Calling all TNs

sweetpickle

I did husband and it was very frustrating. It went away after chemo ended however I have bad eyesight now that I didnt have before.

mags20487

my eyes are terrible now and I had 20/15 vision before.  Very frustrating.  It started during chemo and I had to go to hyperbaric therapy and that set it over the edge.  Doc said it would come back but its been 6 months so not gonna happen.....sigh

Maggie

ALHusband

Thanks sweetpickle and Mags. My wife complained of things appearing to be "melting" in her peripheral vision. Has also had some plain old fashioned "blurring" here and there. It comes and goes though. She's 8 treatments into her 12 treatment plan with Cisplatin and Taxol.

TifJ

Same here husband- vision has gotten worse. It was especially bad while taking the steroids before and during chemo. I am 2.5 years out from last chemo and my vision has changed dramatically.

ALHusband

Thanks TifJ. Sorry to hear that you have some lingering vision issues.

hairlessinakron

I am so glad to hear this is not just me.  I am halfway through chemo of 4 doses AC/4 doses of Taxol and it just seems to be getting worse.  Can't read those small prescription bottles any more.  I was hoping this would pass.  I am doing surgery next and then radiation.

Dx 5/3/2013, Invasive ductal Stage 2A, Grade 2

Titan

not to make light of the blurred vision se...but I was extremely nearsighted before chemo and am extremely nearsighted still....had my eyebrows done shortly after rads...didn't have my glasses on and I stumbled and nearly fell walking to the "eyebrow" chair...I did wear contacts before chemo...just can't stand to wear them now....they just hurt...did anyone else have this?

lmcclure4477

Thank god others have the bad and blurred vision. I thought it was just me and was freaking out! It is amazing how every little symptom makes you think the worst! I am 2 months out from chemo. Does anyone still have chemo brain? It feels foggy and I am so forgetful now!

sweetpickle

My chemo brain is getting better but definately still there. Although Im still taking pain meds from surgery so it might be that.

DorMac

As far as I know, chemo brain can actually affect you for up to 5 years. I am a year out and still have some but, luckily, am retired and don't need to think sharply for work, etc. I remember reading an article that said young career women should carefully consider getting chemo as it could affect their jobs. They suggested that if you had a lumpectomy with large clear margins, you might not really need chemo - but with TN, I don't think I would take the chance.

Doreen

JAN69

I'm more than 2 years out and still batty!  I'm retired, too, but I couldn't still teach if I had to!

TifJ

No matter how far out from chemo I get, I will always blame it when I say something stupid or am forgetful- I refuse to blame it on age!!

InspiredbyDolce

I'm 18 months out, and it's been the past 3 months that I have noticed an excellent change towards being back to myself 100%, regarding side effects.  The part where I would talk, and not be able to identify a word that I had been looking for, has finally subsided.  The 90 minute workouts that used to leave me feeling very fatigued, I can now do them, take a shower and go immediately about my business.  And yesterday, for the first time, I was back to a time that I used to do things like this:  I cleaned the whole house for 8 hours, and then went out washed and waxed one of our cars, which took another 5 hours, in 110 degree heat.  I've always felt pretty good through all of this, but it's been about the past couple of months where I can really feel the overdrive kicking in, and being really close to my former self, but I think yesterday must have confirmed that I'm back to me.  The only thing, is when I saw my Onc 2 weeks ago, he asked me to back off on the exercise a bit after I showed him my mileage log.  He was worried I would need a hip replacement in 10 years at age 55, and then told me that since chemo induced menopause for me, that it can also cause arthritis, etc and told me to take it a bit easier. So our gym is free, but they mainly have cardio machines, so I'm going to check into a commmunity center where I can get some other exercises in, and not have all the daily activity focusing on the same group.

I wear contacts, and have had the blurred vision, where it looks like an entire room or item is melting.  I could never think of way to describe it, but that it's what it looks like, now that I see how AlHusband phrased it.

When I was going through chemo, my husband and I did jigsaw puzzles the entire time, to keep my brain active ... although I've always felt I've had a very entertaining brain! I think that helped though for sure, and it was a great healthy escape from all that was going on. My joint pain post chemo ended within 3 months, but was replaced by workout soreness, (I coudn't walk up stairs), but eventually my body adjusted.  I think it was mostly problematic when I was running on the treadmill, but once I switched to the EFX (elliptical machine) it went away, just took some time.

susaninicking

I'm wondering if some of you can post what your post treatment screenings were like....mammograms, ultrasound, MRI, and what kind of schedule? I'm nearing the end of my chemo and sat next to a radiologist yesterday who said do it all as soon as chemo ends. I've had 2 tumors removed in one breast and she rec's compete pictures since this breast will never internally be the same and suggests baseline pictures. I'm in Germany but feel better hearing about the American system. What is the safest thing be doing for screening in the next few years considering how quickly a TN tumor can grow?

InspiredbyDolce

I am trying to go the route of:  MRI at annual interval, and ultrasound at the 6-month interval each year, so that some screening is being done every 6 months.  Because insurance will pay for the MRI, my BS thinks he can get that approved, and then the u/s would be at my expense, only if insurance did not agree that I'm at a particular risk to need that.  So some screenings may in fact coincide with the risk.  My risk assessment would be the fact that I was dx'd under the age of 45 with a TNBC diagnosis.  So far, insurance has followed that protocol for me, but I also had 'questions' on some scar tissue, so the ultrasound in that instance was approved. My MRIs have been an enhanced imaging type, called Diffusion Weighted Imaging.

sweetpickle

Susan- My onc. And bs take turns seeing me every three months for the next two years and then it will go to every six months after that. We will not be doing scans or bloodwork unless I present with symptoms and we went over what those might be. Basically anything off that I feel for two weeks or more, Onc. Wants to know about. Im comfortable with this as I dont want a bunch of scans that may stress me out or lead to an unecessary test. i totally undestand and respect other peoples approaches. I think we all need to do what works for us as individuals.

JAN69

Inspired - Wow you can go!  I was feeling like such a wimp about what little I do each day when compared to your day.  Then I saw you are only 45.  At 45 I was teaching high school in the day and adult school at night.  In between taking 3 teenage daughters to various events, etc.  My DD expected a homecooked meal on the table at 6PM.  But I wasn't recovering from BC at the time.  I'm 71 now and my body reminds me of my age every day.  So sorry you got your BC so young, but so happy you feel so strong.  Yeah for youth!!!!!

Susan - It seems all doctors have a slightly different view of follow up care.  My original oncologist was scanning me all the time.  That made me feel secure that I was OK.  My new oncologist won't do any scanning until some symptom calls for it.  Now that I realize how much radiation comes with the various scans, I'm sorry that I've had so many.  But I do see your radiologist's point about getting baseline pictures; that sounds very reasonable.  Others on this thread will offer their experiences.  Good luck.

InspiredbyDolce

Hi Jan!  It is a challenge for me to go everyday, but I keep my list on the fridge, so I can keep track and hold myself accountable. Yesterday, I didn't work out, and I thought, regarding all that I had done yesterday: 'this had better count as exercise.' 

There is a lady that I exercise next to sometimes, and she is a 7-year survivor of bc.  She didn't do radiation or chemo, they just removed her lump.  She was on a specific medication though for ER+, but that just ended.  It wasn't Tamoxifen.  She is 75 years old, and you would not know it!  She is amazing, and looks so youthful, and exercises 3x a week. I would have placed her at 50-55 years of age.  I so want to be like her when I get to her age! She is a great point of reference for me to look up to, and I do like working out next to her - she is a lot of fun!

How fun to have 3 Daughters!

Titan

I am over 4 years out...52 months on july 20..to be exact...and I see the onc and bs every six months..mammo every year...I actually didn't freak out about the mammo this year..compared to last year and the year before that....not saying I'm back to normal..whatever that is...but right now the appts. are just something that I have to do..and I don't like them but I do them...I just want to forget this crap ever happened but I know I can't..dang it....not sure what will happen at 5 years out...but I am going to insist on keeping with the every 6 months..well....forever...after the first 2 years..which is our scary time for tn...you tend to maybe relax a little...and start to have hope...that maybe, just maybe things will be ok.....still be diligent of of course...

I remember when I started to exercise..during chemo and realizing that eating right and exercising was something I can never ever stop doing....and well now..I like the shape I'm in....could stand to lose a few pounds..but it will come....physically adjusting is not so bad...it is has always been the mental part of this disease that I have had a hard time with...losing Dawn and our other friends has hurt so badly but it is something we have to accept with this disease.....and part of our mental health is accepting this and dealing with it.

ah..chemo brain...it is amazing how it really does get better...I have worked through it all...and I feel that it is just the past few months that I'm finally getting back to where I was before.....thank God my employers lightened up with me during that time...now though...I feel better and ready to take on more challenges.....

OBXK

Hello ladies - checking in from Chicago on the last night of my bucket list trip. It has been a wonderful trip! I love Chicago, so much to see and do and the weather has been marvelous!



I so glad my girlfriend, who is also my PCP, is on the trip with me.



Love you Annie - I know the loss of Dawn has been hard.



Group hug!

InspiredbyDolce

Well, Karen, I bet you get all kinds of extra insight and firsthand information, since your girlfriend is your PCP!  That is awesome.

Your trip sounds so much fun, and glad the windy city was very hospitable to you! What is your next new adventure going to be? 

kathyrnn

Titan - it's great to hear our TN leader is doing well.



Karen - so happy to hear you've had a wonderful time. Any news back on the testing you were waiting for?

Titan

Hey Kathy...how is it going...know you are going through alot right now..hoping you can get a little poker in...we have going to the casino a bit too much...lol..

placid44

I am six months post-ACT chemo, working full time but very tired. I can walk for 45 minutes or run for 15/walk for 30, but getting up in the morning and then in the late afternoons I am very tired. Sleeping for 10 hours does not get rid of it, although it's better than getting 8. Definitely not my former self. (I am 45.). On the plus side, I've lost 16 lb. so far from healthy eating and no drinking.



How long did this last for others? How long until I don't wake up with swollen head feeling and tired and until I don't have to go to bed early?

mags20487

placid...your signature says it all...surgery in Feb Radiation in March..  All of these things take their toll on us and we must give our bodies time to heal.  Healing takes tremendous energy.  I too am 45 and my recon is just not how I imagined it going so it will be a while before I feel like my old self...much less before I am cleared by doc to exercise.  Patience is the key and follow what your body demands.  Some nights for me that means bed at 9pm and I need sleeping pills to sleep not to mention the occasional xanax   Hang in there.  I was almost there when my recon began so I know it is possible

Maggie

Morwenna

Hi Placid,



I'm wondering if you are really fit to be back at work fulltime?



I saw my breast cancer supportive care doctor this week, and asked her if I should expect to still be off work by November, as I'm planning a trip to Hawaii, and wondered if I should book leave. I will finish three weeks of radiation on August 12.



To my surprise she said she strongly advised me not to consider returning to work until at least the end of November. She then went on to say that returning to work just before Christmas was not a good idea and so I really shouldn't plan to return until the new year. AND that it would take a further three months before I would get up to full time!!



She saw I was gobsmacked, and said that she knew I was planning/hoping to return earlier, but that going back too early leads to immense stress and fatigue, and if people end up having to go back on sick leave it is extremely demoralizing, and really undermines a person's confidence that they will be able to return to the same job at all!



She asked me to reframe my ideas to plan to return "well" rather than "early" to work!



I'm still somewhat sceptical that I shall need to stay off so long, but I guess we shall see! An insurance company is covering my disability payments, and she said they know her well, and will accept her opinion without question when she helps me to make a return to work plan.



Post cancer fatigue is a very real effect, and its the mental, emotional and physical effects of the diagnosis and all the treatments we endure. I guess we cannot necessarily expect to just shrug them off and be back to normal any time soon!



Take care of yourself. xxx

schatzi14

I see my PCP for bloodwork every 6 months...Onc every 6 months and a mammo yearly. Bone density test every 2 years.

He does not do any USs or MRIs or any testing unless symptoms appear. So far, so good! I have not seen my BS since the followup after surgery. That was over 2 years ago. I had a lumpectomy.

I am almost 70 and feel pretty much as I did before all this began...the chemo brain or just old age remains the same! Bring on all those crosswords!

Luah

Morwenna: That was the return-to-work schedule that my sister was advised too. She finished treatment in August 2009, started back part-time (shortened days, 3 days a week) in January then full-time in mid February. I'm self-employed, and didn't have disability insurance, I just worked reduced hours throughout. I think everyone is different in recovery time, but it's worth remembering that your body has endured quite an onslaught and it needs time to heal. For those who can do it, phasing in a return-to-work is a good option to see how it goes.

Re follow-up: At almost 4 years out, I see my onc now once per year, and my BS once per year (6 months apart each). I have an annual mammo, no other scans unless symptoms arise that need investigating. For the first 2 years I was getting an annual MRI too. Bloodwork annually by my PCP.

Re vision: I couldn't wear contacts during chemo, but I returned to them after. I have slight astigmatism, which occasionally gives me blurriness with my contacts; it has gotten worse since treatment, but it may be just natural deterioration. 

Re chemo brain: The head fogginess disappeared a few weeks after treatment, but I still suffer from chemo brain... memory lapses, slower processing and inability to find the precise word (an occupational disability when you're a writer!). It has gotten better over time, but it is still a frustration for me. For example, with memory, I used to forget the simplest appointments or what I had to do that day... now it is more a case of forgetting the gist of a conversation, movie or news story a few days afterwards.  

ALHusband

My wife is now 8 treatments into a 12 treatment chemo plan. Tomorrow will be number 9. You can see that the chemo is starting to catch up with her. More and more fatigue. Some nausea that wasn't previously there. Achy all over. I suspect that these last 3 or 4 treatments are probably just the "steepest part of the hill". Can anybody tell me how long after the last chemo treatment a person should start to feel better? I know "normal" will probably take a while as her body builds back up. But, how long before felling "better" kicks in?

InspiredbyDolce

I think it's different for everyone but defintely just the mental part of knowing treatment is over, will really improve how she is feeling once treatment is over.  I remember mine ended on April 4th, and got the port out on April 30th.  That is when I started to really significantly improve.  We had a birthday event at the end of May, and I remember feeling really good, just tired a bit in the day, but not too bad.  May 30th had tissue expander exchange, and by July 1st feeling great.  So a good 90 days before back into a semi-productive routine, but immediately started feeling better once treatment ended, about 3 weeks later. Took 15 months to reach full 100%, but reached 90% probably with 6-9 months. The treatments are accumulative, so each subsequent treatment could have enhanced effects from the previous one. I've also read that typical time for body to be back to repair after this is 18 months on up to 2 years, for things like the liver.