April 2013 Chemo Group

PamelaKay

Koru, congrats on the last TCH! Keep in mind that you are less than 2 weeks out from the chemo, and the effects are cumulative, so your last treatment would be the hardest to recover from. The good news is that it's the LAST of the TC treatments! So once you start the recovery, you won't get knocked down again. 

Annie, I feel the same way. Last fall I had ankle surgery, and I was just about to get back into my normal martial arts routine when the BC hit. Before the ankle surgery, I was in great condition, doing about 8 hours of martial arts a week plus other conditioning. Since then, I've gained 15 pounds and have lost a lot of my strength. I know it will be a long, hard haul to get back in shape, and because of the LE concerns and implant restrictions, I'm not sure I'll ever be able to do any sparing again. However, I am determined that I will do whatever I can as soon as I can to get back in shape.

Lynne, I'll try some moisturizer and see how it does!

Looking forward to my last TH tomorrow!  Then on Friday, I have my first appointment with the thyroid surgeon, starting the next round of treatments. 

Glad you all enjoyed the song. Once something like that gets in my head, I can't get it out until I write it down. 

Off to get my blood draw....Be well, everyone.

Annie54

Thanks 6cats,

I actually had an echo done 2 weeks ago - with a score of 65...so I'm good! Onc felt the shortness of breath was more from lower platelet count. Told me I just had to soldier through my last treatment and everything would improve from there.

Annie

Molinda

Hi Ladies,

Its been awhile since I've been here. I'm so sorry to hear about so many SEs but equally excited to read about the triumphs. I've been MIA due to yet another infection in my left implant which has now been removed completely. What was supposed to be a day surgery turned into a 2 day hospital stay due to my blood pressure being extremely low finally figured out that it was due to a UTI that my body was battling as well. After my 1st sX, I was wearing tank tops with loose fitting button down tops which worked great at hiding the effects left behind from BMX. I'm at a bit of a loss at this point now that I am lopsided one implant and one without. Any suggestions out there? Symmetry is now out of the picture at least for now. I actually saw it tonight for the first time and it looked even worse than I imagined. I'm so tired of this emotional roller coaster and I'm not even sure if I really care what I look like to other people. I feel so defeated since things were going pretty well even with the setbacks. I should have been back to work by now and after all of the delays have happened I'm not sure what we'll do financially I can't expect them to hold my job forever! Although they are being very understanding. I met another medical oncologist last week we will meet with another one tomorrow. To compare treatments. The first one suggested that I do FAC for four treatments, followed by 12 weeks of taxol. Then some shot that starts with an L and the femara. It is all so scary especially by the fact that my body couldn't handle 2 infections at the same time with my immunity system still in tact. Maybe I'm over thinking things but sometimes it is very difficult keeping out the fear!

Thanks for listening!

Melinda

indenial

Melinda, so sorry to hear all you've been through. I wanted to invite you to check out our Flat & Fabulous Facebook group, there are others there who are flat on one side for various reasons and they could give you advice on how to dress! Or check the Living Without Reconstruction forum here if you're not on FB. I know some wear prosthetics on one side, or find shirts with draping necklines, or wear loose scarfs around their necks to kind of camoflage things.

Are you going to be able to finish reconstructing at some point down the line? Or would you consider having the other implant removed? I know many are happy long-term with assymmetry but I know I'd personally have a really hard time with it (I had BMX, no reconstruction, so I'm flat as a pancake but symmetrical and happy with how I look & feel!) I hope you are able to acheive a result you are more comfortable with. HUGS. 

BeHereNow

Melinda, I hear you regarding the emotional roller coaster and about how long this journey is. I know you'll sort things out, but not without the tears and anxiety. I'm sorry you have had such a hard time. BC sucks! Hang in there and be gentle with yourself.



Sending a big hug your way.



Katie

Johnetta

I want to thank all of you ladies for being there during my treatments. I haven't posted much, but have read the posts and been SO encouraged and helped by them. I will start radiation on Tuesday and am hoping the radiation page will be just as helpful as this one has been. I will continue to stalk this one I am sure. 

I have a blog and wrote one on chemo treatments. Here is the link if anyone is interested. And again, THANK YOU ALL!

lessonblessings.wordpress.com/...

shipsgirl

I'm 3 weeks pfc.  I kept my hair though cold caps though it is a lot thinner, and now the new hair is growing in and filling in.  Interestingly, my eyelashes have just started to shed.  I hope they grow back through.

I'm having trouble shaking the fatigue.  I had to climb 3 flights of stairs yesterday and it nearly killed me.  I am going to start doing stairs daily in the hopes that it will help.  Is anyone else experiencing this?  Does anyone have any advice?

MinusTwo

Ginger:  Thinking of you and hope you got through the last chemo w/few problems. 

I had #6 last week with taxotere,carboplatin,herceptin & perjeta.  I'll continue to have herceptin & perjeta for a year.  Lots of tests are scheduled to decide the next course of treatment.  I had a double mastectomy two years ago so they have to decide whether to do more surgery before moving to rads.  Sure am tired of feeling like crap.  Neuropathy is very bad in feet & hands.  Can't stop my nose from bleeding.  Everything still tastes rancid & I can't force down more than a bite or two.  I'm down 30lbs but it's sure not a good way to lose weight, as you all know.  Sorry for the rant - just a bad weekend.

anne11595

Well tomorrow I get my taxol and herceptin. I will have 4 left after tomorrow. I have to push my self every day to get stuff done. My energy levels are low! Just seems sore and tired alot! But this will pass one day soon. My hair is growing back some now! It must be 1/4 inch long now!!!! To me thats the best news.

So everyone have a great week if you can. Hugs to everyone!

shipsgirl

Has anyone noticed changes in their eye sight?  I am 4 weeks pfc and in the last few days I've noticed a sudden shift.  My readers don't seem to work anymore for close up and need to be stronger, but they suddenly help for mid-distance which I didn't need before.

AmyQ

I've not noticed any eyesight changes or problems.  I hope it improves.  On another note, I have a follow-up PET CT scan next week and I'm getting nervous about it.  I hope it comes back clean just like the one between my 4th and 5th treatments did.  I see why people call is scanxiety!

MsPharoah

Amy, crossing all my crossable parts for good scan results. These darn tests definitely cause our minds to go to bad places. I haven't figured out how to deal with it yet, but I am working on it.



Sandra

anne11595

I would have to say that my eyes have been going buggy for a while. But i know i cant have them check while on chemo because they will change again. Its seem like its always somthing going on.



Amy good luck with your scan. Just try to keep happy thoughts going! I will be thinking of you and please let us know how they turn out.



Just got my chemo this week by the hair on my chin. Lol. Blood work just keeps get lower every week. I guess why every week it seems to get harder on my body. But 4 more to go!!! Then good bye to taxol!!!!



Hope everyone has a nice weekend. Hugs to all.

6cats

Annie11595 and shipsgirl -- I've had eyesight changes from the beginning. My MO also said no eyeglass changes until I'm done with chemo (I haven't asked her how long I have to be done.). But the bluriness, bubble vision (I like that much better than dubble vision, don't you), floaters, etc all come and go. I get irritated... but get reminded regularly by my MO to wait.

Taxol/Herception #9 completed yesterday. Uneventful overall, except I got a migraine during the infusion... They gave me a tylenol and slowed down the infusion, but I couldn't really take care of it until I got home. Nausea is worse this time also.. what gives?!

I never shared about #8 -- THAT was an eventful MO visit/infusion... got told by my MO that I was sharing too freely in the chemo room about my side effects and to tone it down (the nurses asked her to tell me). I cried through almost my entire infusion last week. Told one nurse what was going on, but isolated myself so I wouldn't be encouraged to talk. So this week I tried to isolate myself again and two patients came and sat down to visit with me for over 20 minutes each. I am so thankful they came by... I was really concerned that I stuck my foot in my mouth!

Wish PamelaKay was writing this... it would be a great chemogate... but that's my story for the past week! Hope everyone has a good weekend.

6cats

TMI totally

minustwo -- nose bleeding -- I too, suffered from regular nose bleeding, but worse in the morning. I also suffer from perpetual runny nose. My MO suggesting taking Claritin/Zertec, or something similar... that didn't seem to help much except on chemo days when they gave me a second claritin. But, I have found a couple of things that have helped some. Someone on the board mentioned slathering the inside of their knows with Eucerin.. a heavy duty lotion that looks like Vasoline... when I started doing that twice a day, I found that most of my bleeding was coming from the inside of my nose from a tiny scab that would get caked with "buggers", I'd clean out my nose by blowing or with a tissue and here would come the blood! Once I knew where the blood started from, I could apply pressure to that point, and a scab didn't build up that the snot would collect on.... reduced blood, and constant runny nose... progress.

The second thing that has helped is a Z-Pack -- Zithromycin. I had to go on it because of a cat bite, but once I started it, I started blowing yellow "sheets" out of my sinuses, and I'm down to having serious drips only two or three times a day. I think that even though everything was clear when my nose ran, I must have had a slight sinsus infection. I just finished my z-pack this morning... so we will see if the new "non-runny" continues once I stop.

On a different note... I hate neuropathy with chemo brain.... it takes me twice as long to type anything!!

shipsgirl

6cats - you can share here as freely as you like.  I can't believe they told you that.

Ladies, thanks for the input on eyesight.  I'm 4 weeks pfc so I don't get why this is coming up now but it's a sudden and noticable change.  I have changed MO's and see my new one on Sept 18.  I'll wait until then to discuss it.

6cats

One more exciting thing for the week... I had my follow-up echocardiogram this week... no results of course, but see the cardiologist on Monday. I had a slight decrease (9%) in my EF (ejection fraction, still don't understand what that is) after the A/C (7 weeks ago). They said that ejection fraction results can vary by as much as 10% each reading, so had the same technician perform the test this time.... so waiting, and every single twinge for the past seven weeks has been worrying me.... I hate waiting to see if anything is worse... And, I don't know what to worry about, so that makes the worrying worse.

Having a rather negative emotional day... but I'm at home, not in the hospital... I'm able to drive if I want... I'm able to cook dinner if I want... and I can lay on the sofa and surf (and worry more) if I want... so I guess all is well with the world!! But, those darn peaches... the harvest on our ONE tree occurred this week. Last night after chemo I put up 11 1/2-pints of preserves (two canner's worth). Still have about half a bushel left-they are spoiling fast so, even though I can lay around all day if I want, I don't think it is going to happen! Day before yesterday, I made up four pies and froze them. I need to crash badly!

PamelaKay

Ship's Girl, I have had some eye site degradation too. My close-up vision is definitely worse. I haven't thought to ask if it will go back to what it was after I recover from chemo. 

Lynn, I so understand how you feel about being told to tone it down. I've had a couple of similar experiences myself. I find it hard to react with equanimity and brush it off. The best I can do is to try to understand that they weren't intending to make me feel bad. Even so, I am glad that some of the other patients came to talk to you. I think that shows the nurses were overreacting. 

I am impressed that you were able to do so much canning after your infusion. I can't even make dinner. I wonder if some of those extra peaches could be sliced up and frozen for smoothies later? Also, time to e-mail friends and say come and partake. But really, what's a few lost peaches when your body needs rest to recover?

I had an ultra sound yesterday to check for blood clots (swollen feet) which was negative; waited an hour and a half. The only good part was getting to see my favorite radiologist MD (how sad that I have been there often enough to have a favorite). 

My last Taxol was uneventful. Had all the usual SEs. This week I had the first 3-week dose Herceptin (triple what I have been getting weekly). Since I'm only one week out from the last Taxol, it's hard to say what are SEs left over from the Taxol and what is from the Herceptin. Nothing too bad, just some stomach upset and fatigue.

Last week my MO dropped another bomb. She told me it was time to decide about taking Tamoxifen. I was shocked, since I thought it wasn't offered to ER- women. Then she reminded me that, even though the first pathology report said ER-, they rechecked all the hormone receptors after the mastectomy and that had come up as 1% ER positive. I had completely disregarded that, as 1% seemed insignificant, but, apparently, there is some benefit for even such a low amount of ER reception. 

Really, though, haven't I gone through enough? I can't imagine there would be enough benefit from the Tamoxifen to justify taking it for the next 5 years, plus all the side effects. If anyone has experience with this or knows if there is a forum where this is discussed, let me know. 

AmyQ, wishing you good luck on your scan. Thinking about Heather, Kobrien, and Molinda and hoping to hear from them and others in the group we haven't heard from in a while. 

MsPharoah

Hello ladies, I feel so grateful to be where I am. I know that many of you are finishing chemo, struggling with reconstruction or facing further treatment or just resting before the next phase of your treatment. I look forward to hearing about your triumphs.



Pamela Kay, you are wise to do research before taking anti hormonals. The good news is that we can always stop the treatment if the benefits dont outweighs the ses. Just started femara and am afraid to take it and afraid not to....that's what bc is...a lot of crappy choices. No problems so far. I take it at night.



I am almost 5 weeks pfc. Tearing has lessened. I think my hair is growing. My taste buds are back, but some foods still taste funny. I have been having problems with feet and ankle swelling, but I have to admit that only happens when I drink wine. Poo! I have a lot of muscle and joint aches..feel really old. Bone density shows mild osteopenia (sp). I will be starting radiation soon, meet with the ro on Monday.



So my mo did tumor markers before and after chemo and my ca 27 29 went from 18 to 29 . I can't help but worry even though Dr Google says that TMs aren't reliable and can rise for lots of reasons. Have any if you had TMs rise after chemo? Chemo sucked and I am really pissed if it made my cancer worse.





Sandra

6cats

Been a quiet board here recently... I just completed TH#9 on Thursday. It knocked me out! I basically was down and on the sofa or in bed for three days. My dear son, decided Saturday that I must need more vitamin D -- so he put his hammock up under some trees in yard and I spent hours in it, just lounging and reading. I felt so blessed to have him here. I am almost back to normal, but today is Tuesday and chemo is Thursday... not much time to recover. I am definitely feeling the cumulative effects of Taxol these days!

Last week I went for a followup echo, and then saw the cardiologist yesterday. Great news... my ejection fraction hasn't changed any since I started the herceptin! I will still be echo'd every three months while on it, but it looks like the 9% drop we saw was probably due to the adriamycin. The cardiologist assured me that I won't be "dropping dead" anytime soon! Although that may sound funny, I was really stressing out because I had a good friend die about a year ago of a massive heart attack.

I'm curious how many here have regular echos or have had changes in their heart function since they started chemo?

6cats

TMI alert!!! I finally have started growing hair -- first on my chin! now in my nether regions! Hubby calls it "peach fuzz" -- fine white hair.

I am curious about what my head hair will look like... I'm still losing it, but it is also growing at the same time. So I have no idea what is happening! Thankfully don't have to shave pits or legs yet.

Fashion alert -- I'd like to get one classy head scarf (hat, cozy shawl or something) that includes the pink ribbon to commemorate this ongoing journey. I've been looking for a sarong, but can't find one. Any links to recommend? Any favorites you have received?

anne11595

Hello everyone. I will be having no.9 taxol and herceptin today! 6cats im like you. Really been feeling like crap! Still been pushing my self to get any thing done. I get a muga test done every 3 months. So far no changes. Hair on my head is still coming in slow. Most of it is turning grey but it was grey around the edge anyway. But it is hair!



Im not looking forward to todays chemo. But i will sleep most of the day away if I can. Only 3 more after today. Just hope my blood work comes out ok. It has be dropping every week.



Hope everyone is doing ok.

MsPharoah

Hello Anne11595,  I wanted to post today to make sure that you know we are thinking about you.  Sure hope your chemo goes without incident today.  Just keep saying....3 more, 3 more...then 2 more, etc.    I am sad that you feel so crappy.   When I was 3 weeks PFC, I still was very sore and weak but 2 more weeks have passed and I am feeling stronger every day.  I had my radiation simulation and tattoos on Monday.  Good news is that the RO did simulation in prone and supine at my request and he wants to do prone which will reduce radiation to lungs!!!  Glad I asked.  Just waiting for the call that they are ready for first treatment.  I know we are all at different treatment stages, but this is just like the Marines....we can't leave anyone behind!!!  LOL.

Wishing you minimum side effects and lots of hair growth,

Hugs, Sandra

anne11595

Sandra,thank you for thinking of me. Chemo went fine. Liver count was high this time but was just able to get chemo once again. They told me if I could walk for 20 minutes it might help with the fatigue so I will try to do it a few times a day. Cant hurt.I was walking every day and for some reason I stopped.



What is this prone thing. It sound good if it leaves your lung from getting radiation. I see my radiation doc. the 17th of next month so I can talk to him about it.



I'm glad you are feeling better. I will be soon. 3 more left,3 more left I can do it !!!!!!



Hope everyone is doing good.

MsPharoah

Anne, thanks for updating us. I walk about 30 minutes every morning so I heartily recommend it for battling fatigue....but I won't lie, there were some days I couldn't do it, just feeling too crappy, so just do your best and don't beat yourself up. I also use light weights while I stretch each day just for some resistance. I also talk to myself while I walk...just repeat good mantras over and over. I am a person who naturally puts everyone else first...when I walk, my favorite mantra is "me first, me first"



So, there are two positions for radiation...supine (lying on your back) and prone (lying face down with your boobie hanging in a hole...like an MRI. When women have left sided cancer, they often do prone to avoid injury to the heart, but not common for right sided which I have. They will also do prone if the woman has large pendulous breasts in order to make sure the rad field gets all the breast tissue. I asked for it because I am a former smoker and I want to avoid radiation to the lung as long as prone still kills as much cancer as possible. (I am a 36g so I think I meet the pendulous breast catagory...lol) So was happy that the ro found prone to be the best position anyway. I will have my boosts on my back because the boost will be to the tumor bed and they can't do those prone.



I hope that you have 0 side effects, walk every day and....put yourself first. Best to you Anne.

Sandra

daffyc

Just wanted to stop in and say "hi".  I got to go on a little trip to visit some of my family this past week.  It was so good to feel 'normal' for awhile.  Unfortunately, the reason for the trip was to visit my father who has leukemia.  He's had a rough couple of months and his last biopsy was not encouraging to say the least.  He is still fighting, but I needed to see him while I could.  I don't know when I will get a chance to go again.  

My bilateral mastectomy is next Friday.  I will also have 1 lobe of my thyroid removed as I had atypical cells show up there (PET and then FNA determined that).  

I also had something else show up in my latest PET so will be having a colonoscopy in a few weeks as well.  I'm really starting to hate PETscans:(  

I will read back and get caught up later.  I have a full day at the hospital/clinics today.  Appt with my MO, meet with my BS's nurse, and then all the pre op stuff.  Uggh....  Then 3rd grade Open House with my youngest:)

6cats

I want to say thank you to this group... to those who have received bad news, my prayers are with you. To those who have completed treatment, I celebrate with you. To those awaiting surgery, my prayers for both you and the docs are with you.

This forum gives me a place to share my journey. I am so thankful that I can talk about how I'm doing, good or bad. I am thankful that I can get perspective -- it could be worse... but also there are others that have had an easier time than I.

This is a place where we can talk of intimate problems (mine are still ongoing), and laugh with others -- than you all for your humor.

So thank you for being here... Today I survived weekly TH #10 -- only two more to go, then 14 Herceptin only (once every three weeks).

And here you would laugh if you saw what I actually typed first... finger neuropathy is awful on a smaller keyboard!

Thanks again!

shipsgirl

hang in there 6cats.  You are almost done!  I know at the beginning, it seemed daunting. 

MsPharoah

Hello Lynn (6Cats),  Thank you for posting and keeping us informed about your progress.  We started about the same time, but we won't always finish together, sadly.  I feel compelled to cheer from the sidelines cause I know that the home stretch is a bit daunting.  I saw your post about your son....aren't sons the best?  Mine seems to know what my heart needs, or maybe that is me being a proud mommy.

You are almost there.  It's tough but when the chemo is done and you get through the post chemo cycle, you will feel better each day.  It kind of sneaks up on you really.   You can do this and your doctors are monitoring your heart and that is good. 

I don't know about scarves or pink ribbon goods.  I am one of those oddballs who love my wigs...just can't stand to look at myself in a scarf.  I think it is the same aversion I have to wearing jewelry, but don't know.  I gave one of my hats to my 2 year old grandson when he visited, because he wanted to "be like Grandma".  Such a sweetie pie.    Maybe someone will come along with some good tips for you. 

OK, hair because that is sooooo important.  I have had to shave my legs all through chemo...not as regularly but I definitely noticed sparse hair on my legs.  I think my chin whisker may be growing back...Grrrrr.  And the hair on my head is a source of contention between me and DH.  He says that it hasn't grown, but I definitely think it has.  I look closely every day and there is definitely less white scalp showing....not sure what I am going to get, looks like white and gray.  POO!  At this point, I love my wigs...even bought a new one last weekend since it is probable that my new hair will be rather icky, at least at first.

Got a call from the radiologist and I am scheduled for a dry run on Wednesday (9/4) and start rads the next day....34 treatments.  28 whole breast and 6 boosts.  That should kill a lot of crappy cancer!

Lynn, wishing the best for you as you finish these final treatments.  Take good care of yourself.

Best, Sandra

indenial

Those who have been done for a bit now... how has your energy been? 

I'm 2.5 months PFC. Overall my energy is vastly improved & I'm able to do most normal activities... but sometimes I just crash. Feels like it comes on very suddenly, out of nowhere, and I'll literally be crawling up the stairs to bed. The low points last minutes, hours, or days... then I might be fine for a few days... there's no pattern to it! Just trying to figure out if that is normal for post-chemo... I expected gradual but steady improvement, not this crazy rollercoaster!