TRIPLE POSITIVE GROUP
Comments
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I had chicken pox before age 10 too. Dr said I probably got the shingles because of chemo and the fact that even 16 months PFC my WBC was 3.5 and other numbers are low too. She said it is more common in the elderly and people with compromised immune systems.
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Exactly Bren that is why if your insurance does pay for the shot you need to be at least 60.
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Fluff, who is your onc? I have Dr. Bhatia and I'm truly hoping he isn't the one who is so sick!
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Debiann, I had weekly taxols (couldn't tolerate the carboplatin/taxotere) and they started dose reducing me when I developed neuropathy at ~ chemo # 5. By my final chemo, I think I was down by about 50% of what they'd started me with. I didn't feel any better, but that's because the SEs just keep building over time. I was scary anemic, so I'm not a good example. I'm like Moon, didn't feel good or strong or even have normal blood work until a year PFC.
Fluff, I've been thinking about why we feel so lost if we lose our MO. We all put an enormous amount of trust in these people. Even when I ended up in the hospital after the first chemo, I still had absolute faith in my nurses and doctors at the cancer center. It kind of hit me one day after finishing rads how much I believed in everyone and how little I questioned them. We are really vulnerable during treatment and these guys serve us well.
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moon, my son had chicken pox in first grade. My daughter got about ten pox a week or so later, at age 4. As she was preparing for her Thailand trip, my NP friend, the person she usually sees asked her, two days before the trip if she had chicken pox. Laura tells her and she sends her to be tested for immunity. As she is sitting on the plane to go to NYC, where she would be overnight, she gets the call. No immunity. She had to hunt down the Travelers place where they gave her the shot )cost us $175, I believe as they didn't mess with insurance).
Pbrain-I think you are probably right. I'd like to tell you I believed them and didn't question, but that would be a lie. I questioned everything. Still do. My doc is Venkatesh. So far we have heard he is stable, but not sure from what. I am going to see my NP friend for the Miranda Lambert concert this weekend. she and her husband (a doc) usually hear all the medical gossip, and were going to see what they could find out. I could probably text my PS and get the info too, but didn't want to do that.
From the beginning, I always thought I had the best of both worlds. My PS was totally irreverent, so much fun, and we laughed all the time. My husband said we were like big sister, little brother. Then right next door, was my oncologist, this gentle, caring, geniusly smart man, who was the only doc in his office (with the new cancer center, that has changed some-everything is spread out in a huge building). He took lots of time with all his patients, always ran behind. He didn't follow standard protocol but did his own thing, based on international and US info. He liked that I was knowledgable enough to carry on a conversation about treatments, etc. When I told him I downloaded the app for the publication Oncology Times and was reading up on all kinds of chemo, he was really enthused, lol.
Then....he taught yoga to his patients two times a week, from 5-6 p.m. Which generally stretched to 6:30. And drove an hour home (to Geist). Generally about a core group of 6, with others in and out. He was always checking on everyone's health then too. We had great discussions, especially when I wanted testing that he thought was unnecessary, but believed that mental peace of mind was as important as anything else, and ordered the tests.
Somehow, and I know it is silly, but I feel that as long as everything and everyone is where they are supposed to be, then I'll be ok. This change is messing with my karma.
Also makes me think that perhaps I should start looking for a doc in his early thirties who won't retire for thirty years and be there if I get to 80. Get them to like me now, so when I am old and decrepit, they will care and not blow me off.
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fluffqueen01 My PCP retired a year PFC. My BS is about to retired. While they are OK it still is hard when they are no longer going to be part of the team. You trust them, they know you and now you have to find no ones.
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Chicken pox before age 5 and shigles at 47
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....even with all of my troubles i have had with some of my team, at least we are familiar with one another! i made such a big deal about all of it, questions and everything, i am sure they would like me to find a younger team! i think some of them sorta like me challenging them with questions. when i go there, i am amazed that some of the patients there, when we are talking, don't even know what chemo they had, or, even what stage they are sometimes! these are people that are just being followed after treatment..
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Does breast cancer make us stronger ?
Avoiding the " warrior" analysis ...
http://nymag.com/thecut/2014/08/avoiding-the-breast-cancer-warrior-trap.html?mid=twitter_cut
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"May we dwell in the heart,
May we be free from suffering,
May we be healed wherever healing is called for,
May we be at peace."0 -
Had my herceptin treatment today and got the latest results on my liver enyzmes which continue to rise - especially the alk phos - the alt and ast are both high but not like the alk phos which is 3 times the upper limit - with this showing no reduction and actually still rising 6 weeks PFC the MO is sending me for a bone scan and xray on thursday. I have been having a dull ache in my mid back since the middle of may and it has been getting a bit worse. UGHH - this totally stresses me out. I will not get the results of the bone scan until the middle of the following week.
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linda - so sorry you are having to wait on info and worry - sucks!
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linda505
So so sorry that you must face and deal with this.
Know that we are all with you as you go through it . Every step of the way.
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Linda, I'm so sorry you have to deal with this. Waiting for the results of a test really stinks!
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my liver enzymes were high during and for a few months after chemo due to the insult on liver. Went to gastro doctor did US and said it was chemo related hepatitis. The fact the 3 of them were high confirmed this. If alkaline phosphatese alone was high, it would be more bone related. My ALP went up to 300.....it went away on its own...
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Linda my fingers are crossed that your back pain is something that requires only a little PT… and that's it!
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Linda....hoping that everything is related to chemo and your other meds.
Lago and Kathe-I know the docs I picked like the questions, and I totally agree with you. Unless I am demented, I will always make sure to know what I am getting, stage, etc. A woman in the yoga class struck up a conversation with me. She asked about my stuff, and when I asked about hers, she had no idea how bad or what she was getting. Just said she trusted the doc. I had to totally change the subject. That is just so foreign to me. And Lago, rebuilding a team just sucks. I don't see my BS anymore, although I know I could if I needed her. And if I had too, I could find another PS pretty easily, even though I love the guy. I don't have much planned unless I have him tweak my left one, which seemed to absorb more of the fat grafting and looks smaller. But the ONC, that has me rattled.
On the fat grafting front, anybody know how many times you can fat graft from the abs? I've gained fifteen pounds, all I'm the middle. If I fat grafted again, I could use being all sucked out!
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linda, hugs! We will wait with you.
Much love to all.
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fluffqueen01 I remember when my insurance couldn't come to an agreement with my treatment center… which would have meant I would have had to change all my doctors except my PCP (before he retired). I was so upset. They did finally make an agreement in late December that year but talk about playing it close. I agree my onc was my biggest concern.
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I know what it's like to go from an onc I really liked and trusted to one that was a jerk. Thankfully my new onc is really nice. She never got upset or frustrated with the questions I had the first time I met her. She spent 45 mins with me making sure everything was answered and I felt comfortable. My onc here in IN told me on what was supposed to be the last time I saw him that he loved the fact that I did research and had questions. It made it easier on both of us that he didn't have to spend time explaining all the little stuff.
Speaking of people not knowing their diagnosis...I had my last AC yesterday. There was an older (late 60s?) woman that came in to get blood drawn through her port. She asked me all kinds of questions about my chemo treatment and side effects. She asked if my chemo was a pill. I said no. Asked if she was taking Xeloda. Yes. She questioned why the nurse was taking so much blood. One was her markers. She didn't understand why they would take it because she had surgery. My understanding is that Xeloda is given to stage 4. Did she not know her stage? Xeloda plus IV chemo and something else she couldn't remember. I have to know everything I'm given, the side effects, and why. This is my life!!
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Thanks all for your support and thoughts - will let you know when I know something.
lovetodance - thanks - I hope that is the case with me also. My alk phos was at 478 - the ast and alt were only about 10 above the upper limits of normal and they have been coming down. The alk phos is what is continuing to rise. MO seemed a little concerned - not greatly - but enough that I didn't have to ask for the tests - it was his idea.
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Gals, can anyone tell me if I can donate blood now?. My iron level is 40. Last chemo was 7/11/13. Last Herceptin was 5/21/14. They asked when I finished treatment. I wasn't sure if they meant the bad shit or all of it. Thoughts?
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I'm not religious but ......
Hebrews 13:2
Be not forgetful to entertain strangers: for thereby some have entertained angels unawares.
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Gigi - do you mean can you donate blood to be transfused to someone else?
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Prayers for you Linda.
I'm a week away from tx 6 and dreading it more daily. I'm starting to bounce back and feel better from tx 5, but had a huge panic attack today at just the thought of doing this one more time. So far I haven't taken any of the ativan I was perscribed at the beginning of treatment, but wondering if it would help calm me enough to get through this last round. Anyone take ativan?
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gigif, I was told 5 years after tx. But not sure if that has changed. Also not sure I'd donate it again. Just wouldn't want to take a chance but maybe things will change after more time passes. I used to donate regularly and resent that I cant!
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SpecialK,
I meant can I donate at a blood drive. Moon, they told me today that I can donate 1 year after treatment. I was thinking one year after chemo, but the more I thought about it maybe I should have used the end of Herceptin. I ended up not donating b/c I got called back to work before it was my turn.
I have my 3 month check up Monday with my onc, so I will clarify with him. I know he told me 3 months ago that my blood was healthy enough to donate, but he didn't recommend it. LOL
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Gigi - the reason I asked is that up until I was dx'ed and treated I worked in Transfusion Services. I also used to donate regularly, particularly because I have a more rare blood type that is often in short supply. I will never donate again though - I worked wit the patients who were being transfused, they are often sick, elderly, frail, newborns, cancer patients, etc. Since I can't guarantee whether or not I have tumor cells circulating, and neither can my docs, I don't feel right donating my blood to others who are in need. Donor testing does not currently do any type of cancer screening on donated units. Would you want your newborn to receive a former cancer patient's blood? I would not be comfortable with it. If you feel the need to do something for your local blood bank, donate money or your time, but I wouldn't donate your blood. Just my opinion.
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Would someone please tell me if you have been able to get Medicare to pay for a knee scooter post orthopedic foot surgery or any surgery. My claims have been denied by Medicare even though prior to surgery I researched getting a knee scooter completely. Medicare advised me to have the surgeon state the necessity for knee scooter because I've had lymph nodes removed. He stated that on the RX for DME and Medicare is still denying the claim.
The supplier is billing me $244 per month, for 3 months. Ouch! I could have bought a used new scooter for $250. The knee scooter supplier is now threatening me with late penalties while I'm in appeal of the claim to Medicare.
BTW, I also have thoracic outlet syndrome, numbness in hands and pain in shoulders. Crutches were not an option. My foot surgery was, in my opinion, because of damage from the taxanes which caused extreme neuropathy in my feet for two years post chemo. My toes became claw-like and crossed over one another. I now have screws in 3 toes, plus the surgeon tightened up muscles and ligaments in my forefoot. Of the 12 surgeries I had in my 68 years, this was the most painful with the longest recovery (November - June). I would definitely not have foot surgery knowing what I've just been through. The other foot needs correction but I'll die with it in this deformed painful condition rather than operate.
Please advise if there is a way to get a knee scooter covered by Medicare. I truly can't afford the rental fee of $732 of which I wasn't advised in advance.
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Debiann, I've been taking ativan to sleep for the past couple of months. It really helps. I don't take it during the day because it makes me too sleepy and I work. Just finished round 6 Friday. Will be glad to get through this week, but I know I can.
Linda, thinking good thoughts for you and your test results.
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