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Post by tiffany on Sept 28, 2016 12:23:35 GMT
Health Issues
Hello all, I wanted to give you an update regarding my medical situation, but thought I would create a new thread, as it really doesn’t belong under the “countdown” tread. I spent the day at the hospital yesterday getting my new treatment. The good news is, I got the funding for the TDM-1, however, I have not started it yet. My oncologist wants me to take a drug called Pertuzumab (also known as Perjeta) first, because if it doesn’t work, I can still take the TDM-1 at a later day, however, if I take the TDM-1 first, and it doesn’t work, I cannot take the Perjeta later. So, I will now be taking Perjeta with my Herceptin (I was already taking this drug) every three weeks for an indefinite amount of time. I will also be taking a chemo called Paclitaxel (also known as Taxol) with the Perjeta and Herceptin every three weeks, along with a second dose a week later. I will only be taking the Taxol for 8 to 16 treatments, and the reason I’m taking it is because the Perjeta and Herceptin work better when it’s administered with a chemo. The good news is, I will be given a very minimal amount of the Taxol, so I will have very little, if any, side-effects. The bad news is, my hair might thin out, just as it was getting long enough to not have to wear a wig anymore! Oh well, as long as it works, that’s all I care about. My oncologist advised that the Perjeta is a very effective drug that will attack all of the cancer cells in my body, and that she’s seen good results with this drug in the past, so let’s hope it works for me. She also advised that I shouldn’t experience any side-effects from this drug.
I asked my oncologist why I can’t have surgery to remove the masses while going through treatment, as I want to fight this as aggressively as possible. She advised that the surgery would comprise my immune system, which would delay treatment for about three months, as she wouldn’t be able to administer any of the drugs until I was fully recovered. She also advised that the only way for her to know if the drugs are working is if the masses shrink, so she doesn’t want to remove them. She also examined my surgery site, where the three small masses were located, and advised that they look and feel like they have shrunk since I saw her last. This could be because the radiation was still working (it continues to work for weeks after you finish), and I had Herceptin three weeks ago, and it is doing its job!
My oncologist also advised that she’s going to a conference in Copenhagen in a few weeks, and she’s going to discuss my case with other oncologists, and see if she can find a clinical study for me. One study she mentioned is the Hermione trial, however, she’s going to see if there are any new ones. I asked her about immunotherapy, which pretty much cured former US president Jimmy Carter of his advanced Melanoma, but she advised that there is no immunotherapy for HER 2 Positive patients yet. Hopefully this will change in the future, as immunotherapy seems to be very effective in treating cancer patients.
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joyb
Junior Member
Posts: 59
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Post by joyb on Sept 28, 2016 14:39:29 GMT
Thanks for keeping us updated Tiffany. I've heard about Perjeta and did some reading about it when I was first diagnosed with Her2 positive cancer. Appears that there are good results with the treatment and hopefully it will work for you. Keeping you in my thoughts and wishing you all the best in your continued struggle.
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Post by purvis on Sept 28, 2016 14:45:38 GMT
Tiffany: Your treatment schedule sounds very complex and also confusing to those of us who have never had to deal with you're dealing with at this time. The good news is that you have been approved to take the "bomb" if and when you need to start that therapy. Wishing you all the best of luck and that you don't loose your hair this time around. Your friend Purvis
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Post by tiffany on Sept 28, 2016 17:06:13 GMT
Thanks. My treatment schedule is somewhat hectic, but that’s okay. At least when I’m getting treatment, I feel like I’m doing something! I visualize the drugs killing the cancer cells as the drugs are entering my system. In the meantime, I’m living my life as normal as possible, and even planning next year’s trips. Now that I’m not having surgery, my doctor told me that there’s no reason I can’t travel right now, I just have to revolve my travel dates around my treatment schedule. I saw a cost-saver tour of Croatia on the Trafalgar website that looked interesting to me, and I may go on that tour in the spring, and I’m still planning on going to Northern Spain next fall. I will put a deposit down for both tours in January, and then pay in full closer to the tour dates. That way, if something happens and I can’t go, I can cancel and not have to pay a penalty like I did this time.
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Post by plane2catch on Sept 28, 2016 17:07:45 GMT
I can't imagine what you are going through. My continued prayers for you Tiffany. Hang in there and know that you have many friends on the BB keeping you in thought and pray.
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Post by chech on Sept 28, 2016 17:43:54 GMT
Thanks. My treatment schedule is somewhat hectic, but that’s okay. At least when I’m getting treatment, I feel like I’m doing something! I visualize the drugs killing the cancer cells as the drugs are entering my system. In the meantime, I’m living my life as normal as possible, and even planning next year’s trips. Now that I’m not having surgery, my doctor told me that there’s no reason I can’t travel right now, I just have to revolve my travel dates around my treatment schedule. I saw a cost-saver tour of Croatia on the Trafalgar website that looked interesting to me, and I may go on that tour in the spring, and I’m still planning on going to Northern Spain next fall. I will put a deposit down for both tours in January, and then pay in full closer to the tour dates. That way, if something happens and I can’t go, I can cancel and not have to pay a penalty like I did this time. Positive attitude is such a big part of fighting any health issue. They pointed to this when my brother fought leukemia in 1980 with an experimental treatment that had had short term success on six previous attempts. He was the seventh and is now the world's longest living bone marrow transplant recipient. Keep us posted. <<<positive vibes>>>
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Post by mary on Sept 29, 2016 0:20:41 GMT
Tiffany, thanks for sharing with us. I am praying for your healing.
I've been to Split and Dubrovnik - both beautiful cities.
Is your Southern Caribbean cruise still on?
Mary
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Post by bet on Sept 29, 2016 6:22:52 GMT
Hi Tiffany, I wondered how your appointment went and no doubt you just want to get on with it and do what it takes to fight it. The drugs sound promising so I wish you the best in the coming months & my thoughts are with you. Always important to have positive thoughts and goals to work towards like travel.
Does the Costsaver Croatia tour your looking at, also include Bosnia Herzegovina? I saw it in this year brochure, people seem to rave on about Dubrovnik, and Croatia is on my still to see list. Have you seen the Costsaver Highlights of Bohemia tour? It's a bit similar to your Eastern Europe tour minus Croatia. I was happy with the Costsaver tour I did.
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Post by tiffany on Sept 29, 2016 11:47:32 GMT
Tiffany, thanks for sharing with us. I am praying for your healing.
I've been to Split and Dubrovnik - both beautiful cities.
Is your Southern Caribbean cruise still on?
Mary Hi Mary, I’m not sure yet if my Southern Caribbean cruise is still on. I’ll talk to my friend about it when she gets back from Eastern Europe. If it is, I won’t be going to Croatia in the spring, but if not, than the Croatia tour is my back-up plan. I’m not sure if I want to be trapped on a cruise in the middle of nowhere right now, but, by the time we are ready to go in March, things might be different for me.
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Post by tiffany on Sept 29, 2016 11:54:32 GMT
Hi Tiffany, I wondered how your appointment went and no doubt you just want to get on with it and do what it takes to fight it. The drugs sound promising so I wish you the best in the coming months & my thoughts are with you. Always important to have positive thoughts and goals to work towards like travel. Does the Costsaver Croatia tour your looking at, also include Bosnia Herzegovina? I saw it in this year brochure, people seem to rave on about Dubrovnik, and Croatia is on my still to see list. Have you seen the Costsaver Highlights of Bohemia tour? It's a bit similar to your Eastern Europe tour minus Croatia. I was happy with the Costsaver tour I did. Thanks Bet. Yes, I’m just anxious to get on with my treatment, and I hope it works for me and puts me in remission. In the meantime, I just have to live my life as normally as possible. The good news is, I don’t feel sick, and still have my normal energy level, which means I can still do all of the things I used to do. The tour I’m looking at does include Bosnia Herzegovina. I usually don’t look at cost-saver tours, as I wasn’t that impressed with the cost-saver tour I did of Germany, however, I like where this trip goes. A link for the tour is below in case anyone’s interested in checking it out. I have looked at the Highlights of Bohemia tour, but picked the Eastern Europe tour because I prefer the “first class” tours. I still hope to be able to go on the Eastern Europe tour in 2018. We shall see. costsaver.trafalgar.com/can/tours/croatia-and-bosnia-herzegovina/summer-2017?season=Preview2017
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Post by tiffany on Sept 30, 2016 11:58:32 GMT
So I met with my surgeon yesterday and went over the results of my CT scan with him in order to get a second opinion. He showed me the worrisome spots on my lungs, but told me they were small and that there’s a chance that they are not cancerous. That being said, they probably are. The only way to know for sure is to perform a biopsy, which they don’t like to do as a lung biopsy is only 80% accurate. So, if it comes back negative, there’s a 20% chance that the results are wrong. I told him that my oncologist told me there was a large lymph node in the middle of my chest that she found worrisome, but he couldn’t find it. He thinks she was referring to one of the larger spots on my lung, that’s close to my center chest. He doesn’t think it’s a lymph node, but, again, he refers to her as she’s specialist. I then told him that my oncologist examined my surgery site, where the three small masses were located, and advised that they looked and felt like they have shrunk since I saw her last. As the CT scan was able to pick up these masses, he showed them to me, and said that they were very small. He told me that if I really wanted them out, he would remove them, however, for now, he thinks I should follow my oncologist’s treatment plan. If, however, it doesn’t work, and I want to have surgery to remove the masses, he told me to call him, and he would consider it. So, for now, I’m proceeding with my treatment as planned, but I’m thinking about having another doctor look at my test results in order to get another opinion. When I speak to my oncologist, she keeps going on about how aggressive my cancer is, and how I’m a rarity, which doesn’t leave me feeling very confident. My surgeon, on the other hand, doesn’t seems to think that it’s as aggressive as she thinks it is, and, with proper treatment, I should be able to live a long life with cancer as others do, or, it may even go into remission. I hope he’s right, but would love another opinion in order to get all of the facts. I just have to figure out how to go about that. I’m meeting with my family doctor in a couple of weeks, so I’ll see if he can refer me to someone for a third opinion. In the meantime, I’m proceeding with treatment as planned and living life as normally as possible.
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Post by purvis on Sept 30, 2016 15:26:30 GMT
Tiffany: Sounds like some of the problems I've had over the years with doctors differing opinions which can drive you nuts. When I came home from a Trafalgar Tour to Hawaii two years ago I was told by 2 doctors that I had pneumonia and 2 said I didn't but it still meant that I was on oxygen for 2weeks. In your situation it still means cancer meds. If you want a different opinion why not look up Cancer Centers of America. They are located I suspect in New York State. The problem OHIP might not cover the cost of a consultation and tests. There is always GO FUND ME. Get that new opinion because until you do you won't know which diagnosis you should believe the surgeon's or your oncologist's. Will be away on a 9 day trip to London in a few days but will check in with you when I get back but until then you will be in my prayers. Purvis
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Post by tiffany on Sept 30, 2016 16:46:41 GMT
I have an appointment with my family doctor in a couple of weeks, and I’m going to ask him what he thinks. I’ll see if he can refer me to someone who can give me a third opinion. If he can’t, I’ll look into Cancer Centers of America. I’m not disputing the fact that my cancer has spread, and I want to treat it aggressively, but I would also like to have a realistic assessment as to how bad it really is.
I’ve asked my oncologist about getting a PET scan, but she doesn’t think it’s necessary. I don’t know much about PET scans, so I’m not sure if it would show anything different than the tests I’ve already done, but I may push for one when I see her again next Tuesday. They are very expensive though, so she may want to wait and see before sending me for one.
Have fun in London Purvis. I know you weren’t sure if you would be able to go on this trip, and I’m glad that you are.
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Post by purvis on Sept 30, 2016 17:20:10 GMT
Tiffany: Yes PET scans are costly. My husband had one to get an accurate assessment of his melanoma skin cancer and it was more accurate than the other tests and when he got the results he had a better idea what he was dealing with. It costs us $2,500.00 (out of pocket) but it was well worth it as we had been thinking of buying a new home but instead moved from BC to AB to be near family. This was just over thirteen years ago and a lot has been done in the treatment of melanoma skin cancer. My eldest son was operated on for that type of skin cancer 2years ago and as far as I know has had no problems. Fight for that PET scan so you will at least have a fuller understanding of what you're dealing with. With cancer ignorance is not bliss. Purvis
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joyb
Junior Member
Posts: 59
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Post by joyb on Sept 30, 2016 17:44:50 GMT
Tiffany, I hope you will be able to see another oncologist. Going through this myself, I had a different experience as The Cross Cancer Institute in Edmonton uses a team approach....at least when dealing with breast cancer. I was assigned one oncologist but the team that kept reviewing my file consisted of 3 oncologists, 2 radiologists and 2 pathologists. My oncologist said before any treatment plan was put in place the 3 of them sat down and would review individual files and come to an agreement on the treatment plan. I always felt confident that I was getting the best treatment and liked that there were 3 different specialists reviewing this as my treatment progressed. I'm not saying that problems didn't arise and everything was smooth sailing as there certainly were a few hiccups along the way but I always felt confident in my team. As for the PET, I certainly would press for it. This was part of my initial scanning as the cancer involved my lymph nodes and the cost was covered by Alberta health care. Not sure what it is like in your province. Take care and thinking of you.
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Post by tiffany on Sept 30, 2016 18:30:32 GMT
I will mention the PET scan to my oncologist again when I see her on Tuesday. My understanding is that it is covered in Ontario, but if it’s not, I will offer to pay for it out of pocket. It will be worth it!
The problem in ON is that we have a shortage of oncologists. My surgery was at St. Joseph’s hospital, as that’s the hospital my family doctor is affiliated with. I liked my surgeon, so I decided to stay at that hospital for surgery, but asked him to refer me to Princess Margaret Hospital for oncology. After surgery, he sent my referral, but it was to see a radiation oncologist, not a medical oncologist. When I met the radiation oncologist at Princess Margaret, I asked him to refer me to a medical oncologist at Princess Margaret, and he told me he wouldn’t be able to get me an appointment as they were short staffed and didn’t have enough doctors to treat the patients they already had. He then referred me to my current oncologist at St. Mike’s hospital, who is the head of the department and reputable, but, I now have three doctors at three different hospitals who all seem to have different opinions. As all of these hospitals are now part of the “University Health Network” all of my test results are supposed to be available to all of my doctors online, so that they can work together to determine a treatment plan, but that’s not the case. That’s why I had to get my own CD from St. Mike’s, and bring it to my surgeon at St. Joe’s. My test results were supposed to be online, but for some reason they weren’t. When I was at the hospital last Tuesday, I was talking to another patient about how long it takes to see the doctor when I’m there for treatment, and she told me she complained to our doctor about it, and our doctor told her that there were just not enough doctors and too many patients, and that she was doing the best she could to treat everyone assigned to her. The place is a zoo every time I’m there, so I can understand where she’s coming from. I’m glad I live in Canada, and that we have public health care, however, there are a lot of problems with the system, and doctor shortages and long wait times are some of them.
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joyb
Junior Member
Posts: 59
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Post by joyb on Sept 30, 2016 20:26:40 GMT
That sounds like a nightmare that you are going through with different doctors at different locations. The medical oncologist and radiology oncologist that I saw were all at The Cross and all my tests were done there making it much easier than what you are having to endure. I was sent to a satellite chemo centre in northeast Alberta after my 1st treatment but even with that, everything is monitored by The Cross even with the chemo drugs being ordered from them and sent out to the satellite centers in the province. It's sad that there are shortages of oncologists in some provinces as it makes for an even more stressful time for the patients. Good luck with your PET scan issue...hoping it works out for you.
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Post by bet on Oct 2, 2016 22:36:44 GMT
What a complete shambles it's been for you Tiffany. I would definately be requesting a pet scan, I'm a bit surprised one was not offered. My sister had one with her breast cancer and my mum had one last year, she had a fluid like lump near her ear. She was told by several doctors it was nothing to worry about, except for she was one of the rare cases where it had turn cancerous so I think your spot on to get a third opinion, especially considering your surgeon originally told you that your ct scan came back fine. I'm sure your oncologist wouldn't over reach your diagnosis but you never know and why a third opinion is needed. You don't need to be on an emotional roller coaster more than you already are. Good luck with everything..
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Post by tiffany on Oct 3, 2016 11:36:26 GMT
Thanks Bet. My surgeon originally told me that my CT scan looked good without actually looking at it. He was taking the word of a Fellow at St. Mike’s, who texted the information to him. He apologized for telling me the scan looked good without looking at it himself to confirm, and that’s why he wanted me to bring my CD to his office so that he could look at it himself. That being said, I still want to get a third opinion, as he doesn’t see the “worrisome” lymph node that my oncologists sees. I don’t dispute that there’s spots on my lungs, I just want to know how bad they really are. I’m also going to ask my oncologist for a PET scan when I see her tomorrow. She didn’t think it was necessary the last time I mentioned it to her, but maybe I can change her mind once I tell her what my surgeon told me. We shall see!
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Post by chech on Oct 3, 2016 14:48:59 GMT
It's interesting how opinions can vary. When my doc looked at my skin cancer spot, he didn't think it was cancer but sent me to a dermatologist only because it was in a bothersome spot. The dermatologist said it was cancer and sent me to a plastic surgeon and she didn't think it was cancer....but there was no question of removing it because of where it was. When the results came back to say it was cancerous, the surgeon and my gp were floored. Opinions are one thing. Cold, hard test results are usually indisputable.
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Post by tiffany on Oct 3, 2016 15:01:51 GMT
I’m glad the plastic surgeon removed it, even though he didn’t think it was cancer. As far as I’m concerned, when it doubt, be more aggressive, not less!
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Post by tiffany on Oct 5, 2016 11:41:58 GMT
I went to the hospital yesterday for my second dose of Taxol (chemo). The enzymes on my liver were a little high, but they decided to give me treatment anyway. They just administered it at a slower pace, in case I had a reaction. My side effects from last week's chemo have been very minimal, and I'm able to work and live like normal. The chemo gave me a bit of a bad taste in my mouth, and I had some slight muscle aches on Friday evening. They only lasted for about 5 mins, and they didn't bother again after that. I also experienced a little bit of light-headedness on and off over the weekend, but it was not bad at all.
I met with the nurse practitioner while at the hosptial, and asked her a few questions. It's a good thing I did, because I asked her a question regarding the Tamoxifin I am taking, and it turns out that I am not supposed to take it while I am taking chemo, which I didn't know. My oncologist failed to mention this when I saw her last week! The nurse also advised that my white-blood count was a little low, but not low enough for me not to be out and about. She just told me to wash my hands often, to try and not touch my face, and to avoid sick people when possible. She also advised that my Phosphate levels were low, and I have to drink a glass of water twice a day for three days containing a Phosphate tablet. I started taking them yesterday, and they taste horrible!
I mentioned my conversion with the surgeon to the nurse practitioner, and she advised me that he was correct that they don't know for sure that the dots on my lungs are cancerous, however, they are treating me based on the assumption that they are. I took a blood test called CEA, which determines the tumour markers in a body. I have not taken this blood test before, because it does not detect breast cancer, however, it does show tumour markers that have spread. It takes three days to get these test results, so I won't know the results until my next treatment in two weeks. Markers of 0 to 4 are normal, and anything above 4 indicates cancer. As I have never had this test before, they will use these test results to determine if the new medication is responding. If the markers go down when I'm tested again next month (OHIP only allows for this test on a monthly basis), that means it's working. If they don't go down, that indicates that the treatment may not be working, and they will then send me for a further CT scan. I also asked about getting a PET scan, but my nurse practitioner told me that I don’t meet the qualifications for a PET scan. It seems in Ontario, OHIP will only pay for it if you meet certain qualifications. I mentioned paying for it myself, but she said I don’t really need one right now, and that she doesn’t know if they would allow it even if I did. I won’t push for one for now, but if this new medication doesn’t seem to be working, and I feel like I need one, I’ll push for it. The nurse practitioner also told me that she has another patient who has been taking the new drug that I am talking for over 100 treatments (a little over 5 years), and that it's still working for that person. Let's hope it does the same for me! The good news is, she told me I should be able to travel in the Spring as planned, as long as I revolve my travel dates around my treatment schedule. As I will be taking this drug for the rest of my life, or until it stops working, I need to get used to revolving my life around my treatment schedule. I’m just happy that I will still be able to travel!
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Post by californian on Oct 5, 2016 17:44:29 GMT
It seems you are in the right tract Tiffany, keep your spirits up and continue with the treatments. Taking meds for the rest of our lives is something normal for many of us, thanks to all the labs and doctors, Nobel prices etc etc, we continue to enjoy life, work and travel! God speed and prompt recovery! .
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Post by bet on Oct 5, 2016 23:51:06 GMT
Hope you get some definite answers soon Tiffany, I can imagine the constant testing and waiting for results is hard to deal with but it goes to show how cancer is such an individual thing and treatment is different for everyone. I'm glad you can still travel and have something positive to look forward to.
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Post by tiffany on Oct 6, 2016 12:00:24 GMT
I don’t have a problem taking this medication for the rest of my life, as long as it’s working! That being said, I’ll have to get used to going to the hospital every three weeks for the rest of my life to have this medication administered, as it’s administered via IV. It would be much easier if it were in a pill format, but it’s not. It’s also very expensive and I’m surprised that OHIP will pay for it for the rest of my life, but I guess they do. Right now, I’m just hoping that it works and puts me in remission, and that I stay that way for years to come. If the cancer does eventually come back, at least I have the TDM-1 drug as a back-up, and, who knows, they may have come up with an immunotherapy drug by then. Everything is uncertain for me right now, and I think it will be for the rest of my life! This is hard for a planner like me!
I’ve been keeping in touch with my friends who are in Eastern Europe. They are driving from Dresden to Prague as I write this, and are almost done the tour. They have really enjoyed the tour, and we are all still planning on going to Northern Spain next year. We were originally going to go next fall, but we are now talking about going in the Spring. I don’t know what my health will be like next fall, and I think my chances of travelling this Spring are good. That being said, I’m still hoping to go away in the fall too, but I will have to wait until closer to then to confirm. Going forward, I’ll just have to take things one day at a time!
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Post by californian on Oct 6, 2016 15:03:51 GMT
I understand your concern about having the drug via IV and having to go to the hospital every three weeks, at least for now, who knows, perhaps soon a new form becomes available, in the meantime, we are grateful you have this option. A trip to the hospital every three weeks takes planning, but you will soon get use to do it, your health is so worth it! Sending you good vibes and thoughts!
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Post by mary on Oct 9, 2016 17:48:28 GMT
Thinking of you, Tiffany. It sounds like you are receiving excellent care. Sending a hug your way...
Looking forward to hearing about your spring travel plans as they develop.
Mary
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Post by Tulips on Oct 9, 2016 17:58:15 GMT
I'm stunned to hear your news Tiffany, and am really sorry you had to cancel your trip, after all. I'm sending prayers your way and am thinking about you. Thanks for sharing. Do you mind if I ask if you found it yourself or did you go for a mammogram?
Hopefully, you will be able to do all your planned travels in 2017.
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Post by tassiedevil on Oct 10, 2016 1:59:21 GMT
Well I survived the last 6 weeks of radiation and chemo (that wasn't as bad as it sounds as it was in tablet form). The last 2 weeks were a struggle each day to get up go to work and have the treatment, but got through it. I see the surgeon tomorrow to work out a date for the surgery. For me the sooner the better, I've got a plane to catch!!
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Post by chech on Oct 10, 2016 11:15:33 GMT
Awesome!
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