Calling all TNs
Comments
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Suze, sorry to hear about your arm. I have no idea how or what, but there seems to be some connection to Estrogen, cancer drugs and our arms. Ever since I took aridimex, I have an arm disesae, not sure how to explain, maybe just as you explained, tingling, pain, tension, bone pain, it is horrible. I have developed many theories during this disease, one is that I feel when estrogen is reduced in our bodies, our arms somehow get affected, especially the right, in your case, it seems to be the left. I have noticed a few friends who while going through menopause (they dont have BC), have had arm pain for years. Menopause does reduce the hormones, especially estrogen in our bodies. How weird is that? Arm pain, menopause, BC medications which reduces hormones in our bodies? Can you see the connection?
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Local foraging in the rain
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Hi guys, long time since I have been here. Hoooooly, what a horror show my life is.!!! Never in a million years would I have thought I would end up here. As far as my cancer... I'm not sure where I am because no one is taking the lead on my care. I haven't seen a doctor in 6 months, since my last scare with recurrance (negative thank goodness). I had a phone message last week that I had missed my appointment at the cancer clinic and they would rebook for the end of october, meanwhile, I have an appointment card that says sept 17th.. I have been living in a womens shelter since Mothers Day because 4 days after I retired from work to enjoy the rest of my life, my insignificant other decided I was -----ing useless, and flew into a huge rage that left me totally done. Now I am waiting to move into a nice little condo near a lake with nice walking paths for me and the dogs to enjoy. The only problem is.... I have to wait for the sale of the house for any money, and because I didn't put the same monetary amount I will only receive a quarter. Doesn't mental hardship count for anything??? Anyway, thanks for letting me vent guys, I just needed someone who was on my side.
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Dear Kelben, your nice little condo by the lake sounds like heaven, hope you can move in there very soon. It is really hard to sell homes right now, everyone is in the same boat as you. If you had been here in Calif. you would receive half of your community property, not a quarter. Regarding your cancer, you have to take the lead yourself. I wouldn't wait 6 months for an appointment, remember, early detection means cure, Good Luck with everything, just act on your dreams now, don't wait for tomorrow, whatever you need to do.
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thanks lovelyface and yes I am looking after myself. The doctor app'ts are remade and I'm packing for the move.... I can't wait to get settled. I have an appointment with the PS next month, hopefully that will go smoothly and I will be scheduled for reconstruction.
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I'm so frustrated I got the call today that I didn't make the trial. I had a 66% chance of getting one of the new trial drugs. I guess I'll be the guinea pig to show how great these other drugs work on patients that get the additional trial drugs. I feel like all odds are against me. I don't like this feeling I can't stop crying. I will only be doing the xeloda or what ever its called. I can't think straight. My onc has another trial she is looking at in case this standard protocol bulls**t doesn't work. Hell standard protocol is one of the reasons I'm at where I'm at. I'm going to be on my pity whoa is me for a little while. I'll post later when I can climb back on my positive life is wonderful glad to be here wagon.
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((((LJ)))) ((((Kelben))))
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laurajane: I am so sorry. I don't blame you for being upset. Is it too late to get into a different trial?
(((hugs)))
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LJ- "Life sucks... and then you... get on with it"
You will too. Go distract yourself with.... ice cream,.... chocolate,..... sex........
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Laurajane, honey, big hugs to you. Keep on trying, don't stop. I am sure you are already doing everything possible, but for whatever it is worth, how about the same trial in another city. I know all this takes time and you have to move quickly. Lots of love to you as you move along the next few days. These days too shall pass ...... wishing and praying you will become whole again soon!
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LJ - I'm sorry to hear that, really too bad. If it's some small consolation, research trials that show very promising (life-saving) results are often cut short for ethical reasons so as to extend the benefits to all patients. So if either of those drugs are the real deal, you may get it down the road. Not great news maybe... but it is what it is.
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LauraJane, its like Heidi says...
I was in the Avastin trial, and as far as we can see now, it added big risks, for no rewards. Hugs to you.
susan
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Sorry LJ. I don't mean to offend you by saying this but just maybe there is a Devine reason you were not picked for the trial. be positive that the right thing will surface. A hug to you, it's OK to whoas me. I'm doing a lot of it lately.
I had my port put in this morning and had a hypo sensitive reaction after the procedure. My neck hurts like hell where they inserted the tube. The only positive thing I can come up with is I wont be needle poked again soon. Chemo starts Thursday.0 -
Laura Jane...that is really lousy news. I am so sorry. you have been doing everything you can and I hope you keep on doing it. This cancer is just the pits and I am sending hugs and wishes to you that you can get back up there and find a resource for yourself.
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I have talked to my onc's about getting into trials..there are even posters on the wall..my DH's dad was in trials back in the 70's...
I don't understand these trials at all..can someone help me...are there soo many people trying to get into them? How is the decision made? I understand why Stage 4 would be taken first into the trial...but dang..can't they expand it to people who aren't Stage 4..to maybe prevent them from being Stage 4? Prolly a stupid question but I just don't understand the protocol.
Heidi..funny stuff about the sex..I do hear it is supposed to good for you...maybe I should try it but dang..my DH has been so grouchy lately...
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Notsobusty:
The pain in your neck is totally normal. I had it too - couldn't even turn my head to the left while driving - and that was just loads of fun trying to get onto the freeway. It lasted about a week, but my port area itself and the damn tube inside my neck always remained a bit sensitive. I was in a panic thinking something was wrong, until I read a lot of gals had what I was feeling from the port. Glad it's done - it will be a great relief to you along the way - for sure!
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My port is on the left side of my upper chest and my neck was not touched at all, Were your ports installed somewhere else? I would imagine it would be quite painful in your neck, I haven't had any pain with my port but it sort of sticks out and gets caught on my bra strap every so often which hurts and just feels really freaky.
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The right thing WILL come along LJ.
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I am wondering if any one of you ever experience sharp pain under your breasts, I guess the ribs. I have experienced that after chemo, that whole area has a pretty sharp pain, on both sides, however, the sharp pain is there only when it is touched. It is almost as if some liquid or something collects there but once when you massage for several days, the pain goes away. I think I had asked this question once before but did not get much response. Recently, I was trying to check my general upper body areas with some massage oil and was shocked to find this pain, wow! very painful. One can feel their ribs in this area, maybe the pain is coming from the ribs. I had experienced this right after chemo last year as well. I had read somewhere before that we have glands right below our breasts. Does anyone have any input, comments, please. Would really appreciate hearing from you. Please check yours and see if you hurt in those areas. Ths is really important for me to know why I have this sharpness in this area.
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lovelyface- I am thinking of inventing an iron bra for just this reason. When my cat walks on my affected boob IT HURTS. Two years later the pain reaction has not decreased. On the other hand, it WAS my cat who discovered the tumor (you guessed it... by stepping on it) so I can't really get mad at her.
FWIW
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Laurajane - I am so sorry you didn't get the trial drug arm! Can I just say, that SUCKS!!! But, keep in mind trials are YOUR choice, so you can drop out at any time. If you aren't comfortable with staying, don't be afraid to make a decision.
I went back to the study and found it said this - Mity is right:
"At the discretion of the investigator, patients will be eligible to receive either ramucirumab DP or IMC-18F1 in combination with capecitabine, after radiographic disease progression while on capecitabine. The investigator will decide which investigational product will be given."
This means that if the Xeloda doesn't appear to be working, they can switch you to the experimental arm! That is good news!!
Is you doctor willing to try Avastin? It has not been yanked yet by the FDA, and my doctor is really hopeful that a middle ground will be reached that allows women on it and responding to stay on it. It isn't a miracle drug, but it does have a benefit for TN (they have teased the data out of the studies, just haven't published it yet), and some women are "super responders." There are definite side-effects, so it has to be considered carefully. I've not had any as of yet. Being recurrent, you fit the guidelines for use according to the NCCN.
If you decide to go with just Xeloda, please know that some women are seeing a great response to this drug. And if not, there are still more to try.
Hugs!!
Titan and Sugar - thanks for the input on the orthodontia! My DS is only 7, and his dentist likes to wait until 8 for the consult. He has bite issues - so we'd probably be looking at a palate expander first. I know they are doing it earlier these days as the mouth is more "flexible" and then the braces are off earlier. But the expense, ugh!
Lovely - I am wondering if the arm pain in many of us is related to radiation... did you have any? I had the full monty - and I think I am getting some neuropathy from that. It has eased up a bit, thank you for your thoughts. I hope you find some relief soon. I do know joints especially get affected by the lack of hormones in our bodies, and my doctor seems to think the chemo I had is causing some arthritis as well. It sucks. But I'm alive. What a trade-off, huh? If you did have radiation, then the rib/chest pain could also be related to that.
NSBusty - I have my port through my neck vein, and yea, my neck was killing me for at least a week. They have to really dig around those muscles. It will get better!
mccrimmon - if the doctor can't get the catheter in the subclavian vein, they have to go to the vein in the neck
. I have this lovely tube that you can see under my skin going from my collar bone up about 3 inches. Hope everyone is good - this Xeloda is also having another side effect on me - depression
. Not extreme, but I've just been more down than usual. I tried Effexor awhile ago but it made me so nauseas - does anyone have any other anti-depressant suggestions? I'm also not sleeping as well since I've weaned off my Ativan.0 -
Nothing to see here...
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Suze35 - Sorry to hear you going thru some depression, I'm currently taking Lexapro, prescribed to me by my onc. I like it so far, I really don't think I'd be functioning as well as I am without it. I was also on Pristiq about a year ago and thought that really helped me too, just decided that I didn't want to be on it anymore so the dr weened me off. Pristiq also made me very tired so they told me to take at night.
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Suze- You are exactly right. My onc just gave me the good news today. I took my first dose of Xeloda today. She is going to see me weekly and she said if it is working my pain should decrease within a week. I am sorry you are having depression SE's. I have that already are you sure it is from this? I will ask my onc next Wed. What other SE's have you had and what should I expect? Why did you wean yourself off of the sleep med? I've never taken one but the Oxi knocks me out for 4 hours straight. I woke up at 4 this morning and took a Xanax. I feel like a true druggy. I'm not out on the street yet although I've heard I could make a fortune off of these drugs. LOL
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LJ- I do the same thing (pop a Xanax in the wee hours sometimes). I usually take Melatonin most nights, Ambien on ocassion, and Xanax if I wake up @ 4 am and can't get back to sleep. It usually gives me a few more hours of rest.
Sometimes I feel like I am turning into an insomniac. The days of lying awake wide-eyed in panic are over for me, but I still toss and turn all night, having nothing to do with BC. It's hard to feel rested in the morning.
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LJ - too funny! Glad things are moving along for you.
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LauraJane:
I'm so sorry about the trial news.
Kathy (Kelben) dear me! I can't believe all the craziness. I hope you get your lake condo soon. You deserve it:)Titan:
On the trials--Clinical Trials must be written and filed with the FDA (at least in the US) prior to enrolling any patients at all. There's a pretty strict criteria that patients must meet in order to participate. Even when patients meet the criteria, not all are selected. There are advantages and disadvantages to keeping the patient criteria vague. For example, one might want to try to be vague to enroll many types of patients. But on the other hand, the more strict you are with your patient criteria the better you (as a drug company) can control / predict the results. They may purposely exclude a pt with a cardiac history from a new cholesterol med, since they wouldn't want a cardiac event delaying approval of their drug... so they would carefully write the patient criteria to include people with high and normal cholesterol, but not such a high cholesterol level that they have heart problems...Make sense? Sorry if that was long-winded.
As for me:
I had my 3 mo follow up with the med onc. It was uneventful. They said that I will see them every 3 mos and get mammogram every year (next one due in Nov). I see the BS for a follow up on Friday. I still need to make the RO follow up...it's been over a month since my last radiation treatment.0 -
ssclst..thanks for the info...I've mentioned to my onc that I would like to be in a trial if I could...I want to help..just not myself but others..
Re: sleeping... I toss and turn also..like Heidi...I don't wake up and think OMG I have cancer anymore...but I still don't sleep well either...but I'm not tired during the day so maybe I don't need the sleep...I just try to stay up later...it's almost like I don't like going to bed...it probably doesn't help that I read Stephen King novels and other murder/suspense type books before I go to bed..My son thinks I should read Harry Potter...
Kelben..a lakeside condo sounds wonderful..hope you get to close and move in soon...
HA HA LJ about the $$ you could make on the street with the drugs...along with avitan I have a drawer full of oxy and vicodin from my son's surgery...
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LJ - I'm so glad to hear you have started your chemo, and that the trial is still a go
Titan - I don't like going to sleep, and I think deep down it is because I'm afraid that it is wasting my time, and life. If I only have a limited amount of time left, I'm scared to miss a second of it.
. As for SEs, I've had a lot of fatigue, a bit of nausea off and on (nothing too bad), a little tummy trouble on my off week, a little tingling in my hands, and some headaches. That sounds like a lot, but nothing has been really bad. I'm able to function well, except for the fatigue - I find I have to nap in the PM, or I'll fall asleep where I'm sitting, lol. I weaned off the Ativan because I think I've been a bit spacey and dizzy on it, which can be a side effect from long term use. Since I've stopped, I've felt a lot better in that respect. I know what you mean about selling this stuff on the street, lol. I have something for whatever ails you, a veritable pharmacy! I have like three different kinds of narcotics, all with multiple refills.
I appreciate everyone's input about the antidepressants. I've been managing pretty well up until a few weeks ago, and I've read others have had this issue with Xeloda. The hardest times are at night - maybe I do need to get some Xanax or something to help. Ambien was a nightmare!
Kelben - I'm so sorry you are in this situation, but it sounds like you are doing what you need to do. I wish you a lot of luck with your new place!
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I got great news today, no signs of cancer at all! There is hope for all of us! I am sooo happy.
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