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Post by purvis on Mar 3, 2017 14:59:24 GMT
tiffany: There are a lot of folks on this blog who are hoping and praying that your CT is great and that your travel plans are not in jeopardy once again. THINK POSITIVE. Purvis
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Post by tiffany on Mar 3, 2017 17:32:01 GMT
Thanks Purvis. The waiting will be hard, but I feel good. I’m hoping for the best so that I can be done with chemo, at least for a little while!
I’m starting my countdown to Croatia (less than two months!), but I’m still waiting for Trafalgar to post their optionals, so that I can read about all of the places the tour goes. They usually have their optionals posted by now, and I’m not sure what’s taking them so long! I don’t think I’ll have to cancel my trip this time around. I already told my doctor that I won’t be cancelling unless it’s life or death, and when I told the new Fellow about my trip, he said it was a good thing I was travelling, and that he couldn’t see any reason for me not to be able to go.
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Post by purvis on Mar 3, 2017 18:13:46 GMT
Tiffany: Sounds like this new fellow is a real confidence booster.
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Post by Tulips on Mar 8, 2017 21:58:14 GMT
This just stresses the importance of doing self checks. I'm undecided on a mammogram myself. I've hit an age and the doctor suggested it, but I'm seeing mixed opinions for benefits for my age group according to the Cancer Society. Tulips.........please go! If nothing else a mammogram will establish a base line and they can measure any future changes accordingly. Please don't cross your fingers that any age group is a safe group, cancer doesn't care about your age. A mammogram is one of the easiest medical tests to go through and will only take minutes of your time, with minimal discomfort, if that. So I went. Got my results, which was that everything is fine. The procedure was fine, but I found the waiting after very stressful especially after a friend who went got a callback.
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Post by tiffany on Mar 9, 2017 12:22:56 GMT
I’m glad you went for a mammogram Tulips and that that results were good. The waiting is very stressful! Also, just because your friend got a call back, doesn’t mean that they found anything. Some women have dense breasts, which means a mammogram won’t pick up on anything. She may need an ultrasound.
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Post by Tulips on Mar 9, 2017 16:38:21 GMT
I’m glad you went for a mammogram Tulips and that that results were good. The waiting is very stressful! Also, just because your friend got a call back, doesn’t mean that they found anything. Some women have dense breasts, which means a mammogram won’t pick up on anything. She may need an ultrasound. They did say not to panic if I gut a callback since this was the first one I had and it's very common. My friend went back for a diagnostic mammogeam and it turned out she just had calcif cation.
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Post by Boop on Mar 9, 2017 17:51:53 GMT
Tulips.........please go! If nothing else a mammogram will establish a base line and they can measure any future changes accordingly. Please don't cross your fingers that any age group is a safe group, cancer doesn't care about your age. A mammogram is one of the easiest medical tests to go through and will only take minutes of your time, with minimal discomfort, if that. So I went. Got my results, which was that everything is fine. The procedure was fine, but I found the waiting after very stressful especially after a friend who went got a callback. That's odd that you had to wait for your results. Mine have always been mailed to both myself and my doctor. The whole process start (gown on) to finish (gown off and out the door) has taken about 30 minutes +-. Wonder why they made you wait?
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Post by Tulips on Mar 9, 2017 19:21:09 GMT
So I went. Got my results, which was that everything is fine. The procedure was fine, but I found the waiting after very stressful especially after a friend who went got a callback. That's odd that you had to wait for your results. Mine have always been mailed to both myself and my doctor. The whole process start (gown on) to finish (gown off and out the door) has taken about 30 minutes +-. Wonder why they made you wait I meant the waiting days for the results. They said the letter in the mail takes 3 weeks. The doctor would call sooner if something showed up. Otherwise it was 'no news is good news'. I called because I really didn't know when no news meant there really was no news.
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Post by Tulips on Mar 9, 2017 19:23:39 GMT
I'm not good at waiting.
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Post by purvis on Mar 9, 2017 23:35:47 GMT
Results: For some reason both in Ont. and BC I had to wait up to two weeks to get a letter with the results but here in Alberta you just sit in a waiting room for about 10 minutes and a doctor reads the film and you are given the results before you leave. It sure is much better than the mail results. Purvis
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Post by Tulips on Mar 10, 2017 0:50:19 GMT
Results: For some reason both in Ont. and BC I had to wait up to two weeks to get a letter with the results but here in Alberta you just sit in a waiting room for about 10 minutes and a doctor reads the film and you are given the results before you leave. It sure is much better than the mail results. Purvis I agree. This method is do much better. I wish they did this everywhere.
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Post by tiffany on Mar 10, 2017 12:19:32 GMT
When I went for both of my mammograms, they told me that they would be sending my results to my doctors. They never mentioned mailing my results to me. When I called to get my results, as the doctor who referred me for my first mammogram was on vacation, they told me that they couldn’t give me my result, and that I had to wait to see my doctor. I then arranged for them to send my results to my family doctor, as I didn’t want to wait for my other doctor to get back from vacation.
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Post by tiffany on Mar 10, 2017 12:21:59 GMT
I hear you! I’m tempted to call my doctor’s office in order to get my CT test results, as I don’t want to wait until next Tuesday. At the same time though, if it’s bad news, I don’t want to ruin my weekend, so I think I’ll wait until next Tuesday. The waiting is the hard though!
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Post by purvis on Mar 10, 2017 14:54:55 GMT
Tiffany: I'm not great at waiting for test or x-ray results but like you I am anxious for the results . I guess that is what's called between a rock and a hard place. The only way to get through this weekend is to keep busy if possible. Here's hoping that your results are much better than you hope for and that you can start packing. Purvis
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Post by bet on Mar 10, 2017 16:20:04 GMT
The waiting game is a hard one - Wishing you good news for Tuesday Tiffany
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Post by tiffany on Mar 10, 2017 18:42:45 GMT
Thanks. I am going to keep busy this weekend, and Tuesday will be here soon enough. I just hope it’s good news so I can stop taking chemo! Even if I have to continue with the chemo for another three months, I’ll get a break when I got to Europe. I’m just anxious to be done with it as the side-effects seem to last longer with each treatment. The shortness of breath is getting so bad that I can’t even walk up a flight of stairs without stopping to take a break. I still walk though as I need the exercise. The steroids and lack of exercise have caused me to put on 20 pounds in the last year, which means I need to keep moving. I have a pedometer and aim to get between 10,000-15,000 steps a day. This may seem like a lot, but, for me, it’s not as I used to get between 15,000-30,000 a day before my diagnosis. It’s better than nothing though.
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Post by Boop on Mar 12, 2017 21:37:04 GMT
Thanks. I am going to keep busy this weekend, and Tuesday will be here soon enough. I just hope it’s good news so I can stop taking chemo! Even if I have to continue with the chemo for another three months, I’ll get a break when I got to Europe. I’m just anxious to be done with it as the side-effects seem to last longer with each treatment. The shortness of breath is getting so bad that I can’t even walk up a flight of stairs without stopping to take a break. I still walk though as I need the exercise. The steroids and lack of exercise have caused me to put on 20 pounds in the last year, which means I need to keep moving. I have a pedometer and aim to get between 10,000-15,000 steps a day. This may seem like a lot, but, for me, it’s not as I used to get between 15,000-30,000 a day before my diagnosis. It’s better than nothing though. Hi Tiff! I've been following along with your progress and wish you nothing but positive results coming up Tuesday and as you go forward. My daughter got me a Fitbit for Christmas and it is the best gift I could have ever received. I went from being a couch/computer potato with perhaps 4500+- steps per day to 15,000-17,000 per day. I have just reached 1,013,000 steps since December 27th, a total of 725km and have lost 6 more pounds and encourage you to keep walking. Believe me, I know how hard it is to commit to walking everyday but this Fitbit is a super motivator!! I also bought myself a Nordica treadmill in October, so do daily sessions on this to supplement my walks. This might be something for you to think about on those days that you just don't want to walk especially if its cold, raining or miserable outside. Take good care of yourself!!
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Post by tiffany on Mar 13, 2017 11:28:55 GMT
Thanks Boop. I’m glad you got a Fitbit and are using it. 15,000-17,000 steps a day is a lot, and I’m glad you’ve lost 6 pounds. I hope you keep it up!
Once I’m done chemo (and steroids), I’m hoping I’ll be able to go back to the gym and playing badminton, which should help me to lose some of the weight I’ve put on. As, I usually lose 2.5 pounds during my break week, because I don’t get steroids that week. It’s mostly water that I lose, and it comes back on as soon as I get steroids again.
I hope to get my test results tomorrow, and am hoping that I will get to finish with chemo at the end of March as originally planned. I have a feeling, however, that I’ll have to keep getting chemo until the end of June.
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Post by Boop on Mar 13, 2017 18:30:36 GMT
Thanks Boop. I’m glad you got a Fitbit and are using it. 15,000-17,000 steps a day is a lot, and I’m glad you’ve lost 6 pounds. I hope you keep it up! Once I’m done chemo (and steroids), I’m hoping I’ll be able to go back to the gym and playing badminton, which should help me to lose some of the weight I’ve put on. As, I usually lose 2.5 pounds during my break week, because I don’t get steroids that week. It’s mostly water that I lose, and it comes back on as soon as I get steroids again. I hope to get my test results tomorrow, and am hoping that I will get to finish with chemo at the end of March as originally planned. I have a feeling, however, that I’ll have to keep getting chemo until the end of June. Thinking good thoughts for you Tiff!!
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Post by purvis on Mar 14, 2017 2:47:50 GMT
Tiffany: Your in my thoughts and prayers . May your results be all that you wish and hope for. Purvis
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Post by tassiedevil on Mar 15, 2017 4:05:05 GMT
Yesterday was my 3 weekly appointment with my oncologist. We had a long discussion about the treatment. If I went straight back on it there was almost a definite possibility the enteritis (inflammation of the small intestine) would flare up again. We then discussed ways to reduce the likelihood of it flaring up, which included lowering the dose (which then had the side affect of would the drug actually be affective at all?) the old fashion way to receive chemo (which as Tiffany would know has a multitude of other side affects). In the end she said due to my total pathological response to the treatment last year that she would recommend not continuing with the treatment as in the end it would probably do more harm than good. So on that advice I decided not to continue with the chemo. We then discussed what follow-ups I had with the surgeon and was able to show her the 5 year plan of tests and checkups he (the surgeon) had drawn up for me.
Being in the minority, having a complete pathological response to the treatment she asked if I wanted to be involved with research into a link with aspirin and reduced occurrence and reoccurrence of cancer. Which I was happy to sign up for, at the moment it is to only get more information about the research and then make a decision to join it or not. Once everything was discussed she said there wasn't anything else she could do for me, but made sure I had all her contact details if I find I have anymore questions or worries and her parting words were "I hope, professionally I never have to see you again". Which I concurred!
It will be several more weeks before all the chemo drugs are out of my system so will have the side affects for some time to come but will lessen with each day. I will still have pain and discomfort from the enteritis for another 3 months or so, but worse case scenario could be out to 18 months before I get over it entirely.
So now I've just got to work on getting rid a skin infection I've picked up near but not on the surgical wound. Then hopefully I won't need to have anymore visits to doctors until 10 July when I have the next appointment with the surgeon to discuss the results of the tests I will have the week before the appointment.
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Post by tiffany on Mar 15, 2017 11:47:07 GMT
Hello all,
I went for treatment yesterday, and I was hoping to get the results of my CT Chest scan, as I rescheduled my appointment for March 3 in order have the report by yesterday’s appointment. Unfortunately, the fellow I met with yesterday, told me that they didn’t have the radiologist report yet, and that he called to see if he could get it by the end of the day, but didn’t think that would happen (which was the case). The good news is, he was able to download the scan, and compare it to my December scan, and, based on what he saw, it looks like there is some improvement to my lungs. Unfortunately, it did not look like there was any improvement to the lymph nodes in my chest. As my oncologist is on vacation this week, I don’t know if I’ll be able to stop taking chemo after next week’s appointment, or if I will have to continue taking chemo until the end of June. My guess is that she’s going to make me continue taking chemo, given that there is no improvement to the lymph nodes in my chest. I advised the fellow that if I have to continue with chemo until the end of June, that I would need a chemo break on April 11 and 28th and May 2, as I will be going to Timmins for Easter and flying to Europe at the end of the month, and I don’t want to fly two days after getting chemo, as that is my worst day for chemo side effects. He said he didn’t think that would be a problem, and, to be honest, I need another chemo break, as my side-effects are getting worse with each treatment, in particular the shortness of breath. I can’t even walk up a flight of stairs anymore without having to stop to catch my breath, and my 30 min walk home is now taking me closer to 40 mins, because I have to stop to catch my breath, especially when going uphill.
On another note, I noticed this morning that it was one year ago today that I had my first chemo treatment. Who would have thought that I would still be getting treatment a year later. Certainly not me!
On a positive note, I went to get sized for a new sleeve and glove for my lymphedema, and the swelling in my hand and arm have gone down significantly. I asked if this meant I could stop wearing the sleeve, and she said no. If I do so, the swelling may come back. The downside to wearing the sleeve is that it’s caused tendonitis in my left arm. I noticed a few weeks ago that I was experiencing tingling and cramping in that arm, and a small bump showed on my wrist. When I showed the Fellow yesterday, he told me that the bump is one of my tendons, and that I devolved tendinitis. I had actually thought it might be that, as I’ve had carpel tunnel and tendinitis in my right arm for years, and I’m familiar with the feeling.
I also followed up regarding the genetic testing that my oncologist ordered for me, and asked when I could expect to receive an appointment. The fellow wasn’t aware that my doctor had put my name on this list, but said he’d follow up for me. I told him about an interesting study called POG in BC that is using genetic testing in breast cancer patients whose cancer has metastasized, to determine various cancer mutations. These tests are allowing doctors to determine why some people’s cancers are more resistant to certain medications than others, and it’s allowing doctors to use this information to customize medication for each patient. As an example, the study advises of one women who had stage four breast cancer and was resistant to cancer medication. After doing these genetic tests, the doctors started to give her medication for diabetes, and she’s been NED for five years. This is the same type of testing that my doctor is sending me for, and the results may indicate why my cancer is so aggressive, and what other medication they may be able to give me in order to achieve NED status. I just wish my oncologist had put my name on the list back in September like she said she would. If she had, I may have had these test done already. Going forward, I’m going to have to be more persistent with her, as she seems to be very forgetful.
Anyway, that is all to report for now. If I get my CT scan results next week, I’ll let you know.
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Post by tiffany on Mar 15, 2017 11:50:08 GMT
Yesterday was my 3 weekly appointment with my oncologist. We had a long discussion about the treatment. If I went straight back on it there was almost a definite possibility the enteritis (inflammation of the small intestine) would flare up again. We then discussed ways to reduce the likelihood of it flaring up, which included lowering the dose (which then had the side affect of would the drug actually be affective at all?) the old fashion way to receive chemo (which as Tiffany would know has a multitude of other side affects). In the end she said due to my total pathological response to the treatment last year that she would recommend not continuing with the treatment as in the end it would probably do more harm than good. So on that advice I decided not to continue with the chemo. We then discussed what follow-ups I had with the surgeon and was able to show her the 5 year plan of tests and checkups he (the surgeon) had drawn up for me.
Being in the minority, having a complete pathological response to the treatment she asked if I wanted to be involved with research into a link with aspirin and reduced occurrence and reoccurrence of cancer. Which I was happy to sign up for, at the moment it is to only get more information about the research and then make a decision to join it or not. Once everything was discussed she said there wasn't anything else she could do for me, but made sure I had all her contact details if I find I have anymore questions or worries and her parting words were "I hope, professionally I never have to see you again". Which I concurred!
It will be several more weeks before all the chemo drugs are out of my system so will have the side affects for some time to come but will lessen with each day. I will still have pain and discomfort from the enteritis for another 3 months or so, but worse case scenario could be out to 18 months before I get over it entirely.
So now I've just got to work on getting rid a skin infection I've picked up near but not on the surgical wound. Then hopefully I won't need to have anymore visits to doctors until 10 July when I have the next appointment with the surgeon to discuss the results of the tests I will have the week before the appointment. I’m glad you’re able to stop with the chemo. Sometimes I wonder if the side-effects are worth it, especially given the problems that chemo is causing you. I hope you won’t be in pain for 18 months! I also hope your skin infection goes away soon! The research regarding aspirin sounds interesting, and it’s something that you would definitely look into. Keep us posted.
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Post by tassiedevil on Mar 15, 2017 22:29:10 GMT
I’m glad you’re able to stop with the chemo. Sometimes I wonder if the side-effects are worth it, especially given the problems that chemo is causing you. I hope you won’t be in pain for 18 months! I also hope your skin infection goes away soon! The research regarding aspirin sounds interesting, and it’s something that you would definitely look into. Keep us posted. I know I am lucky that it was able to make the decision of stopping chemo with very little consequences. I'm glad the enteritis didn't kick in until now and not the first time I had chemo last year when it was really needed. Like you, I often thought are the side affects worth it? For me, last year they were, but this year, obviously, they weren't. I'm just holding out waiting to hear if I have been accepted into the research or not.
One side affect that I still have from last year that I wish would go away is the affect on my memory. I'm getting better at not forgetting things, but words are often a struggle. Case in point the previous sentence took a couple of minutes to write as half way through I forgot where it was going and then couldn't think of a crucial word so then had to change the structure of it to use the words that I knew.
Take care Tiffany and hope things work out well for you.
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Post by chech on Mar 16, 2017 0:11:52 GMT
Interesting point about the memory issues. I've had similar issues over the last few years...but the cause is quite simple for me: hormones (and the depletion of some given my age). I imagine there could be hormone upheaval with cancer/treatment and it takes time to straighten out. I know my memory is improving but I still get times when I could be typing a sentence and get stopped cold by a word. I know what the word means and can sometimes find it in a thesaurus. Once I see it, I know that is it. (And if I can't, I'll do the same thing as you and restructure the sentence). I also have issues with forgetting what I was about to do. When I'm on the computer and think that I have to check on something, if I do nothing, I can find myself there a few minutes later thinking "what did I want to check out?" So, now I open up a new tab to that site and when I get time, I just click. But overall, it is improving with time as my body seems to be adjusting to the changes.
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Post by tiffany on Mar 16, 2017 11:25:32 GMT
The fellow from my clinic emailed me last night with the results of my CT chest scan, and they were mixed. The good news is, my lymph nodes were stable, there was improvement of previous lung changes due to radiation, and the cancer has not spread to my bones, spine or liver, etc. The bad news is that while some lung nodules remained stable, others increased by 1-2 mm. All of them were less than 1cm. The fellow will discuss these changes with my oncologist when she gets back from vacation next week, and let me know in detail next Tuesday how we are going to proceed. I’m not sure if this means they are going to change my medication to TDM-1, or increase my chemo, although I have a feeling she’s not going to let me have a chemo break before flying to home at Easter. She’ll have no choice but to give me a chemo break before Europe though, as I’m not canceling my trip, and I’m not flying to Europe right after getting chemo. I have to admit, I’m a little disappointed with these results as I was hoping that the Perjeta would work for me for a lot longer than six months, and if my lung nodules are growing, that means it’s not working, at least not as well as I would like it to. I’ll keep you posted.
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Post by tiffany on Mar 16, 2017 11:26:56 GMT
I get slight memory loss for a few days after getting chemo, but, it gets better as the week goes on. Fortunately for me, the memory loss has not been long term, at least not yet.
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Post by purvis on Mar 16, 2017 14:41:54 GMT
Tiffany: Sorry your report was not as good as you had hoped for. You seem to have "two feet forward and then one foot back" syndrome. If ever a person deserves to have a tour or two it's you. At least while away you can forget about chemo, CTs and all for a while. About memory loss sometimes that's not such a bad deal considering all that both you and Tassiedevil have been through this past year. Purvis
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Post by californian on Mar 16, 2017 15:25:42 GMT
Tiffany, hope you will have everything under control pretty soon, enjoy your trip and concentrate in having a good time.
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Post by californian on Mar 16, 2017 15:32:23 GMT
"Interesting point about the memory issues.... I imagine there could be hormone upheaval with cancer/treatment and it takes time to straighten out. I know my memory is improving but I still get times when I could be typing a sentence and get stopped cold by a word. I know what the word means and can sometimes find it in a thesaurus. Once I see it, I know that is it. (And if I can't, I'll do the same thing as you and restructure the sentence). I also have issues with forgetting what I was about to do. When I'm on the computer and think that I have to check on something, if I do nothing, I can find myself there a few minutes later thinking "what did I want to check out?" So, now I open up a new tab to that site and when I get time, I just click." Oh my, this is me, in my case is old age, and trying to catch up with my Spanish has not helped, I tried to write in some blogs and as you, Chech, I stop in mid sentences and can't remember the word in either language! I depend so much in google to find it for me these days! and names, oh, names of people are the worst! I haven't started reading your tale on Egypt, I have company, so I am saving it all until I can concentrate, thank you for writing a fascinating new tale, I am sure.
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