TRIPLE POSITIVE GROUP

kae_md99

is blurred vision a side effect of herceptin? i cant read the small prints of my bible

coachvicky

Kae md99

A member of my MO Team said they see eye changes all the time with chemo patients. They could not say this was permanent or not.

I've gone from -2.25 to -1.75 in the past 10 months.

Go figure.

Vicky

meg2016

I had a lot of eye issues and my prescription changed during chemo, but its back to what it was before now, I am about 9 months out.

Anonymous

getting my first infusion right now... Everyone has been wonderful.. Port is a blessing

Suburbs

Kae md99, I still have issues with my vision nearly 5 weeks out from last TCHP, but can't be sure if it's the cumulative effect of TCHP or H only. Blurry vision and changes in reading and distance vision. I am holding off on getting my eyes tested for the time being. Thank you Meg2016 and Vicky for the feedback.

DeniseT, the port is something for sure. It saves your veins. I am happy to hear you got through your first infusion. I have had a similar experience with the oncology nurses during infusion - incredible caring and real attention to comfort and safety.

Anonymous

all in all it wasn't too bad. Just really long day. They gave me my pill cocktail... Stuff for my stomach and steroids and a host of other stuff. They also gave me some Attvan to chill me out.

I haven't had any problems yet with the meds. Sx..so far is a lot of gas... No appetite... And wornout due to no sleep and being there 9 hours I have my little Neunesta thing on. It's already injected me... Just waiting for it empty out by tomorrow. I'm all pill up and now resting

Thank y'all for the good wish. I got very good care and it wasn't as scary a I thought. But now on to the next scary thing the next 10 days.. .

Hugs from TN

Denise

deni1661

suburbs - best wishes to you on your surgery next week. I am praying you have great pathology results. Take care

deni1661

DeniseT - glad your first chemo is over, wishing you much needed rest and SE's aren't too bad. Take care

deni1661

Hapb - I still get my infusions through my port and get my blood drawn through a vein. I did not have the bad pain you're experiencing with your port; I would definitely check with your doctor. That doesn't seem righ

deni1661

e12345e - I'm so glad you were able to talk with the director at Stanford and get a better explanation of why you're not getting Perjeta. It sounds like you have a solid treatment plan.

I agree with Hapb, HER2 treatments are getting better all the time and once you get through your treatment you will have many, many years of life ahead of you! I get asked the same suicide/depression question too and I think "absolutely not", I will not let this cancer win!!

ElaineTherese

Infection, HapB? I get my port flushed every month to make sure it's OK. (I'll get mine out five years after diagnosis -- personal choice.)

Blownaway

Not sure if +++ can lead to IBC down the road and I don't like to borrow trouble but.....

About 2 months ago, I started having nipple pain in the breast that had cancer in 2014 that felt like hot electrical shocks on the inside. This lasted for about 3 weeks (just before vacation) then while on vacation, the pain had stopped but I noticed that my old stretch marks had changed from white to red and were puffed out instead of slightly sunken inward. No fever, no heat in the breast. I called my onco to schedule an ultrasound since I had just had my annual mammo in February and she had me see my PCP to rule out infection first. I had the exam, he sent me for an ultrasound after all and now the radiologist has sent me a note to come back for another ultrasound in 1 month for further evaluation. There are no palpable lumps, no orange peel skin. Does this sound like he might be suspicious of IBC in the making? That's all I can think it must be. The other breast is fine.

deni1661

Hapb - wow, port issue sounds terrible. Sorry you're going through that extra problem. Wishing you better days ahead, take care

PatinMN

blownaway, last year I developed some weird symptoms - painful areas of skin like nerves too close to the surface, an area under the breast that was extremely pale, like scar tissue, that hadn't been there before, and rib pain in that area. My MO attributes it all to radiation changes which he says can continue to happen years after the fact. Maybe that could explain your symptoms too

kae_md99

i am now on lupron for 2 months and last week my joints and bones started aching! last night was the worst. is this usual? and im not even on arimidex yet!!

ElaineTherese

kae,

I have no idea. I started my Zoladex (like Lupron an ovulation suppressor) and Aromasin at the same time. I sometimes feel a little stiff and creaky, but that's only when I sit too long in one place. I just make sure I keep moving. Hope you feel better soon!

Taco1946

EYE ISSUES - I waited over 8 weeks post Taxol to get my eyes checked and they are definitely worse and not getting better another 4 weeks out. Glad I have my new glasses and can't wait to pick up the sunglasses. Has anyone succeeded in getting their insurance to pay for new glasses following chemo? I know they will after caterac surgery and my husband gets his eye exams paid for because he is a diabetic.

SE - I don't believe that Herceptin has created any problems for me but have had morning headaches and joint pain after I started AI. Both are controllable with OTC stuff quite quickly. I play golf and started going to a stretch and flex class after my diagnosis. And the dog always thinks he wants a walk even though it is VERY hot here.

Hep - I wish I could snap my fingers and make your journey easier. I know you have struggled with what is the right plan for you. And an infected port certainly can't make your decisions any easier! Thinking of you.

Taco1946

HapB - yes we do share a diagnosis and I think are about the same age (I was 71 in May). This is my first cancer but I did have brain surgery 10 years ago for an intracerebral bleed so have seen a few OR's and have done the PT time. Not fun but I have had 10 years that I don't think many thought I would have. I stopped the Taxol after 8 infusions with my MO's blessing. So maybe it won't be 12 for you either. I had about 10 days between port placement and my first chemo and it sounds like that really made a difference. At the time I wanted them to hurry up and start but many of you have convinced me that the delay on my MO's part was a good thing. I have my 3rd echo and my 6 month mammogram coming up next month.

Taco1946

HapB - you sound like my daughter who lives alone with her two cats. She admits that even if there was someone special in her life, she doesn't think she could live with them. But when she needed minor surgery last winter, Mom was the first one she called.

The logistics of all this really is a nightmare. I think I remember that you lived several hours away from your medical team. And while you're getting the taxol, it does take half a day to let all that junk drip in. We need a Ronald McDonald house for seniors! Are you sure you can't find someone to drive to Boston and back with you? Another thought - I know in our area that there are volunteers who will assist BC survivors - housecleaning, laundry etc. I wish I could remember what the organization is called. As a retired realtor, I know what a challenge getting a house and yourself ready to move is. Can you plan for 2018 instead of 2017? Looks like you aren't scheduled for radiation. If so, getting through the taxol should be the worst. I definitely feel better than I did 2 months ago.

You clearly are a fighter who has learned to pick her battles. I'm holding you close whatever you decide.

ElaineTherese

Taco and HapB,

I'm a relative "youngster" (diagnosed at 46, now 49), but I have seen several older patients struggle to finish their treatment at my infusion center. Due to the convenience factor (too lazy to drive to the university hospital 40 minutes away), I get my treatments at a regional infusion center. (Still go once a month to get Zoladex and a port flush.) It accepts lots of Medicare patients, and I always feel as though I'm one of the youngest patients there. Often, older patients do have to skip treatment that week because their white counts are too low or they arrive, dehydrated. I do think it is harder for older patients, especially those who have multiple health challenges, to achieve their treatment goals. So, you're not alone!

I would just add that staying in touch with your doctors is very important, regardless of whether you finish all of your treatments. HapB, your body's reaction to port surgery and chemo #1 seemed to involve an unusual amount of pain and suffering. Our doctors don't want us to suffer unnecessarily; chemo ladies, please call your doctors ASAP if your treatment is too debilitating!

Tresjoli2

HapB sorry for the delayed response. My 1st allergic reaction went like this, about ten seconds into my infusion: "I feel funny. My stomach hurts. Is that normal? My arms feel heavy..whats happening? Help..i..cant...breathe...." and BAM blue light goes off people come running they stop the infusion shoot me with an epipen and it's overwith...

My second reaction was hypotensive. My MO tried to reduce my steroids. They started the infusion and my heartrate went to over 200 beats per minute. I hit my emergency button more blue lights more people running. They stop the infusion. They load me up with my steroids and try again. Again my heart rate went over 200 beats per minute. At that point MO said enough. We switched to abraxane..no more issues.

Your redness and rash are from the steroids and should improve. Sorry about your port. That is totally shi**y and a sucky thing to have happen. Hugs...

---

Tresjoli2

i have always said the one thing i didnt know about cancer was that it is a series of awful choices. You are always picking the lesser of two evils. But I had a 2yo and an 8yo at the time...i threw everything at it. That's not the right choice for everyone. We all have our individual journeys to walk.

I hope they resolve the port issue for you really soon!

Cowgirl13

Re the timing on port placement before your first chemo....NO WAY could I have had chemo the next day. It was like I had been kicked by a horse for a week..I had planned on doing all these things the week between port placement and chemo. Could hardly do anything. My port surgeon asked me as he was leaving did I want pain meds. I said no I didn't. MISTAKE. I should have asked for them the next day and I could have enjoyed that week.

I don't want to freak anyone out...this was just my experience.

Anonymous

had my port put in on Thursday if this week. Then first chemo on Friday...it all went well. Can't say it's not sore. But I'm surprised at at how well it's done. Tomorrow maybe different but right now I am just a little sore. But being controlled by otc meds.

If I had to do it all again I would wait.

Hap. You've been in my thoughts and prayers

Hugs from TN.

Denise

PoseyGirl

hi Hapb,

I too was sent in to get my port removed after just four chemo treatments. Mine erupted through the skin! It's a pain, I agree! I also was having a bad time and they had a hard time removing it, so I burst into tears and said "I'm having a bad week!!!!" Like a little girl. They were very sweet and one of them held my hand. Ive had infusions through my arm ever since and it's ok (five Herceptin left). So you'll be ok

SpecialK

hap - I am very allergic to adhesive and have had several rashes through the time I have been treated for breast cancer because I have had so much surgery. I have found that allergic reactions to adhesive have a tendency to "crawl" and spread. I was prescribed Rx antihistamine, and also used OTC topical. If your rash does not start to resolve pretty quick, ask your doc for a Rx.

Kattis894

Hi Triple Positive Group, I have not posted for awhile. I just did my yearly control and no cancer was found. A miracle! I read above a few post of the cancer shrinking during chemo, mine didn´t but here I am regardless.

I just had my breast reduction done on my healthy breast since I decided to not go ahead with silicon or anything on the side of mastectomy, I was afraid it was going to be too hard, like a lump of a rock, considering radiation and my age. I am glad of my decision and once this heals in a few weeks hopefully, I think I will be very happy. Still on the herceptin shoots until end October, meeting my onc in a few weeks, but all and all feeling very hopeful today.

Cancer please stay away and never come back! To all you that just started treatment you will get threw it, you just will. I spent many nights on this board and it was extremely helpful.

Tresjoli2

made a big decision today. I have been on Lupron for two years. We said we'd revisit after two years. I brought my MO my GP and another MO into a "quality of life after cancer board".

Our working theory is that my weight gain depression and other issues are tied to the lupron. So we are taking a Lupron break to see what happens (my tamoxifen break made no difference).

It feels scary to let the Lupron go. But I'm only 42 and I don't want this to be my life. They all agree my benefit does not equal the side effects. I wonder if I will get my period back now...not having my period was nice...

My mom is furious with me for giving it up...which didn't help...

ElaineTherese

Kattis!

It's so good to hear from you, and sounding so upbeat! I'm so glad that your recent check-up went so well. Yes, cancer, stay away (from all of us)!

ElaineTherese

Tresjoli2,

I hope your Lupron break gives you a clue as to why you've been feeling depressed and have experienced weight gain. I'm on Zoladex (another ovulation suppressor) and Aromasin (an AI). I initially felt moody, but Celexa cleared that up. The Aromasin has been OK, but I was recently diagnosed with full-blown osteoporosis (and I'm not even 50!). So, my oncologist has me on Fosamax, a biosphosphonate, which can cause osteonecrosis of the jaw (death of the jaw cells). Only after Fosamax fails will she prescribe me Prolia (less of a chance of side effects) None of these hormonal therapy regimens is perfect!

If you stick with the Tamoxifen, I'm not sure that giving up Lupron will make that much difference. After all the SOFT study showed that ovulation suppression + an AI had a greater impact than ovulation suppression + Tamoxifen. Plus, while it might be the older drug, Tamoxifen has long been an effective form of hormonal therapy. ((Hugs)) I hope your depression lifts soon!