Has anyone started a forum for Chemo in Dec 2008?

Options
1969799101102118

Comments

  • Firni
    Firni Member Posts: 1,519
    edited July 2010

    Back pain and tooth pain are the worst.  Just affects everything you do.  I hope too you get some relief soon.  

    I forgot Carie was on vacation.  Hope she's having a blast and forgetting about her bones. 

  • busqueen
    busqueen Member Posts: 176
    edited July 2010

    Well, tried to go on a little post-vacation 'recovery' retreat to my favorite auntie's, but unfortunately I had to come back this morning because my dad had to go to the ER.  He's been admitted for big-time double pneumonia which has become septic.  He's severely dehydrated and had a ridiculously high fever.:-(  Hoping he'll be ok......

    Caroline, isn't today the day you were supposed to find out about your foot?

  • EleanorJ
    EleanorJ Member Posts: 752
    edited July 2010

    Firni, that's great news about the marker test!

    Carie, is your dad getting any better? Sorry :(

    So yes, today was the day, and I found out a big NOTHING! First, my onc gave me a clean bill of health, back in 6 months :) He didn't seem concerned at all about my foot. Then the orthopedist, looked at the MRI, agreed that there is definately something going on with my foot, but the MRI isn't telling him anything so he was a CT-scan done. But he did comfort me about the fact that cancer below the knee is nearly impossible, if it was oin my bone, it would show elsewhere first. Depending on what the CT-scan shows, I might need to get a bone scan done. He is thinking a benign tumor right now. Another 2 weeks before I see him again!

    Bold, I hope your tooth is doing better.

    Carie, I forgot, when do you get another scan done?

  • Mandy1313
    Mandy1313 Member Posts: 1,692
    edited July 2010

    Carie, so sorry to hear about your dad. Hope he has a speedy recovery. How are you doing?

    Caroline: So glad that it is not mets but how annoying that you have more waiting to find out what it is.  Hoping it is "nothing".

    Bold: Get better soon.

    I'm about to leave on vacation---the whole family, hubby, me and my two daughters who are in their early 20s are coming---just a 10 day trip to Italy but I am so excited since we have not had a full family vacation for several years.  And I haven't been to Italy for more years than I will admit---I was the age of my daughters on my last trip!

    Take care everyone and will be back in about 2 weeks.

    Cyber hugs.

    Mandy

  • Bold
    Bold Member Posts: 692
    edited July 2010

    OH have a wonderful trip.Your going to love it. Its going to be hot and beautiful.

    Gee Carie that sound serious with your dad. I pray that he recovers quickly. Hope your doing well.

    Caroline: Still its good news. I am happy for you and hope you get resolution to your pain and discomfort.

    Ugg its only tuesday!!!!

  • Bold
    Bold Member Posts: 692
    edited July 2010

    Oh still on antibiotics and still hurting. Hope fully on Monday I can have something done. Thanks for caring.

  • lovemyfamilysomuch
    lovemyfamilysomuch Member Posts: 1,585
    edited July 2010

    Praying for all my sisters! xo

    Ellie

  • EleanorJ
    EleanorJ Member Posts: 752
    edited July 2010

    Mandy, I wouldn't use the term "just" for 10 days in Italy ;) Have a fun family vacation, it's a well deserved one!

  • busqueen
    busqueen Member Posts: 176
    edited July 2010

    Caroline ~~ AAARRGGGHHH!!  So happy about your good checkup with the onc, and hearing that it would be 'nearly impossible' to have cancer in your foot, but I know how frustrated you must be because even if it isn't cancer, we still want to know what's going on in our bodies!  We're all hanging in there with you.:-)  {my next scan is mid-august....}

    Mandy ~~ I'm so jealous! Enjoy, enjoy, enjoy!

    Bold ~~ I hope your face is feeling a little better.:-)  I actually have dreams of my teeth falling out.

    Ellie ~~ thank you for your prayers, they are much appreciated.

    My dad is actually doing much better.:-)  They moved him out of ICU yesterday and are talking about letting him come home tomorrow.  Thankfully it seems we caught the sepsis very early on, because it is responding so well to the antibiotics.  I will be so glad when he gets home, because his little dog has just been moping around the house and it's breaking my heart!

  • busqueen
    busqueen Member Posts: 176
    edited August 2010

    Hey, where my girls at?

    My dad finally came home on Sunday and there was a grand reunion between old man and little dog.:-)

    My air conditioning in my car conked out this morning.......it's been ridiculously hot and humid here, and I guess it just gave up.:-(

    My kids went to a camp today for a couple nights for kids who have a parent with cancer.  It sounds like a really cool experience for them, and it was free!  woohoo!

    How is everybody doing?

  • EleanorJ
    EleanorJ Member Posts: 752
    edited August 2010

    So glad to hear about your dad, that is great news. Sounds like a great things for kids, maybe it will be helpful to them to know that they're not alone.

    I'm getting my CT-scan of my foot tomorrow. Otherwise keeping busy. Sorry about the AC :( We need a new car all together, ours is... well.. it's bad! And we're tired of spending money on it, problem... we are unwilling to finance a car!

  • Bold
    Bold Member Posts: 692
    edited August 2010

    Hi sistahs.I'm just checking in and letting you know I thinkin of you. I need to get my hair done soooo bad but the last time they did the extensions it cost 300.00 big ones so I scared to go in. Ha. I have a new girl that wants to make extensions out of the hair that was long and cut off after the dreaded 2nd treatment. Will see. Hope everyone is having a great summer!!!!

  • Firni
    Firni Member Posts: 1,519
    edited August 2010

    bold, that would be great to make extensions out of your own hair.  Mine wasn't very long to begin with so it wouldn't have been good to make anything.  Well, maybe braided into those bracelet things.  

     Caroline,  Hope the foot scan went ok today.  Let us know.

    Carie,  So glad to hear that your dad is better and back with Fido.  It sounds like overall, you're having a great summer.  Well, except for the AC thing with your car.  Mine went out last summer and that was the one thing, I didn't care where I had to get the $ to fix it.  It HAD to be fixed.

    Mandy, Hope Italy was awesome!!!!!!!!!!!!!!! 

  • EleanorJ
    EleanorJ Member Posts: 752
    edited August 2010

    The scan went well, besides for the fact that I almost burst out in tears when I got back in my car. I think I've had more scans full of radiation done since cancer (a year!) then I ever did in my life before :( They keep covering you all over to protect your body because, let's face it, those scans aren't good for you. I feel like every few months I have a battery of tests done. I never use to go to the dr before cancer, and now that highly irritates me and I feel like my body will never be the same again. Then I read studies and all about how bad radiation therapy is for you and that the bad outweighs the barely existent benifits, and about chemo and it makse me sick that I've put my body through all that. When you're first diagnosed with cancer, you want it out and done and fast, I wish I wouldn't have been so scared and had taken the time to really read about it all. I probably still would have done chemo, but I'm about 95% sure I would have opted out of radiation and I'm so thankful I put my foot down and refused Tamoxifen. What is done is done, but when I think about it, it makes me sick and furiates me that I didn't take more time. At least I didn't let them talk me into Adriamycin! Phew!! LOL! I guess it's just one of those days :( I'm back to mostly being my normal self, my hair have grown beyond belief and since I waited a whole year before a cut, it is looking like a normal cut I could have had in the past. When I look in the mirror, I no longer see cancer, then every few months, comes a round of tests because my body is now acting up :(:(:(

    Sorry about ranting, I should have a nice glass of wine, but we're out :( LOL! On the bright side, my CT scan CDs should be ready for me in the morning along with the report for me to read and not understand! Then again, a few click online to panic me trying to understand... hehehe

  • EleanorJ
    EleanorJ Member Posts: 752
    edited August 2010

    By the way, Carie, I can't wait for you to have your scans. Praying for a good clean report :)

  • Firni
    Firni Member Posts: 1,519
    edited August 2010

    It is all frustrating isn't it?  I still seem to go to the dr at least twice a month for something chemo related.  Where are those studies?  The weird long term effects of chemo?  I'm so happy that when you look in the mirror you don't see cancer any more.  Huge psychological boost there.  Since my hair is still almost non existent and my brows are still gone and my lashes while there, are so blond they can't be seen.  Add the mastectomy scars and the somewhat not quite right shape of my reconstructed breasts, naked just out of the shower, my body screams cancer.  The damage that is done to stay alive.  Blech.

  • busqueen
    busqueen Member Posts: 176
    edited August 2010

    Firni ~ you are beautiful. don't ever forget it.

    Caroline ~ we have a right to rant. its in the cancer constitution.:-)

    I can feel "scan anxiety" creeping in.  I know I should be optimistic because my pain has improved so much, which theoretically should mean that the cancer cells are dying.  Sigh.  Will be happy to get it over with.

  • Firni
    Firni Member Posts: 1,519
    edited August 2010

    I think the cancer constitution needs a few amendments.  Smile  Not to ban rants tho.  Never that.

    Carie,  Thank you.  Having your pain lessen should be a good sign.  I'm glad you've been able to do some fun things this summer to get your mind off cancer.  

  • EleanorJ
    EleanorJ Member Posts: 752
    edited August 2010

    Oh Firni, I'm so sorry the isn't growing back as you wish :( But to make it clear, I don;t look at myself in the mirror naked ;) I still have a big scar going across my breast, even though my BS did a great job, it's still a roughly 2.5-3" scar! And the port scar, well, it's just big, rough and ugly, but even when the port was in, I decided I wasn't going to try to hide it or I would have had to get a complete new wardrobe! It's quite high, so yeah, I went out through chemo with a huge bump sticking out of my chest!! At least now, it's flat, but I try to not let it bother me. I really try hard to not think cancer anymore. I hope your hair start growing soon so that you can feel the same way :) You are taking hormones right now, aren't you? Is it suppose to affect hair growth?

    Carie - That is WONDERFUL that the pain is going away!!!

    So my foot... I got my films & report yesterday. It states that it could possibly be a bone island? I've read about them, benign condition, but... in a symptomatic patients and patient with a history of cancer, they often do a biopsy on them to be sure as they can mimic a cancer tumor and by misdiagnosed. Also, bone island don't show on bone scan? Not sure why, but they don't, so if I was to have a bone scan and they can't see it, than it would mean good news. Still painful though, so I might need surgery either ways. I have a follow-up next week, but I'm trying to talk them into sending me for the bone scan first, instead of going, forking out $25 to be told that I need a bone scan before making a decision on what to do! I'm hanging in the thoughts that cancer rarely appears below the knee. But it hurts, yesterday was a bad day, pain and swelled up by night time, and now is still quite painful :( More waiting, probably more testing...

  • Firni
    Firni Member Posts: 1,519
    edited August 2010

    You know, sometimes it's nice having a conservative dr.  It does avoid unnecessary procedure and even surgeries.  BUT it can be so frustrating at times.  Especially after all we have been thru, we sometimes do know better.  Good luck Caroline getting the scan and avoiding the extra office call.  Not only is the waiting and going to the dr. office more money, but it's additional time in pain.  At this point if it was me, I'd just go straight for the surgery.  They can do a biopsy then.  Island gone, recovery begun and move on.

    I am taking Tamoxifen.  It can cause hair loss.  However, I was a bad girl and took a three month vacation from it to see if the joint pain would go away and the hair would come back.  Big no to both.  I started taking the Tamox again because my Oncotype DX was so high.  I'm scared not to take it.  My thyroid was really low at my physical two weeks ago.  So that may be the culprit for so many symptoms I'm having that sometimes make me feel like I'm still on chemo.  I go back 8/27 for another check and then hopefully a referral by Sept.  More conservativemess.  If PCP would have referred me to an endocrinologist in Dec when my numbers were on the very low side of normal, I'd probably be feeling better by now.   

    Good luck and prayers for all of us in our never ending quest for pain free health! 

  • Texas357
    Texas357 Member Posts: 1,552
    edited August 2010

    Hi all, just checking in because I too have been having a wild ride. In April I had my nipple reconstruction followed by tattoos in May. Then I got an infection on the rads side, surgery to clean that out, followed by a massive hematoma that never would heal. So last week I started a complete reconstruction do-over on the rads side with an LD Flap and tissue expander. My arm, which had been super good for months, is very swollen and sore. Oh boy.

    I have a tip that may help those of you with bone troubles. I'd battled osteopenia for about 5 years prior to BC because of a benign parathyroid tumor. I had a bone scan just prior to chemo, then again a few months after finishing. Despite chemo, and being basically immobile for months, my hip bones actually gained density. The only thing I can attribute it to is the Strontium Citrate that I have been taking in addition to calcium/Vitamin D supplements. You have to take the Strontium four hours in between any calcium intake. I was very pleased. My spine measurements had remained stable. Do a search for Strontium renalate research in Europe. That's a patented formula not available in the states, so strontium citrate is the closest we can get as far as a delivery method.

    I had another bone density test done about a month ago but haven't been back to the doctor to get the results yet. I'm using Femara which also does a number on bones, so I'm trying to keep close tabs on things.

  • Firni
    Firni Member Posts: 1,519
    edited August 2010

    Thanks for that tip Texas.  I'll check it out.  My spine is so close to being osteoperosis and I'm having a real hard time with muscle fatigue when I try to exercise.  I feel like I need something to help my poor bones or by the time I'm 60, I'll just fall apart like a science class skeleton!

  • EleanorJ
    EleanorJ Member Posts: 752
    edited August 2010

    Sorry Texas, I hope it all gets over soon.

    So... went to my follow-up today to find out a big nothing! This is getting so frustrating. I called last week to check if I needed a bone scan before going in, they said no. So I went in today, checked the CT-scan and, he thinks it might be osteoid osteoma, but he's unsure, so he says... "Well, sometimes those thing show better on BONE SCAN!" Urgh! But at this point, after 2 $25 copays, and still knowing nothing, he says he can't really do anything for me, so he's refering me to a bone specialist who will know what's going on (so he says!). He's pretty sure it will need to come out, I want it out anyhow, it was so painful over the weekend that I could barely walk. He is still sticking to the no cancer but with the history better safe than sorry, if it comes out, the bone guy is the one that would perform the surgery. Waiting to get, yet, another appointment! The creepy part is that the bone specialist is at the cancer center I was being treated, so I will have to keep breathing and not panic that I'm in that place for a bad reason. I have never been so frustrated with doctors & testings before, initial visit & x-ray was 6 weeks ago! I'm not stressed about it anymore, just in pain and thinking it would have been a lot easier to deal with this this summer, not sure what I'll do with a cast having to drive & pick-up my kids to school everyday (no school bus!)

  • busqueen
    busqueen Member Posts: 176
    edited August 2010

    Caroline, I'm so sorry this is turning into such a frustrating ordeal for you.  It seriously sucks.  Don't these people understand that it is not good for our mental health to not know exactly what's going on in our bodies.  If you need me to come and slap somebody for ya, I'm there.:-)  It would probably make me feel better too.  Hang in there, sister.:-)

  • Texas357
    Texas357 Member Posts: 1,552
    edited August 2010

    Caroline, keep pushing and keep breathing!

  • Firni
    Firni Member Posts: 1,519
    edited August 2010

    Caroline,  I feel your frustration.  I went thru the same run around with my swollen foot.  I saw Onc, PCP. podiatrist, physicatrist, LE specialist, had xrays and US.  NOTHING.  No one knew anything.  So, I still live with it.  But I have no pain.  Having the bone specialist in the CA center is creepy.  I'm sure it will not be a pleasant experience sitting in that waiting room!  I still say, go for the surgery.  Get it out regardless of what it is.

    Carie, you go girl.  You can come and slap my PCP while you're out taking care of Caroline's Dr.  My thyroid is so low (.3) that I feel like I'm on chemo again.  But my PCP is still wanting to just do blood tests and watch it instead of referring me to an endocrinologist.  

    Everyone, together,  Breath in....Breath out. 

  • EleanorJ
    EleanorJ Member Posts: 752
    edited August 2010

    Thanks girls, I knew you'd all understand :) And I might just take you on your offer Carie, that way I'd get to meet you in person as a bonus ;)

    Firni, sorry to hear your foot is still swollen. Which end of the foot is it? Toes or close to the ankle? I have finally found the PERFECT garment for my foot, they're not cheap, custom-made by Juzo. They're exactly like the one you had told me about last year, but it's a thicker material and they don't slip much of my foot and offer more compression. After insurance, they're about $100 a piece, luckily last year I had met my OOP so I didn't pay for them, but I wish I would have figured out they were my favorite, I only have 4. But at some point, it's a medical device not some luxury item, so I'll have to get more. I hope you're able to fond some relief.

  • Firni
    Firni Member Posts: 1,519
    edited August 2010

    The part of my foot that swells is from the base of my toes to my ankle.  If I wear compression on that area alone, my toes swell.  My ins. doesn't pay for any compression garments.  The toe cap I use is $75.  I only have two and wash one every night.  I do use garment glue to keep them on.  Then I have to wear a compression sock at least half way up my calf or my leg swells.  I have some socks from Juzo that I have cut the toes and heals out of so they aren't so hot.  Which makes my foot swell.  Vicious cycle it is.  Not attractive in the summer, but it seems to do a pretty good job.  While one shoe is a little tight and the other is a little schleppy, I can still wear the same size on both feet. Happy dance for that!  I've pretty much given up hope that it will ever get better.  I've just learned to cope with it.

  • EleanorJ
    EleanorJ Member Posts: 752
    edited August 2010

    Firni, I just sent you a message, I have 2 of the garments you have that I don't use and can mail to you if you want them. I feel for you having to handwash them every other night! Do you wrap your foot at night? I got to the point where I found a garment that works for me. It doesn't fix it all completely but it gets it under control enough that I can keep living normally. I've just about made peace with the fact that the LE will never go away (Took me almost 5 years to get here! LOL). Now if I skip a day wearing it, boy do I pay for it!

    Update on my other foot! I finally got an appt with the other guy and guess what... he wants me to get a bone scan! He was going to see me next Wednesday, he works at the children's hospital here, but once a week for an hour and a half, he sees adults at the cancer center! But I'll be away visiting family in Canada, plus I have a wedding to attend, so I'm still going and I won't let my foot ruin my vacation. With that said, next available date is September 8th! At least he wants me to get the scan before going in! So, I'll be getting my bone scan when I get home. At this point, they better tell me something and make a plan of action before there isn't any other test I can have done!

  • Firni
    Firni Member Posts: 1,519
    edited August 2010

    Caroline, thanks for the offer.  I replied to your message.

    So sorry that it's taking so long and so much fol de rol to get your other foot taken care of.  At least you'll have the scan and can see this specialist and get on with it.  Good for you for not letting it ruin your vacation.  But wouldn't it have been great to have it all taken care of by now?  A pain free vacation.  What a concept. 

Categories