Has anyone started a forum for Chemo in Dec 2008?

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  • EleanorJ
    EleanorJ Member Posts: 752
    edited June 2009

    Texas Oh my! I can't believe what all you've been through! Keep your eyes on the prize, it's almost over :)

    Swest Walmart! Good Ole Walmart has everything ;) I'm wityh you on the vacation, we're leaving in 2 weeks :) Going to the Outer Banks to test drive our "new" VW Westfalia Vanagon. This should be so much fun. I'm trying to talk hubby into spending $$$ to take a horseback riding beach tour. Quite pricey, but it would be amazing. I don't know if we could get my oldest on a horse by himself, worse case we can slash the cost in half and I can go with my little one. If I could only do 1 thing besides pool/beach, that's my pick! I'm dreaming vacation right now, can you tell? That's all I'm doing, internet research for fun stuff to do. Beats cleaning ;)

    Firni I sure hope you're able to find sometype of grant to help out with school.

  • Texas357
    Texas357 Member Posts: 1,552
    edited June 2009

    Firni, you're right about the next steps. At least all I have to do is get through the surgeries. I don't think there will be many surprise side effects or complications. It will all be pretty straightforward. What a relief!!!

  • lisasayers
    lisasayers Member Posts: 850
    edited June 2009

    Well, more proof to why I don't believe in a "one-size-fits-all" treatment plan!

    http://www.caring4cancer.com/go/cancer/news?NewsItemId=20090610elin018.xml

  • havehope
    havehope Member Posts: 503
    edited June 2009

    Texas,  I am sorry for what you are going thru. Hang in there, better times are coming.

    Swest, cebula : I can't wait for my vacation to come. I am off in July for 10 days.

    I had the port removed today. They gave me a local anesthetic and one time the doctor touched a part that was "live". It was not funny. Other than that it was not too bad, but I hope I don't have to do this ever again.

    Now, I feel that I am done with the treatment.

  • Firni
    Firni Member Posts: 1,519
    edited June 2009

    Lisa, isn't that just scary?  Especially since pretty much all of us here got Cytoxen.

     Wow, I'm just a little jealous of all you luckies going on vacation.  I don't think we're going to go anywhere this year.  Bummer.

    Simvog, congrats on getting the port out.  Too bad they hit a live spot tho.  I'm sure that was not good.  Yikes! 

  • Firni
    Firni Member Posts: 1,519
    edited June 2009

    Today for lunch I had a grilled salmon salad with lettuce and radishes from my garden.  The simple things are so sweet.

  • Texas357
    Texas357 Member Posts: 1,552
    edited June 2009

    Drat! I just another fingernail. That makes 6 -- all of them on my right hand, and now the one off my left thumb. This is making me such a klutz!

  • swest
    swest Member Posts: 680
    edited June 2009

    Simvog - Glad to hear that you got your port out.  For me that was the biggest reminder that I had cancer.  I can't believe he hit a live spot.  That would have freaked me out.  I would have had a panic attack right there.  Take it easy and get some rest.  You will back to your self in no time!

    Firni - I wish I am heading out your way.  Well not real close but some what.  One of my best friends just bought a home about 20 mins. from Gunison.  She has paid my airfare so I would go.  Otherwise I could not afford to have a vacation this year.  I am so blessed to have friends and family that are looking out for my mental health as well as my physical health.

    Texas - It just keeps coming!  I am so sorry!  I wish I could send you some relief for all of the SE's!  Hang in there!!!

    Lisa - Very interesting article.  I hope I'm one of the lucky ones!

  • bobcat
    bobcat Member Posts: 681
    edited June 2009

    Texas - I hope all is getting better as the weekend wears on.  I wanted to answer your nipple question.  I had my nipples done in March and they used skin right over my implants by opening the scar and twisting and stitching to create the "fipple" as we call them.  They look great and do flatten out somewhat but I have had 3 tattooing sessions so far and have one more scheduled.  If is wasn't for the other scars you'd swear they were real and they look terrific.  Nipple recon is just one more thing to recover from but I'm glad I did it because I feel it looks better than not having a center there.  Just my personal feeling. I hope this helps.

  • Texas357
    Texas357 Member Posts: 1,552
    edited June 2009

    Thanks Bobcat, that's exactly how I hope my PS does it. I've read about graft procedures and if that's what she intends, I think I'll take a pass.

    I lost fingernail #7 yesterday. Bit the bullet and ran out to Target for some fake nails, since I was going to a big shindig last night. They are already popping off but they made me feel like Cinderella for a few hours. My hands look so ugly with stubby partial nails that are discolored and have big humps in them. The nurses told me not to use fake nails but I figure every now and then can't hurt since the infection is gone now.

    The tube implanted in my right eye feels like someone is sticking me in the eye with a stick. Hurts, hurts, hurts. I think it might have shifted. I see the doctor next Thursday. Too many appointments in the meantime to try to move it up so I'll just have to deal with the pain.

  • Firni
    Firni Member Posts: 1,519
    edited June 2009

    Oh Texas,  what else??  I don't want to sound like a mom, but you might just want to work that appt. in.  At least call.

    I cut my finger yesterday on my lymphedema side.  I've read and been told so much about not breaking the skin, infection, etc, etc,  So, I'm in this total panic looking for Neosporin.  I knew I should have bought some Neo to go.  Anyway, it's been about 24 hours and my finger is fine with no evidence of infection.  Do we ever get to a point where all this stuff doesn't scare us half to death?

  • Texas357
    Texas357 Member Posts: 1,552
    edited June 2009

    Try to relax Firni. I got a mosquito bite on my lymphedema arm a few weeks ago. I survived and so did my arm. Why is it they warn us about every little thing for lymphedema and yet let us get surprised by so many of the chemo side effects?

  • Firni
    Firni Member Posts: 1,519
    edited June 2009

    Texas, I can hear you laughing.  I think the reason they don't tell us too much about chemo SEs is we might not do it.  We don't have a choice in whether or not we have lymphedema so they can fill our heads with all kinds of stuff.  

  • Texas357
    Texas357 Member Posts: 1,552
    edited June 2009

    LOL Firni: As for me, I'd rather be pleasantly surprised when something bad doesn't happen. Treat me like an adult, don't spoon feed me like a child. 

  • colleen1960
    colleen1960 Member Posts: 226
    edited June 2009

    Just checking in to see how everyone is doing.  Texas I would definitely try and move that appt. up if you are having pain.  Remember with all we have to endure you should not have to be in pain.  Hope everything goes well.

    Have onc appt. Tuesday afternoon.  A little bit nervous, but I guess I will always be nervous before seeing the Dr.   Hope everyone had a nice weekend.

    Have a good week!

    Colleen

  • Texas357
    Texas357 Member Posts: 1,552
    edited June 2009

    I wish I could move it Colleen, but his only other time is tomorrow morning when I've got radiation and my bone density test set up. Treatment is really a full time job, isn't it? I have just 1-1/2 weeks longer of radiation. Woo hoo!

  • Firni
    Firni Member Posts: 1,519
    edited June 2009

    I know what you mean, Colleen.  I see my PCP on Tues, my gyn on the 23 and my onc on the 25th for my 3 month check.  I'm a little nervous about each one of them.  It will be one year on Sat. that we found my lump.  Good luck with your appt. on Tues.

  • Firni
    Firni Member Posts: 1,519
    edited June 2009

    I went to my PCP appt. today to go over labs that he had run.  My liver and kidney functions are super, my B12 is off the charts.  Folate is good but Vit. D is low.  All the other CBC stuff was normal.  He was thrilled that my body has recovered so well from the chemo.  I asked him about my swollen foot and he said compression.  Other than that, talk to onc.  I also asked him about some local estrogen product for some dysfunction there.  He said he'd have to talk to onc.  I told him that onc's PA told me he would say no.  So he called onc on the spot and had a long discussion about quality of life, treating the whole person etc. ( I love my PCP) Onc said yes, IF I try a silicone lubricant called Pink first.  Has to be the silicone not water based.  Onc said I could get it in any sex store.  Not.  I ordered some on line from cheaplubes.com. It really was the cheapest place.  It should be here by the weekend.  I'll let you know how it works.  I know so many of us are having problems in that area.  PCP said if it doesn't work for me or at least relieve some of the discomfort, he'll Rx some local estrogen (now with Onc's blessing).

    I also gave him an online brochure that tells how Wellbutrin  interferes with Tamoxifen.  He felt bad that he missed that.  But so has onc.  So PCP did some quick research and took me off of it and we're going to try Zoloft for awhile.  I was taking the Wellbutrin for hot flashes and doc said Zoloft doesn't help with that. Taking away the Wellbutrin and taking the Tamoxifen I'm afraid I'm in for a journey thru hell with hot flashes.  I was glad to have an anti depressant during this past year, but I don't know that I really need to continue with one much longer.  

  • swest
    swest Member Posts: 680
    edited June 2009

    Firni - Glad you got a good report!  That has to make you feel better psychologically.  Let me know how the hot flashes go.  I'm starting to have them again.  I just don't understand my body right now...no periods during chemo until May which stopped the hot flashes (Yea)....now June no period and back to having hot flashes.   The good news is they are not as strong as they were during chemo.

    I had another fill.  I am now up to 300cc.  Finally feel like I have some boobs.  Today during my fill my right pectoral muscle decided to jump off of the table.  It happened so fast that it scared me.Surprised  So far so good...I am not experiencing much discomfort.  At night I just cannot lay on my side or stomach very well.  I am really looking forward to having a normal looking chest (in clothes).

    Well our board is getting quiet..which is a good thing.  I think everyone is getting busy living their lives and not thinking so much about BC.

  • colleen1960
    colleen1960 Member Posts: 226
    edited June 2009

    I saw the onc today.  Everything went well she did routine blood work and I will get results by weeks end.  She also put me in the system for bone density and also for the genetic testing.  She said that I would be contacted.  So just more tests to look forward to.  But everything else seemed fine. 

    Firni - Glad you also got a good report.  It still amazes me how all Drs. don't think the same.  But it is good that your PCP seems like he is on top of things.

    Swest - My onc said that even though I have not had my period since Oct. there is still a possibility I could get back.  I hope that after going through the hot flashes and all the other menopause things it does not come back.  I do not want to start all over again.  I was the same way when I was getting my fills.  Not being able to sleep on my side.  But it does get better once you have the exchange surgery.

    Stay well - Colleen

  • Firni
    Firni Member Posts: 1,519
    edited June 2009

    Sonia, glad your fills are going ok.  It was hard for me to lay on my side for a few days after a fill.  I had a small pillow that I would kind of wedge under my ribs so I wasn't putting pressure on my expanders when I laid on my side.   I was told not to lay on my stomach at all with the expanders.   How many cc's are you filling to?    I was just reading an article that says women who have hot flashes with Tamoxifen have almost a 50% less chance of recurrence than women who don't have hot flashes with Tamox.  Even if that's true, I don't want the flashes.

    Colleen, My PCP is a god send.  He is so thorough and really makes sure my care with all my drs. is coordinated.  I'm going to talk to my gyn about a bone density test next week.  I know they do them at her clinic.  I hope all your blood work comes back normal.

  • Texas357
    Texas357 Member Posts: 1,552
    edited June 2009

    Hey ladies, I had my bone density test yesterday and got great results. I've had osteopenia for years due to a parathyroid tumor, and it's actually improved with the use of a supplement I found online plus calcium citrate and Vitamin D. I was doing the happy dance!

    I can finally count 5 new eyelashes (if I get out the magnifying mirror and very bright light). I got so excited that I grabbed the mascara just to try to darken them in. It didn't work of course, but it gave me another reason to laugh.

    Now if my head can only stop looking like a chia pet.

  • Firni
    Firni Member Posts: 1,519
    edited June 2009

     Texas, Great news about the ostopenia!!!  I have one really long lash on one eye.  But I can see some lash nubs trying to come out.  It seems like I had more recently, but I guess they fell out.  I don't even own mascara anymore.  I figure I'll have to get new by the time my lashes are there enough for mascara.  My head is starting to look like a chia pet.  But I have that "old man" bald spot in the back.  I noticed yesterday that now I'm starting to grow a dark mohawk thru the bald spot.   It just looks so ridiculous!!  I'm so glad that after all you've been thru, you can still laugh,

  • swest
    swest Member Posts: 680
    edited June 2009

    Thank you everyone for your advice on sleeping with these hard shells for boobs!  I think this fill is going to be tougher than the previous fills.  I am feeling this one!!  Nothing that OTC drugs can take care of.

    Texas - It's about time you got good news!  I'm doing a happy dance with you!!!

    I think I will be talking with my doctor about genetic testing.  Do you have to have a family history of BC to qualify?

  • Texas357
    Texas357 Member Posts: 1,552
    edited June 2009

    Swest, I think you might need family history to have your insurance cover the testing.

    Firni, laughing does make me forget about everything else for a while. I have a big prank planned for next week to commemorate the day that I finish radiation and the end of treatment. But the prank involves sending people a picture of me without my wig. So I still need to muster the courage.

    Here's the scheme: everyone's asking me if my hair is coming in different than it was before. Plus, I've been inundated with pink ribbon stuff. So I want to tell people that I'm quite alarmed because my hair is coming in a very unusual color, and that I think it has something to do with being around so much pink stuff. Then I'll attach a picture of me with my hair dyed a bright neon pink.

    Making others laugh at my expense might just make me brave enough to do it. What do you think?

  • swest
    swest Member Posts: 680
    edited June 2009
    I think that's a great idea!  Laughing
  • sdavis
    sdavis Member Posts: 96
    edited June 2009

    Texas -- go for it.

     I am done with rads and saw my OB/GYN and have a hysterecomy planned for June 25th. My left chest area is still sore and tender but is healing slowly. Chemo effects I expect for the next few years so they arent worth mentioning. Life is going on and I am enjoying every moment,

    Hugs to all who need it

    Sue

  • Firni
    Firni Member Posts: 1,519
    edited June 2009

    Go for it Texas.  You're lucky to have enough hair to color.  I'd just be dying my head.  I'd have to tape pink ribbons to my head and call it hair!

    Sonia, I think Texas is right about needing family history for ins. to pay for the test.  You could call them and see.  For stuff like that, it's always a good idea to get it pre approved.  Your docs. office might do that for you.

    Sue, it's good to hear from you.  Sorry that you still have some chemo stuff going on, but I guess that's the price we're all paying in varying degrees.  I hope your hyst. goes ok.  That's coming up pretty fast.  No one has suggested that to me yet and I don't know if I want to ask.  I'd like to stay away from the scalpel for awhile. 

  • Bold
    Bold Member Posts: 692
    edited June 2009

    Hello. I am glad that we are moving on to different phases of recovery. You are all in my prayers.

    Just my two cents. I had the BRACC test done and my insurance paid for it. I agree to make sure that it is pre approved. I did not have Breast cancer in my family. I was neg too. But still it is a good thing to know. Good luck.

  • horsercn
    horsercn Member Posts: 32
    edited June 2009

    I had the BRACA test done too and ad no family history....I did get it pre-approved first and the results were no thank the Lord.  Just started radiation this week for 33 days so I'm looking alot on the radiation blogs.  I still come here everyday though.  You are all a bunch of wonderful people and I don't know what I would have done if I didn't have this sight to come and talk and listen to all of you.  You are all in my prayers every day.

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