March 2011 chemo-lounge
Comments
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Lily-clear that shingles shot with your onc. Before I started chemo, my nurse practioner friend practically forced me to get a pneumonia vaccine and a shingles vaccine. I did, and promptly got the shingles as a reaction. It was small and we were able to treat it and get rid of it quickly, but it was not fun.
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Fluff queen , I am supposed to get flu pneumonia and shingles vaccine as well. Wondered if i could get flu and pneumonia shot at same time? Want to get started this week. We are already seeing sick kids at school. Also, I had shingles as a kid so not sure if I should get that shot or not. Have also had chicken pox of course.
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I am not sure. I got shingles and pneumonia at the same time and felt crummy for a few days. Also, I don't know how old you are, but I did not check ahead of time and insurance would not cover one of those shots. The NP has written a letter to appeal it, but we haven't heard anything. It was a couple hundred dollars. I think you don't get one of them until you are 60 or so.
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Lily - have you taken your temperature when you have the cold flashes - you should probably do that so you can let your doctor know -
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LIly, I agree take your temperature and definitely talk to your doc. Also, check out the hot flash thread. The ladies there were just talking about sometimes having cold flashes instead of hot. Not sure if it is as severe as what you're describing though. But then when I have a hot flash, it only lasts a few seconds, and some of the ladies on the thread say they last 30 minutes for them, so maybe their cold flashes are similar to yours. The worry never ends, does it?
Penny, Maria and Stilts, thanks for the encouragement with rads. Am looking forward to start crossing them off.
I have to talk to my onc about some new se's too. I am only on Herceptin now, so not sure if it is from that or some how a residual se from chemo, but I never had it before. My legs feel so heavy, it is difficult to go up stairs. And all my joints are sore and stiff, feels like I imagine arthritis feels. I wonder if it could also be because I used to stretch and exercise (not a professional like you Maria, but for me it was good) and wonder if doing that before was keeping this away. I haven't been allowed to do any exercise other than walking since the surgery, but will get okay today to start I think. It's always something with this, isn't it?
Have a great Monday everyone? Silia, where are you? Hoping things are okay with you.
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kay1963-I told my onc that I feel worse just getting herceptin than I ever did on the chemo/herceptin weekly mix. He feels it is due to herceptin being given as a dose dense every three weeks. There is a Triple positive thread with good info.
At my next infusion we are going to do it over 90 minutes instead of 30. Some say that helps a lot. If not, he says I can get it weekly or every two weeks also. I'll start with the longer infusion first and back my way into it.
I've had some shivers too Lily. No fever and don't necessarily feel that cold. Just shivers for a bit. I'm going to ask my onc about it Tuesday. I just thought it was some kind of weird se.
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Kay - are you on Arimidex, it can cause joint pain.
Also are you taking fish oil. Around 15ml of a really good fish oil should help with arthritis like symptoms.I have my second mastectomy booked for 21st November, This one is just a precaution as mine is ILC which doesn't show up well on mammogram. I am pleased it is this year as it means I can hope to start next year afresh.
I hope you are all well and enjoying life, ladies.
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Penny, good luck with your surgery. Thanks for your response. You're so helpful sharing your experiences with everyone. I am not on Arimidex. I think I'm supposed to go on Tamoxifen, but not until after rads are done. They also don't want me to take fish oil until after rads, but I plan on starting right after rads. Right now the only thing I'm on is Herceptin and a multi vitamin and some advil. Wondering if the lymphedema is responsible for some of the aches. However, they're in both arms and legs. Thanks fluffqueen for your response too! I am on the triple positive thread and also the Herceptin side effects thread.
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I have done tons of reading on lymphedema and they are actually working on a cure. A dr in France has been transplanting lymph nodes from the groin area to the axilla area and has seen some success. They are trialing it in the US now in 1 place but i can;t remember where it was.
I get my H tomorrow. It makes me sleepy for a couple of days and is absolutley killing my knees-that is the big push behind losing 30lbs. The knee dr told me way back in Feb the best present I could give my knees was to lose at least 20 lbs. Everybody wants you to lose weight. I am going to the dentist today for a cleaning-hopefully she won't bring my weight up!!
As far as the shingles vaccine. they have lowered the age to 50-it used to be 60. My GP doesn't give it in their office. She says they make them buy 10 dose bottles and charge them $3500. She gave me a prescription and said take it to a walk-in clinic at a drug store. Apparently my insurance co will not pay but i have seen enough of what it can doto make me say I will pay for it myself. I got my flu vac and the pneumonia 1 week apart. I am waiting to do the shingles next week because of getting Herceptin tomorrow. Onc has approved me to get it. I am probably as healthy as i am likely ever to be.
Penny-glad you have a sx date. I am not that familiar with the ILC. Did you have to have an MRI or anything on it before they would agree to remove it?
I am so glad I had both of mine done at the same time. They did an MRI on y "good" one and found 4 things that they said were most likely benign but they would still have to be biopsied. I decided then it had to go. Ins agreed to pay after findings.Being breast free is an easy lifestyle. I have not been fitted yet for foobs-fluid build-up has caused a delay. I am going to wait til after rads to do it. It will be like my wig-I am glad i have it even if it spends most of the time in the drawer. Some days you just want to look normal.
I wish we would hear something from Kymn. I think about her every day.
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Lily - hope the soreness is going away and it sounds like you are doing well with the trainer. I have been trying to do more grains. Like Maria, I am trying to reduce wheat, even whole wheat, as it can cause inflammation. It's a gradual process for me. DSD is more open to new foods and vegetarian options than DH. She and I love the kale chips I make - he won't even eat them! What a great step that you are working with a personal trainer. Our bodies have been through a lot. I agree about Kymn, I hope she is hanging in there. The cold flashes, I don't know about that. I had something like that coming out of surgery, but it was because my core temp fell during surgery and they just kept putting warm blankets on till it got better. Maybe it's the after-effect of hot flashes? I get chilled after a hot flash like Maria.
Penny - yeah on getting the surgery done this year. At least you know what to expect this time with drains and such. Your hair will get there, good for you to go topless. It's very freeing.
Kay - I had the heavy legs. It really came on after my 4 TC chemo treatments and lasted a month, six weeks. I had some joint pain, but mostly just heaviness, like I'd run a marathon the day before. It should dissipate after a while, didn't have to do Herceptin, so not sure about that.
Fluffqueen - they tried to speed up my Taxotere and Cytoxan, and we had to slow it down. I got a bad headache. It was fine once they slowed it down, hoping that is the trick for you too.
Huskerkkc - I'm wondering about getting all those at the same time too. I only have one arm they can use now for shots, which could also be a factor. So many things to think about health-wise!
Hope everyone is feeling well, just popping in to check up on all of you!
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Kymn - please let us know you are OK, we are all so worried about you.
Lily - keep going with the trainer, I know what you mean about everyone wanting you to lose weight - love the dentist comment. I had not problem getting the BS to agree to remove the left. He did a bit of Are you sure - but the insurance is different over here - no lists of what they will pay, if its an inpatient thing, and the doctor says yes, they pay the list price (which is not always enough but its at least a good part of it).
My appointments with doctors go something like:
I have cellulitis and need Flucloxacillin 500mg QID please. They then have a poke around, do as I say and charge me for it.
or
I need the left boob removed, end of November will be fine, and tidy up the right one while you are in there.
I swear I should charge them the fee instead
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LOL Penny! You have a bit of your mum in you. DH's great grandmother, when you asked her how her doctor's appointment was, used to say, Good, he kept my money, and I kept my aches and pains. She was a funny lady.
Lily, thanks for the info on lymphedema. Just what I need, another surgery to fix it! It isn't very bad, so hopefully I'll get it normal quickly and keep it that way. It would be nice if they find a way to fix it permanently though.
Supersally, thanks for the info too. I think it is mostly heavy legs with me. It is just so hard to lift them up the stairs some times. Right now, they are good though, probably the relief from having the simulation over. Tomorrow will be the first rad. I think it will be easier than the simulation. At least I hope so.
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Supersally-how do you make Kale chips? I have tried to eat that stuff fixed many different ways and just can't do it. Put the word chip behind it and I'm there. If you could post the instructions that would be great.
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Love it Lily...I agree. I love chips...any variety. I decided that after I finish the open bag of tortilla chips in my pantry I am NOT buying any more. I am on a tortilla chip kick these days (see...I am human....I eat junk at times too!!). No more chips in my house! I am done!
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I haven't had any energy for technology but do want to give an update. After my 9/15 bilat Mx, I got home in a couple of days. Was surprised that my 2 drains were taken out the morning after surgery (less than 12 hours after!) and the lymph node drain was taken out 4 days later. Think I lucked out there... I was readmitted to the hosp one week after surgery for C diff - a bowel infection that in my case was severe. Stayed in for 5 days and then they said you may still have it for a few weeks but you don't need to stay in the hospital. Found out there are more cases of C diff than MRSA though I'd never heard of it. They think it comes from the antibiotic I was given post-surgery - ugh. Still feel like complete @#$%. Would never guess I'd go through this surgery and then be completely preoccupied with a side effect. Good news is that my wounds are healing nicely. I have yet to look at myself in the mirror - I look down and that looks so bizarre with my little unexpanded TEs but I think I'd be really thrown to look at my actual wounds. I feel like a wimp but guess I'm okay with that. Great news is that my path report was very good. Clean margins, no massess evident though a few micro cancer cells where the two masses used to be pre-chemo, no cancer in the 6 nodes they dissected, the "good" breast showed no cancer. Anyway that's my update. Really hoping my bowels/ colon start to calm down soon and normalize so I don't have to be glued to the toilet. I need to feel better before I can think about rads. Love to all. I read a bunch of your updates today and enjoy all your news as always.
Kymn, my heart breaks for you. You are such a beautiful person inside and out. This cancer experience allows us to see ourselves and others in "the clear light of day". I'm so sorry that your dh is obviously not who you thought he was. While awfully painful, I truly believe that this will open space in your heart and life for someone who DESERVES YOU (he DOES NOT). Sending hugs to you.
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Silia: We have been wondering how you were! I am so sorry you got so sick. That's terrible. I do hope you are on the mend. It is hard to look at the post surgery wounds but it gets better in time, especially once they start doing fills. I hope you get stronger each day and are on the mend. You have had a rough time! Hugs!
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Silia, it is great to "see" you! Sorry about the hard time you had. But your path report is wonderful! Great news!
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Kay: I guess you've started rads...much quicker and easier than the simulation for sure !!! I am now done with the "big zaps" and down to just the boosts on the incision...8 more and I'm done, then start packing for vacation !!!
My bra kind of rubs under my arm where I am the most sensitive and slightly burned so I keep the strap down on that side and use lots of aloe vera gel.I have an appt. at Mayo on November 2nd...kind of a second opinion with Oncology to see if I should be doing anything different right now and also to find out about clinical trials...think I will be busy this week getting all my medical records, scans etc. all in one place to take down there with me.
Silia: hope you are continuing to feel better and stronger and get rid of that C Dif....we see it a lot at the hospital
Would also love to have the kale chip recipe...
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Kay - hope the rads start has been good. By my count you should have 3 down and on the way.
Silia - so sorry for the complications you experiences. The good news is the path report was good and you are healing at the surgery site. Keep us posted and rest up, keep pushing fluids so you don't get dehydrated.
OK, here is the kale chip recipe by popular demand! One thing to watch for is that the kale isn't tough at the store. Whole Foods had organic kale on sale last week even. I've made this recipe several times and you have to be careful with the time so you don't burn it. Let me know what you think!
Kale Chips
1-2 large bunches of kale - washed, torn into bite size pieces, stems discarded
1 Tbsp red wine vinegar
1 Tbsp olive oil
Spices to taste - salt, pepper, garlic powder, Mrs. Dash, crushed red pepper, etc.
Preheat oven to 350 degrees.
Put all leaves in a large bowl. Sprinkle with vinegar, oil, and spices. Use your hands to thoroughly mix and coat the leaves. Spread the leaves in a single layer on large cookie sheet with parchment paper or tin foil. Heat a total of 20-30 minutes, turning with a spatula or tongs after about 10 minutes. Check them often at the 20 minute mark so they don't burn.
Great served warm or at room temperature. If you have any left over, you can try storing them as chips or crumbles to add to quinoa, rice, eggs, etc.
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Silia-I am glad you are home and things are improving! I have been wondering about you. It sounds like things were pretty rough for a while. I hope you continue to heal and feel better.
Kay-How were the first rads this week?
Stilts-8 more to go, woohoo! Where will you be going on vacation? That is great you have that to look forward to. It will make the last few days of rads go even faster.
So those of you who have had your exchange surgery, how do you like them? Do you feel a huge difference compared to the TE's? I got my first fill already on my new TE and the PS said the exchange surgery is so much easier-outpatient surgery and no drains. Was he just downplaying it for me or is it really that much easier?
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Cool-we set my exchange for November 4. It was going to be oct 21 but I had him give me one more fill so he has room to play. Currently 420 and he will decide during surgery if he WANs 400-450s. We talked at length and he also said it was much easier. No drains...he said that is because he will be filling up all the empty space with the implant.
Then we wait 3 months minimum and he makes nipples. I have an area that may need fat grafting and he would do that then also.
I am playing on my new iPad while we are driving to Hilton head. I am going to love thi!0 -
My new silicone implants are much softer than the rock hard TE's. The surgery was same day and such but I get sick from the anesthesia so I almost had to stay over but finally left at 5:30pm....got sick in the car a few times on the ride home. I had no drains. I really like my new implants. They feel very soft and look natural. For those of you deciding on size....just remember they don't project as much as you think. When I wear no bra I look like what I use to look like in a padded bra - like a full B. I barely filled out a B before BC but the padded bras made me look better. I filled TE's to 510 cc's and got 450cc implants at exchange. I am now a D cup. The implants are much wider than you would think - they don't look huge unless I wear a push up bra....then they look like D's. When I first got them I thought they needed to be bigger because they don't project like regular breasts. Now I am use to them and if I am wearing something that I want to fill out more, I wear a push up bra and then they are much more noticeable. Oh and I just wanted to also provide frame of reference...I am only 5'2" inches, size 4, and have a 31" rib cage. These look proportionate to my body and I am not that big of a person. Keep that in mind as you make your decisions on size....510cc's sounded like a lot but then I got a 450cc implant which really does not look that big on my petite body. Also remember that if you gain or lose weight, your breast size won't change at all as you have no body fat there anymore either.
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Silia- Glad to hear you are doing well, and I hope they get the C. difficile business under control. No fun!
Kay- I hope the rads are going well and that your skin holds up really well. It does get tiring, but it's doable. I am over a month done with rads and am still very tired some days.
fluffqueen- just this morning I scheduled my exchange surgery for November 4. My PS kept reminding me that the result would be much better/more symmetrical (I did a single MX) if I did the procedure where they move the back fat, but I am just not ready for that. He also said the procedure is much easier: outpatient and back to work by Monday.
mdg- thanks for the info. The implant I have now actually moved up during rads (with skin tightening), but the new implant is supposed to be softer and he will move it down to match the 39-year old one better. I wonder how low they will have to go!
colodisneylover: when is your exchange surgery?
Have any of you on hormone therapy had NO side effects? I have been on tamoxifen for over a month now, and I swear, no side effects. I was expecting hot flashes, no period, joint pain, insomnia, etc. and have not had anything. I have some concern that it means it's not working. Is that possible? Did they give me a placebo??
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Hi all. I just wanted you to know that I PM'd Kymn a few days ago and I heard back from her. She wanted me to pass along the message. She is stuggling through all of this and trying to figure out the emotional stuff and the financial stuff. She is overwhelmed and exhausted by evening so she has not had the energy to log on and check in with us. I just wanted you to know I had heard from her.
We miss you Kymn! Come back when you can!!!
Maxine: You are lucky. I am battling hot flashes. They suck...PERIOD!
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Maxine: I started Arimidex about a month ago...no real side effects to speak of or complain about either..talked to the NP who says "most women" don't have serious side effects...if they do, they change drugs. I had read other places that side effects can start later so I guess I'll enjoy the fact that I don't have any SE's now !!!
7 more rads and it's time to celebrate !!!
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Hi ladies. I've been MIA for a while. Actually I do pop in occaisonally so I've noted some of the ups and downs in the group lately. It's good to see rads coming to an end for some of you.
I'm still doing herceptin every 3 weeks. I'm now just past the halfway point. No problems. It's just irritating to spend so much time waiting at the hospital. The herceptin runs over only 30min so I seem to get squeezed in when they can get other people finished. I can kill 2 hours waiting to get in.
The Arimidex is going ok. I only notice joint stiffness and hot flashes as SEs. I could live without them, but chemo was worse.
I mentioned a while ago that I was going to do a Master's degree program. That started in Sept, hence my absence. It has been a MASSIVE amount of work. The chemo-addled brain cells have had a workout. Part of me wonders if I'm out of my mind attempting this right now. However it has been a good challenge and I'm pleased with myself that I'm keeping up. Most of the other people in the group are working full-time and I know that I would not be able to manage if I had work to deal with too. Now I'm off to British Columbia after Thanksgiving ( the real one ! :-) ) for three weeks as a full-time student.
Oh and I have decided that I have enough hair that I can call it a really short cut so I've ditched the wig. It feels good to not have anything on my head. It's coming in fast--my DH says he can see it changing weekly. I wish it weren't so grey but I got the hairdresser to clip off all the longer, straggly bits and she said we could try a new ammonia/peroxide free cream colour she has coming in when I get home in Nov.
I hope everyone is at least starting to see the light at the end of the tunnel and can get back to a life not dominated by BC. Saw a great quote by Steve Jobs: "Your time is limited, so don't waste it living someone else's life.0 -
Hello Everyone,
It has been quite a while since I posted. I have tried to keep up with all the posts but have had limited computer time and sometimes I feel that I don't have much to add.
Kymn - So sorry about what is happening to you.
Silia - Great news on the path report.
Supersally - Thnks for the recipe - will have to try it.
Kay1963 -
I am through with everything except Herceptin every 3 weeks until March. I also have had joint pain (which I didn't have during chemo so it is an unpleasant surprise). My onc says there is no relation to the Herceptin but I do wonder.
Question re: Hair color - What is the issue regarding peroxide and ammonia? I have colored mine once with a shampoo in color that had both but now I am wondering if this is a bad thing. Also on the topic of hair mine is long enough to go topless but is so curly that I can't do anything with it and it does not look good. Does anyone have any suggestions as to how to tame very short curly hair. As I write this I am thankful that in the March lounge have all finished and can ask such questions.
Divine - I have noticed that Divine has not posted in quite a while. Does anyone hear from her?
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Well, I hope everyone is having a good Monday so far. I got referred to a neurologist for my feet. Anyone have any experience with this? My oncologists nurse said they'd probably prescribe neurontin. Anyone taking this?
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I Hope everyone is going OK,
Silia hopefully the C.dif has cleared up - horrible after surgery, path sounds good though, particularly the clear nodes.
Kay - you must be well into rads now, it will soon be done and its amazing how well it heals. I was sure my neck was scarred for life but almost no sign now. I have seen both the BS and the RO and they keep saying - so are you over the fatigue. I have trouble pursuading them I didn't get any during rads, but then I did alot of exercise.
I have some hot flashes and a bit of joint pain from the Arimidex, but nothing I can't put up with. So jealous of all your new boobs, but at least when I have two falsies I can put them at the height I want without having to match where the left one is.
pasmith - so pleased to hear you've started your Masters. Thats brilliant.
I love the Steve jobs quote - I read alot of his speech from 2009 and its very inspirational.
I am sorry ladies - Kale chips are not chips. Kale is something my mother forced down my throat as a child in England, it is a requirement that chips are unhealthy.
I am going to a fancy dress party Saturday - as GI Jane. I have the perfect hair for it.
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Hi Penny and everyone!
Silia, I hope you are doing better! That C diff sounds pretty crappy. Haha! I know I'm not funny,
Colodisneylover, I didn't get bad neuropathy, so I can't comment.
pasmith, I wouldn't have the stamina for school now at all. You rock! Good luck with it.
Kymn, thinking of you.
Stilts, good for you for being almost done! The trial sounds good. They are doing a vaccine trial at my cancer center. I think you have to be done treatment to be on it though, and I won't be done Herceptin until next May.
I just finished my 5th of 28 rads. I think I ended up starting a week later than I initially planned. PS wanted a full 6 weeks from surgery and they only start on rads on Monday with my RO, so I was practically 7 weeks from surgery. They have said I won't really see anything until week 2 at least. Is anyone else doing rads now?
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