past week of recovery, I've had pretty decent energy although I can't lift or exercise (other than walking) for two more weeks. I plan to ease into work through the rest of this month. I just don't have the energy to do otherwise. This surgery really set me back physically.
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Betsy, thanks for the heads up on the colonoscopy, you really have a lot going on! I hope that your return to work goes smoothly and that you are able to take it slowly and not tire yourself out too much. At least you have the Holidays to enjoy this month.
Hope everyone is doing ok today, hugs to you all, Judy x
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I read about the Lynch Syndrome online - never heard of it before. It is very interesting to me that they are developing these ways of understanding how/why certain cancers run in families. I think society is still figuring out what to do with the information - whether it helps or hurts to know it. Of course we want to know because it helps with screening and we are already 'in the system'. But for those who have not yet had a cancer diagnosis, the knowledge can be very difficult to live with. A friend of mine (my age) and her daughter (my daughter's age - 29) both got a BRCA+1 dx and have struggled with it - feel like they are just waiting to get cancer. I think about this with alzheimer's testing as well - if you could take a test to see if you were going to develop it, would you want to know? I don't think I would.
All this science is, in some ways, getting ahead of the human capacity to manage/digest it. I think it is all going to take some time to absorb and figure out what to do with.
In the meantime, Betsy, I hope you do not have this syndrome. Please keep us posted. Also, I found my appt with the genetic counselor very educational - I hope you learn some good info as well.
Love to all.
And Helen - congrats about the engagement. Good news makes our hearts glad - and there is nothing like a wedding!
Amy
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Had my regular appointment with MO today. By the time I had blood work, etc. and saw her, seemed like a whole afternoon. Anyway nothing new but don't have blood results yet. I try not to think too much about it all but impossible not to get a little bit anxious.
I agree. Weddings and babies are wonderful things to look forward to and I am lucky enough to have both right now.
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Helen, glad the appointment is behind you. I completely understand the anxiety, but please let us know when you get the blood results.
I am already anxious that they will find something when I have my colonoscopy, which I suppose is normal, but I know that the procedure is only routine and is to be on the safe side. This brings us back to the genetic testing question which Amy was talking about.
On the one hand it is good to know, as it was in my case, probably saved my life. But, I have a friend who has discovered that she is a BRCA+2 and is now having an elective mastectomy and reconstruction. This was one of the recommendations made to me when I did the testing, however, I said "There is no way I am having a mastectomy!" (Who knew...?). She feels like she is a ticking bomb and is spending most of her time now in a state of panic, waiting to become sick with BC. I told her that being a gene carrier does not make her sick, but right now she is so focused on getting a date for surgery. There is a waiting list and she is not a priority which she is also having trouble coming to terms with. The doctor said he will do it as soon as he can. So, it definitely changes our perspective on life when we find out, however, I only did the oopharectomy when I got my results.
I hope Lena is ok and managing to get some rest. I miss this time of year in the US, I always found the Holiday Season so festive and beautiful!
Betsy, hope work was ok.
Sending you all hugs, Judy x
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