Calling all TNs
Comments
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Worrywart what a welcome you got after my rant. Remember I said my thoughts were uncharitable. Well they normally aren't thank goodness only occasionally. Your name fits me all over. I am a proper worrywart and I worry over everything. Your cancer would not have been any easier for you than mine was for me. You went through the same thing with just a different stage. Any time that you feel scared (as I do at the moment hence the rant) you can come on here and we will all understand. Its the fear of recurrence that is the worst and it gets to me every now and again, silly I know because what is going to happen will happen but i guess once you have been there once.......
So you come on here whenever you want to because we even have humour at times. Annie xx
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Hi Annie! Thank you!! I fear recurrence as well...I think I read too much...I asked both my oncologist and my surgeon how does someone go from stage 1 to 3 or 4 in a year or so and they didnt really have good answers. Being grade 3 or triple negative I think makes the fear more real as well. I have two beautiful girls at home age 14 in 2 days and 17. They are not babies, but I pray I will see them to their independence. And that I can enjoy that time with them.
You have to be ready to give up cigarettes and sugar. It is not an easy thing to do, especially the cigarettes. I gave them up 23 years ago, and it was the hardest thing I ever did. But keep trying, and one day you will be surprised that you have the commitment to stop. As far as the white sugar, think of it as our way instead of taking hormone pills. If we eat better it lessens the recurrence. I've been doing ok with the eating except that on saturday I took the bunny ears off one of my kids easter chocolates leftover and on sunday i ate the rest of it...lol couldn't help myself. But everytime i eat something healthy I feel like I'm a step in the right directionl This is no easy road for sure.
I read on here someone suffered from anxiety for years, when she was diagnosed with breast cancer she was so scared of recurrence she started eating right, exercising, etc...guess what?? it cured her anxiety..She had it in her all the time, she was never ready.
I dont mind reading the rants, it makes me know we are all human and dealing with a very difficult disease that so many people think is a walk in the park. It makes me crazy.
Hope you have a good day today, as for me I cant get one moments sleep.. Shouldve taken a tylenol pm when i had the chance.
Sending positive thoughts your way....hugs!!!
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Well, its been about a year since my diagnosis, and I was reading these posts and remembering...going out to get a wig fitting, buying a pretty silky scarf and a couple of perky hats to wear for when I went bald. WELL,, when I went bald I sure as heck didn't feel PERKY!!! And I've never worn them. Wore cotton bandannas when it was warm, and knitted caps when it was cold. And the wig sometimes so I wouldn't scare strangers!
Glad to be rid of all that, and comfortable with my 1/2 inch to 1 inch long hair. Strange though...it's not growing any more. My nails and leg hair are very slow growing, too. Anyone else experience that? Nat
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Well, don't know where to start! Just wondering if any other TN have experienced pain under the breast that was affected, like in the rib area, also, intermittent pain under the arm, I have checked numerous times for lumps/bumps and I can't find any. My ON checks me every time I go and never finds anything, but the pain is enough to drive me crazy with worry! Sometimes I wonder if I've been told everything. Not one of my doctors, including MD in Houston, has suggested a PET Scan. I'm assuming this will be done at some point! I've finished 4 dose dense AC and 1 of the twelve weekly taxol. So far, the chemo has not been an issue for me! Seem to be handling it very well. Did lose hair and have some tiredness, but all in all, pretty good! I do find that with the first taxol, I've had some muscle/bone pain, also that is freaking me out because it's mostly on the same side of my body as the cancer!
Anyway, I would just like to hear from any others they may have experienced other "pains" that did not turn out to be cancer!
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Do you still have the breast? Or is that the sight of a surgery? If it's surgery then I have pain all the time in that area...ribs and underarm. I've never had a PET scan but did have a CT scan at time of diagnosis to determine initial stage before surgery.
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Hi Nettie, I have those as well. Friday will mark 1 year since my last treatment and I have sharp stabs in my pit, or upper arm, or my upper back just opposite my cancer boob. I also had a very sore and tender spot just under my cancer boob, on a rib. I had a bone scan, and a ct (that is all I have ever had)Nothing there. My RO said it's either from lymphedema or the nerves restarting post surgery. Everyone has different pains, but we have the right to ask becasue one never knows.
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I also get rib pain, pain on the side of my tissue expander, pain in my back. If u are getting taxol now, that causes bone, muscle, and joint pain. My pain started after my first taxol treatment. I had no pain when I was getting AC treatment.
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Nettie - I get pain too under my arm and chest on affected side, like you I am always feeling for any lump. I had a bone scan last month and it came back clear clear. it is good to hear from others with similar issue. it might just be our body healing after surgery.
I had my #3 TC today, my blood work shows high liver enzyme. Has any one experienced this? I have read about the benefits of liver cleanse and probiotic. please advice if you have tried one or both. Thanks
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Hi, I took Taxol for three months once a week and now I am on FAC once every threes weeks for three months. I go to MD Anderson in Houston and that is their protocal. They say that having Taxol first and following up with FAC has been proven to be the best method. I have BC with mets to the lungs which they removed from both areas. They were both around 2cm. They actually took a lobe out of my lung because the cancer was in a hard area to get to. I did'nt find out about the BC in my lungs until two months after the lumpectomy. It was there all along, it showed up on my x-ray I had before the lumpectomy. Don't know if this helps you. That is just what I was told. I wish my FAC treatments were over. I go in tomorrow then I will be down for at least a week. The first one finally just wore off and here we go again. I ended up going to the ER on Saturday with severe heartburn and dehydration. My BP is really low all the time. 90/56 most of the time now. I will have to ask my Onc. about that tomorrow. I had IVs on Saturday and able to come home. They were quick and efficiate. The best ER I have ever been to. Usually you are there for hours! We left the house about 3:00 and we were back home by 8:30 and it takes a half hour to get there. Pretty impressive. I hate CANCER!!!!!! Hugs and good wishes to all!
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Hi, I posted about a week ago - about my mom who is 73 and had a stroke last year, and now we are faced with a decision about chemo. (TN, Grade 3) As I said, she is not able to communicate normally so it takes some deciphering to figure out if something is bothering her. Yes/no responses can be inconsistent since they are abstract concepts.
Anyway, it seems like the side effects are a huge unknown. Some of your reports make the side effects seem fairly manageable but then I read a post about ER visits or someone had a blood clot in their lung, etc. And, I start to think all over again that maybe it is too much for her (or maybe just too much for me- her caregiver and interpreter of sorts).
Will she be able to go to her physical therapy? Will she have the energy to walk (she walks with assistance)? She is a strong person and made more progress in her stroke recovery than some drs. predicted.
What side effects will be hard for me to decipher? Some I will see -sores, or results of blood tests. What side effects are ones that only she will know (that I can't see)?
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Nettie,
I had rib pain from neupogen shots during AC chemo.0 -
regbeach...these are the same unknowns that any woman facing chemo has. None of us, young or older can predict how our bodies will react to the meds. Unfortunately there is just not an answer to your questions. I am so sorry that you have to deal with this. It is sometimes harder on the caregiver (in my humble opinion) to watch a loved one suffer than to go thru it yourself--my hubby says he disagrees
I hope you can get it figured out soon. Decisions as these are so tough!Maggie
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I also have had rib pain since New Year's Eve and my onc says that it is nothing. What I am wondering about is if any of you that had 4 AC dose dense then 4 Taxol dose dense are still suffering with extreme pain in your hips and upper legs. I completed treatment in January and the pain now is worse than during treatment. I also suffer from pain and weakness in my upper right arm (opposite side of mx). It feels like I slept with my arm hung over the bed but this has been going on for several weeks. I have tried Tyleno #3 as well as morphine and neither aleviates the pain in the arm. I recently lost some of my toenails after all this time and that along with the neuropathy in my feet makes it difficult to get moving in the mornings. How long do these extreme side effects normally last? If I had known that I would have this pain I don't know that I would have even done treatment at all. Normally I have a high pain tolerance but lately feel like a real wimp. Everyone expects now that I am done treatment I should be fine. Sigh, I wish.
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thanks for the info. Linda.
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I don't want to sound Pollyanna but my chemo was doable. I was Dxd at 43. Did dose dense ac x 4 then t x 4. Worked through the whole thing. Day 3 and 4 after infusion I would take off, drug myself and sleep. Friends, laughing, and pain meds made it bearable. I was single and would even date on the good weeks. It was no cake walk but through prayer, imagery, and laughing as much as possible, I made it. You can do it. Take pain meds as needed. Nebulasta has rib pain. But it is short lived. Fight it hard in your head and let people surround you and love you. Working made it better for me. I had structure and an understanding employer.
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Regbeach,
This is a tough decision for someone to make herself, but to have to make it for your mother is so difficult given her limited communication ability. My thoughts are with you.
I am 62, DX TN, stage 1, presently going thru chemo. From my very limited experience, I would think these SE might be difficult for your mother to communicate: nausea, bone pain from Neulasta & fatigue. Most of these can be managed with medication if you know she is experiencing any of them. I am sure you have talked extensively with all her doctors,but you may want second opinions from different specialists.
I hope you are able to take good care of yourself as you walk your mother through this journey.0 -
Regbeach - I had a much more difficult time with chemo than most ladies. I had ACT every 3 weeks x 6 times. Dosage had to be reduced twice because I became so weak I could barely get to bathroom for 2 weeks after each infusion. I was 68/69 years old at the time. Many times I begged my DH to just let me die because I felt so terrible. As you have seen on these threads, lots and lots of the ladies here have sailed through the process. I wish you and your mom the best in this very difficult situation. Jan
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Jan69 - how are you feeling now? I am also curious to know how long it is since your last chemo? I also had my dosage reduced not because I was weak, but due to other potential side effects e.g. neuropathy which I knew I would not be able to cope with, and a very bad rash over my arms and back. I am shocked to hear from some women that side effects can keep coming for a long time after the chemo - they don't tell us these things!
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I get my first rad treatment today. I went yesterday for the dry run with the machine. My arms have to be on such an uncomfortable position that my shoulder was aching. I had a spasm in it at one point. They said the actual treatment would be a few minutes shorter. Hopefully I get the tattoos today and can get these marks and tape off. The drive is 40 minutes each way. Round trip yesterday from leaving to getting back was 2.25 hours.
Work is so stressful right now and I am so very tired. I sometimes regret my decision to work through this instead of taking medical leave. I may have to take a sick day tomorrow to just rest.0 -
I found the 4 DD AC unbearable and had to stop after the 3rd (blood clots) but sailed thru 12 weekly taxols with just fatigue and minor neuropathy of the toes. My fingers were fine. it's 16 months later and the neuropathy is still there but causes no pain, just a little numbness.
For some reason altho I am only 2% ER+, my MO has me on Anastrozole. Believe me that causes a lot of aches and pains. The first year was OK but now it's a royal pain (pun intended). I am 69.
My question is...does anyone else here take Tamoxifen or Anastrozole even when you are TN ...or close to it? I have to decide by October if I want to continue on it. I am waiting to see how my second year mammo goes.
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Schatzi,
I am on tamoxifen for 5-10% ER found following surgery (initial biopsy was triple neg). The tamoxifen has made me gain weight, fatigue, and hot flashes. I also get some muscle cramps but not a lot of joint pain. My sister was on Femara with horrible joint pain so I am going to see if I can stay on tamoxifen as long as possible (I'm supposed to switch next year to arimidex.) 2 oncologists told me it could make a difference and the 3rd said if I had side effects I could probably come off it. I'm scared to come off in case it is helping at all as I was told at one point that I had a 50% chance of recurrence because of my poor response to neo chemo. I'm 52. You might ask about tamoxifen rather than getting off of everything. I think it is not supposed to be quite as effective as the aromatase inhibitors.
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ud45: Chemo is very hard on the liver, so that may explain the liver enzyme result. Check with your doc.
regbeach: I am so sorry for what you and your mother are going through. The Ses you wouldn't see would be nausea (which should be manageable with the right meds), bone aches and pain, and an overall fluey feeling. As well, most women experience weakness and tiredness which might be aggravated in your mother's condition. It is really hard to know until you are in it, how your body will react... often doctors adjust dosages or forego a treatment, as you've heard from some ladies here.
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Regbeach,
One option to consider is to try a single dose of the chemo and see what occurs. You can then stop it if it is unmanageable. As someone else just said, everyone reacts differently to these chemo drugs and also the pre drugs given to help with side effects.
The good news is that aside from the fatigue that is cumulative, people's pattern of side effects are usually the same as they have the first dose. So you can know what you and your Mom are facing after the first dose.
If you decide to go this route I would forgo the port until you see whether you and your Mom are able to continue with chemo. They can give the chemo in the vein, especially with the first dose.
All this is just an idea to consider.
Hugs,
Peggy0 -
Regbeach,
I'm very sorry you and your mom have to go through this. I just wanted to say that all through ac the only time I actually vomited I was just sitting on the couch watching tv, six days after my third ac infusion, and up it came. No nausea or anything, just out of the blue. So, even though she may not be able to communicate if she is nauseous, she may not even know it's going to happen either.
Take care of your mom and yourself.
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christina19...thanks for your reply. My MO said I could never have taken Tamoxifen even if I were not menopausal because of the SEs of blood clots. Good thing I am as old as I am apparently.
I can see you taking Als at 5 to 10% positive. It's a good chance it can help you. At my 2% I doubt it is doing any good. My first year on it, I was pain free...just hair thinning and I am able to deal with that.
My PCP has given me a script for Actonel DR and it just sits in the cupboard. The SEs are so scary, I might just take my chances with more bone loss.
It really annoys me that I am not able to do the housework and gardening that I always did. It just seems to be getting worse. My MO did say if the SEs got too bad, he would say it was OK to stop. It's a crap shoot for sure.
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Hi,
We decided to proceed with chemo for Mom, knowing we can stop at any point if it is too much. The dr. said he will be aggressive with the anti-nausea meds and will give Neulesta from the start. He was not familiar with using Claritin with it (which worried me a little since so many on this site seem to use it to prevent bone pain). He suggested I take her temp 2 times per day to look for any signs of infection. Infection is what I am worried about. But with Neulesta it should be OK, right?
Nausea my mom understands, fatigue will be obvious, she knows "hurt" but hopefully she won't need to communicate it by pointing to something. I go back and forth with feeling OK about the decision and dreading the moments when I will be deciphering if something is wrong or if it's just me freaking out.
She is only getting TC, not ACT so hopefully that will make things smoother too.
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regbeach..so glad you have a plan now. Neulasta is to keep the white blood cell count up to help hopefully with infection. The pain from it was for me the worst part. The doc can suggest over the counter meds to help and if that doesn't work she can get some prescription ones that will! I was only nauseated after 1chemo--my last , but I think lack of sleep and anxiety before were why it happened. All the best to you and your mom...you are a great daughter to take care of her and be her advocate
Maggie
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Ladies I know I haven't posted in ages but today I noticed my breast that I had TNBC in 2 years ago in May, (and had a lumpectomy and radiation on), is all red and brusied especially along the lower crease of the breast. I just saw the oncologist a week ago for a check up and all my bloods were good. I was doing some weird stretching exercises yesterday and yard work in the sun but gosh this is weird. Just writing as it makes me anxious. I get a tommagraphic mammo Tuesday so will see how that goes. I also got the strangest leg cramps last night and got sick to my stomach so I have a constellation of strange events.
When I had my surgery my breast was looked this way about 2 weeks after the surgery....I think it is odd and am freaked out but I do take aspirin for rheumatoid arthritis and maybe I bumped it and did not know....any thoughts anyone?
5th Sib....I worked through chemo althoguh I would take about 4 days off and it was hell by the 4th round of TC. I did it because I had to but I would have preferred not to.
Also my liver enzymes were off until this recent blood work so I guess chemo can do that.
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I am hoping that some of you can help me. Anyone have DD ACT and are still suffering extreme pain in hips and legs? Also weakness and pain in the arm on the opposite side of mx? I finished treatment in January and am experiencing more pain now that what was felt during treatment. How long can one expect these side effects to last? Is this normal?
Thanks.
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Regbeach,
I developed hand and foot disease after my third ac and I have had Nuelasta after every ac infusion. I have also had a sore throat all this week that I may have to have checked out. I'm trying to wait it out as I'm so sick of going to the doctor for any reason, at this point. So we can still get infections. Weird side effects seem to be the norm and they could pop up anywhere at anytime.
Take care.
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