Seen my onc today...
1-Reguarding the triple negative...Im ER+/PR+ HER2 (1+). In one of the past posts nobody really knew what HER (1+) meant...including me, but thank you ladies for tryin to help me figure it out. This is what my onc told me. The (1+) means im HER negative...if i was (2+) i would be positive...i guess that is the cut off point between being negative and positive. So im sitting right on the edge of the cut off point...reason being why i did not have to take Hercepton.
2-I got the result of the BRCA 1 & 2....also negative.
3-I got the results of my Vit D level which was at 34...not bad there either but she said she would like to see it a little higher like around 40...so now i will be taking Vit D pills.
4-I have gained 15 pounds since this started...i use to weigh 96 pounds now im at 111 pounds...and still gaining. But of course she said the Tamoxifen has nothing to do with it.
5-Then with the shoulder issue she is sending me to an Orthopedic doctor to do some testing. So we will see later about that outcome.
6-They went to flush my port and it was clogged so this lady (who was not a nurse) said she was going to take the blood draw from my arm...i told her politly she cant do that and they just need to give me the stuff to dissolve it then take the blood. I have had this done a few times in the past already. Do you think she acknoledge anything i said...hell no she thinks she knows everything and ignored me and just continued to get the stuff together for it...so i repeat myself...then out of nowhere she got a really bad attitude with me and got really pist cuz i wouldnt let her...so i walked out and my doctor happen to be in the hall and was asking what was going on ...i breifly explained and she told me she was going to have someone else do it and do it right...i have no idea what happened to the other lady cuz i left. I hate it when people think they know what is best for you just becuz they are in the medical field.
Comments
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Oh great!
That was not a good experience for you today! So...did you not have the blood draw at all?
My onc and yours are basically on the same page as far as HER2 goes. Mine says 0 or 1 are definitely considered negative. He says 2 is "borderline" and 3+ is strongly positive for HER2. Glad you're negative.
Like me, you're up late tonight. Have a good one!
Marsha
P.S. About the weight, I'm gaining weight now too. In the beginning I didn't but now on Taxotere for 6 weeks, I've gained about 5 pounds.0 -
Hi Jo Jo
Congratulations on genetic testing. I am sure you feel relived. You did everything write. I am really proud of you. Boy, I thought I am the tiniest girl on this board, but you are the champion. I am 124 lb now when I was diagnosed I was 114. Still size 4. What is about you?
Good night
New Flower0 -
Marsha no i did not get myNew Flower said:Hi Jo Jo
Congratulations on genetic testing. I am sure you feel relived. You did everything write. I am really proud of you. Boy, I thought I am the tiniest girl on this board, but you are the champion. I am 124 lb now when I was diagnosed I was 114. Still size 4. What is about you?
Good night
New Flower
Marsha no i did not get my tests done...i told my doc i was to pist about that ladys attitude at that point and wanted to leave so my doc told me to come back tomorrow anytime and they wont even make me wait.
New Flower your still very very tiny and to answer you i wore a size 0 but now im a size 1.0 -
sometimes medical peoplejo jo said:Marsha no i did not get my
Marsha no i did not get my tests done...i told my doc i was to pist about that ladys attitude at that point and wanted to leave so my doc told me to come back tomorrow anytime and they wont even make me wait.
New Flower your still very very tiny and to answer you i wore a size 0 but now im a size 1.
sometimes medical people want to do whats right for them not necessarily you and need to be reminded. Most are good I think, but you get a few not so good ones. Mostly we have to be our own advocate.0 -
For JO JO and warriors with
For JO JO and warriors with a port...
you may already know these ideas, but have had port for 3 years and it can be stubborn to say the least...
a few tricks...
even with a port do that hydrate hydrate thing
try turning head towards side where your port is and cough a couple of times (but not on your neighbor)
try putting your arm over your head and squeeze your fist several times
try lowering your chair
try all of the above together or in some combo...
all else fails speak up like you did...take charge of your tx...love, shy0 -
Good for you!
Great News on your Brca testing. I also take VitD. I am her2 but just finished a year of Herceptin. And good for you if you don't speak up for your self no one will.Before I had my port when ever I needed an blood drew or IV I told who ever was doing it they only had one shot at it or I was out of there. Never had more than one stab, they called in the best one for the job. So never be afraid to speak up we all have been through enough!0 -
Jojo, I guess all in all it
Jojo, I guess all in all it was a positive day for results for you. I never had a port so I'm not aware of the issues that can come for it. I do know that some medical personnel can come across as the know it all of everything when in reality they may not know much at all. It's always a good idea to stick up for yourself because if you don't no one will. I surely don't have to tell YOU of all people that, I have read your posts and know that you definately tell it like it is. That's a good thing!! Wishing you success in getting your shoulder under control. Take care.0 -
My oncologist told me that
My oncologist told me that tamoxifen would cause me to gain up to 40 lbs if I didn't watch my weight very closely. I did try very hard and still gained about 20 lbs. The weight came off though when I got off of it. And the tamoxifen kept me in remission for 22 yrs so it was definitely worth the side effects. But tamoxifen can be associated with weight gain--enough so that my oncologist warned me to be very careful with my diet and to step up my exercise. However, your onc is correct in that if you google tamoxifen, most sites will say that there is no increased incidence of weight gain. But I was 33 at the time and I could tell it was the tamoxifen--so there's my 2 cents ;-)0 -
Already wrote this once but must have pushed the wrongCypressCynthia said:My oncologist told me that
My oncologist told me that tamoxifen would cause me to gain up to 40 lbs if I didn't watch my weight very closely. I did try very hard and still gained about 20 lbs. The weight came off though when I got off of it. And the tamoxifen kept me in remission for 22 yrs so it was definitely worth the side effects. But tamoxifen can be associated with weight gain--enough so that my oncologist warned me to be very careful with my diet and to step up my exercise. However, your onc is correct in that if you google tamoxifen, most sites will say that there is no increased incidence of weight gain. But I was 33 at the time and I could tell it was the tamoxifen--so there's my 2 cents ;-)
button so I'll write again....
JoJo: Good for you, I never let those people push me around, especially when it comes to my port and blood tests! I get my port flushed every 30 days.
Shy: Do you do these exercises daily? I have had my port for a little over a year and plan to keep it for as long as I can. this is ok with my surgeon and onc. I will start doing these exercises. But how often?
Hugs, Judy :-)0 -
Hi Miss Judy, actually theseSkeezie said:Already wrote this once but must have pushed the wrong
button so I'll write again....
JoJo: Good for you, I never let those people push me around, especially when it comes to my port and blood tests! I get my port flushed every 30 days.
Shy: Do you do these exercises daily? I have had my port for a little over a year and plan to keep it for as long as I can. this is ok with my surgeon and onc. I will start doing these exercises. But how often?
Hugs, Judy :-)
Hi Miss Judy, actually these are not exercises but individual things to do when having trouble getting port to give blood...one or more of these things have worked in the past when the port gets cranky...which can sometimes happen for no apparent reason...i always opt to try these and then if port still cranky, let them use the clot breaker upper stuff...0 -
Sorry JoJo,shy violet said:Hi Miss Judy, actually these
Hi Miss Judy, actually these are not exercises but individual things to do when having trouble getting port to give blood...one or more of these things have worked in the past when the port gets cranky...which can sometimes happen for no apparent reason...i always opt to try these and then if port still cranky, let them use the clot breaker upper stuff...
I do not
Sorry JoJo,
I do not understand why there are people working in an onc office with attitudes. You have to stand your ground and do what do need to do. I had a port in my arm (it was removed 7/28) and they only used it for chemo. I thought they told me I could have blood from it, but everytime I said that at the onc office, they said no. So finally I just gave up.
Also when I was in surgery to have the port on my right arm taken out, they put the blood pressure cup on my left arm (the cancer side). Of course I didn't notice it at first, then I said something and one of the nurses said, Yea, she had the band on her arm not to put the cup on it Duh!
Rhonda0 -
JoJo
I too am ER/PR+ and HER2- and tested negative for BRCA 1 & 2. My dr likes to see Vit D at 50 or better. Mine went from 60 in April to 40 after surgery and down to 30 a couple weeks ago. I already take 2400 IUs of Vit D so dr monitors it. You are a very tiny young lady, indeed! I weighed 100#s when I graduated high school but I was at 114#s after 2 kids and I was only 5' tall. I gained 80#s post menopause (including quitting a 38 year smoking habit). I'm ashamed of my weight right now and I've gained 20#s since surgery. Neither of my sisters gained any weight taking Tamoxifen and Arimidex so I don't know what to expect. All I know is that I have more than 50#s to lose eventually. I hope an orthopedic might have some answers to help with your shoulder issue. As for the lab tech - it's unfortunate that some don't listen to what you tell them. My surgeon and oncologist don't have a problem getting blood from my arm or hands. Matter of fact nothing is drawn from my port. It's used just for chemo treatment.
{{hugs}} Char0 -
My port has never been usedGiant Poodles said:Sorry JoJo,
I do not
Sorry JoJo,
I do not understand why there are people working in an onc office with attitudes. You have to stand your ground and do what do need to do. I had a port in my arm (it was removed 7/28) and they only used it for chemo. I thought they told me I could have blood from it, but everytime I said that at the onc office, they said no. So finally I just gave up.
Also when I was in surgery to have the port on my right arm taken out, they put the blood pressure cup on my left arm (the cancer side). Of course I didn't notice it at first, then I said something and one of the nurses said, Yea, she had the band on her arm not to put the cup on it Duh!
Rhonda
My port has never been used for draws but I've been told that it can and IF I shuld be in a bad car wreck or something else taumatic that the port would probably be the first line of use for IV's a it is already 'established'. I have been told that the main reason that ports aren't often used for draws is that techs can't legally access them - it takes an RN or Dr.
I have great veins and don't mind the prick so doesn't matter to me.0 -
The woman missed the whole pointcahjah75 said:JoJo
I too am ER/PR+ and HER2- and tested negative for BRCA 1 & 2. My dr likes to see Vit D at 50 or better. Mine went from 60 in April to 40 after surgery and down to 30 a couple weeks ago. I already take 2400 IUs of Vit D so dr monitors it. You are a very tiny young lady, indeed! I weighed 100#s when I graduated high school but I was at 114#s after 2 kids and I was only 5' tall. I gained 80#s post menopause (including quitting a 38 year smoking habit). I'm ashamed of my weight right now and I've gained 20#s since surgery. Neither of my sisters gained any weight taking Tamoxifen and Arimidex so I don't know what to expect. All I know is that I have more than 50#s to lose eventually. I hope an orthopedic might have some answers to help with your shoulder issue. As for the lab tech - it's unfortunate that some don't listen to what you tell them. My surgeon and oncologist don't have a problem getting blood from my arm or hands. Matter of fact nothing is drawn from my port. It's used just for chemo treatment.
{{hugs}} Char
Point is flush the port. If it won't flush or give a blood return it is clogged. It is crucial the nurses unclog the port. When I go to get my port flushed if nurse Sharon is there I let her know I want her to do it. I will wait if I have to, because I know Sharon will flush it , and she is so kind. Sharon is the only one who doesn't have trouble with my port.
This post reminded me it's time to go have my port flushed yeah0 -
Great but about your Vit D levels...
Hi JoJo,
My level was 30 and my doctor said the new evidence is that it should be close to 80 in order to be protective. I have a very proactive doctor who reads a lot about nutrition. She said they used to say 40 but that's no longer the standard among doctors who keep up on that sort of thing. I also go to a natropathic (sp?) doctor who said the same thing. I would do some research about Vit D levels. We can use all the protection we can get!
Roseann0 -
Maybe I'm miss reading (if Ims.sunshine said:The woman missed the whole point
Point is flush the port. If it won't flush or give a blood return it is clogged. It is crucial the nurses unclog the port. When I go to get my port flushed if nurse Sharon is there I let her know I want her to do it. I will wait if I have to, because I know Sharon will flush it , and she is so kind. Sharon is the only one who doesn't have trouble with my port.
This post reminded me it's time to go have my port flushed yeah
Maybe I'm miss reading (if I have I apologize!) but aren't your flushes already scheduled? Mine are schedule every 4th Thursday til April (when I see my Chemo Dr again.)
I prefer my PA's RN to do my flushes but usually can't get her. The head of nursing staff is the one who usually does it and he really isn't my favorite but he's getting a lot better with time - but then I'm the only one with a port that is being cared for thorough my VA Clinic.0 -
Some blood draws can comeRague said:My port has never been used
My port has never been used for draws but I've been told that it can and IF I shuld be in a bad car wreck or something else taumatic that the port would probably be the first line of use for IV's a it is already 'established'. I have been told that the main reason that ports aren't often used for draws is that techs can't legally access them - it takes an RN or Dr.
I have great veins and don't mind the prick so doesn't matter to me.
Some blood draws can come from the port...it depends on what panel they are running or if they are trying to isolate an infection or illness in the body. The emts will not acess ports in an emergency...they go straight to the main access areas. Emergency rooms also are not comfortable and often not knowledgeable about ports. If you are in a hospital and you struggle with weak veins you can ask for an iv team to do iv and draws...or they can wrap warm towels around your arm for about ten minutes which helps bring veins to surface...or you can ask for someone from the onc unit to come to er to help...went through this with my mom for two years and myself for 3 1/2 years with our ports and emergencies.0 -
My port is a POWER PORTshy violet said:Some blood draws can come
Some blood draws can come from the port...it depends on what panel they are running or if they are trying to isolate an infection or illness in the body. The emts will not acess ports in an emergency...they go straight to the main access areas. Emergency rooms also are not comfortable and often not knowledgeable about ports. If you are in a hospital and you struggle with weak veins you can ask for an iv team to do iv and draws...or they can wrap warm towels around your arm for about ten minutes which helps bring veins to surface...or you can ask for someone from the onc unit to come to er to help...went through this with my mom for two years and myself for 3 1/2 years with our ports and emergencies.
My port is a POWER PORT which means all blood draws, chemo, stuff they inject for ultrasounds CAT Scans ect and things of that nature are all to be used thru my port...i have noticed not all ports are power ports. As you said Shy not everyone knows how to use them or is familiar with them and also your emergency people may not use them cuz they do not know if they are power ports or not...it does make a difference. If you have a port and they try to bypass it by using your arm it can colapse the port tube that is inside your vein...then the port has to be removed. This is if your port is in your arm like mine and they try to use the same arm the port is in. I have had doctors from the ER and nurses try to tell me different and my doctor that put it in told me they will try but NEVER NEVER let them do it cuz its my health that is at risk!0 -
Rague yes i schedule mineRague said:Maybe I'm miss reading (if I
Maybe I'm miss reading (if I have I apologize!) but aren't your flushes already scheduled? Mine are schedule every 4th Thursday til April (when I see my Chemo Dr again.)
I prefer my PA's RN to do my flushes but usually can't get her. The head of nursing staff is the one who usually does it and he really isn't my favorite but he's getting a lot better with time - but then I'm the only one with a port that is being cared for thorough my VA Clinic.
Rague yes i schedule mine every 3-4 weeks to have a flush...but this time it was sheduled with my doctors appointment cuz i knew id have to have blood work so we killed 2 birds with one stone.0 -
Roseann thanks that is goodroseann4 said:Great but about your Vit D levels...
Hi JoJo,
My level was 30 and my doctor said the new evidence is that it should be close to 80 in order to be protective. I have a very proactive doctor who reads a lot about nutrition. She said they used to say 40 but that's no longer the standard among doctors who keep up on that sort of thing. I also go to a natropathic (sp?) doctor who said the same thing. I would do some research about Vit D levels. We can use all the protection we can get!
Roseann
Roseann thanks that is good to know...but if its suppose to be at 80 that means im really low then huh? I wonder if that has anything to do with having osetoporisis caused by chemo? Also does neropathy have anything to do with Vit D levels?0
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