Calling all TNs

5andcounting

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.

Gigi62

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.

JAN69

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

adagio

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!

5thSib

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.

schatzi14

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.

christina1961

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.

Luah

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. 

PeggySull

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,

Peggy

teresa008

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.

schatzi14

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.

regbeach

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.

mags20487

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

Paintingmywaythru

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.

jcolford

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.

teresa008

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.

Stupidboob

I have a question about massaging the chest area after a mastectomy.   I knew from a book by Dr. Northrup that it was not good to massage the breast or the arm if you had breast cancer.    Well, after my mastectomy I was told to massage the area.   I did this faithfully for the whole 2 years and now my cancer is back and up to the collar bone.    My MO says that she sees no reason why if it feels better I should not continue to do the massage. 

Any of you have any experience with this? 

Stupidboob

Susan please keep us informed.   There are a few of us that have had recurrences and are all huddle up on the couch together.   We will scoot over and let you on if need be but we sure hope and pray there is no need. 

Paintingmywaythru

Stupidboob...thanks so much. I am going to see if it fades. I was mwoing the lawn on Sunday with a ride on tractor and remember gripping the wheel really tightly as I had never done it before. My right arm has been sore ever since but maybe I never looked at my breast and I bruised it them. I am going to watch it over the weekendand see if it resolves. It looks a bit like bruising after my lumpectomy but only much leass and more diffuse.

Say a prayer out there in the universe if you can.

Stupidboob

Prayers have been said..............:)

Hopex3

Jcolford...yes! I finished treatment end of December and had double MX in January. I have leg pain just like I did when I was on Taxol. Sometimes, I walk like a little old lady. They say that this pain and the fatigue I am having will last at least a year. I started acupuncture and that has really helped with the leg pain. She told me that our nerves were damaged by the chemo and they are trying to regenerate. I also have been walking 30-40 minuted 5x a week. When I am consistent with walking and the acupuncture, I feel much better. I have not experienced any weakness or pain in my arms. At first, I did under my arm where the nodes were taken out and sometimes I will have sharp pain in my upper arm. I massage it and that helps! It's just a long road for us! One that I don't like being on! Hope I was able to help!

jcolford

Thanks Hopex3,

My onc was very thorough about side effects during treatment but never discussed how long they would last post treatment. My last appointment with my onc was February and I don't see them until December. Needless to say I feel a bit abandoned. Thank goodness for my GP but he even admits that he is not as familiar with taxol side effects. At least he is willing to talk to my onc on my behalf. Thank you for your response. I lurk her often but rarely post. This site has been a wonderful resource for me since diagnosis.

5thSib

Regbeach, my MO said to take Claritan or Zyrtec. I chose Zyrtec since my son uses it. He said to start taking it on the morning of the shot and to take it twice a day for 5 days. I did that faithfully and never had any bone pain from the shot.

Stupidboob

jcolford I did not chime in because I have so many other issues with pain going on but I can tell you that 2 years out and my fingers were still numb.   They only hurt once in awhile but stayed numb.   Now, doing chemo again they are getting worse everyday.   I hurt like Hell on Taxol for days afterwards and then I would feel better but whether or not some of my pain I have today is stil related I don't know.   There are so many side-effects from chemo that do not even rear their ugly little heads until years after we have been off of it.  I do hope you get some relief

Stupidboob

Did any of you who took Taxotere have breathlessness?

inmate4232010

Good morning Ladies,

I haven't had time to read through the posts and hope everyone is doing well today.  I have some good news.  My tumors will be genome tested next week to customize any future treatment options. As I was running out of choices I am so very excited at this opportunity.

Gotta go, but will update everyone when I know more.  

Have a wonderful day ladies.  Love to you all.

d

jenjenl

Inmate - that's great. 

To jump on the good news wagon my bone scan came back clear, which is awesome but I wish I knew why my lower left pelvis hurt.  Dr. thinks it's muscular.

NavyMom

Jcolford:I did TAC for 6 treatments.  I had joint pain for about a year after tx.  I did not have any neuropathy during or after tx but the hip, knees and feet hurt like hell.  I tried to stay active through this time....walking, yoga and strength training.  I am 3 1/2 yrs from last tx and now the stiffness I get is just the fact that i am that much older now. 

Cheers for those with good news and prayers for those in need.

JAN69

Dawn - I often wonder why our tumors aren't checked from the git-go.  It seems to me that that would save us from chemo we don't need and give us a better shot with chemo that has the best potential to work.

Not a question, but why?

My best to you, Jan

LuvRVing

Dawn - that is such good news!!!