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Diagnosed with IBC

24

Comments

  • Mamiya
    Mamiya Member Posts: 151
    edited January 2016

    Geeper,

    Looks like a good list of "stuff." Immodium is for diarrhea isn't it? Or maybe they make another kind that I am not familiar with. I use miralax for constipation and senna if it gets really bad (hardly ever used the senna).

    My doctor gives me a printed "calendar" that shows when to take the various meds, but I do get a steroid which isn't needed for taxol so you may just be in a "take as needed" situation and not need to track it so carefully.

    I had no problems with taxol, I hope the same will be true for you. I mean, I lost my hair, but other than that I generally felt good and rarely even had to take anti nausea pills. My biggest gripe with taxol was the benadryl they give you beforehand, that made me so loopy and tired!

    Good luck tomorrow, people will be thinking about you.

  • Mamiya
    Mamiya Member Posts: 151
    edited January 2016

    BTW, that first port access is probably going to hurt, even with the lidocaine. Your tissues are bruised around it and no matter what, they have to kind of push on it a little. Just wanted you to be ready. BUT, after a couple of weeks it won't hurt at all. I don't even use the cream anymore.

  • traveltext
    traveltext Member Posts: 1,055
    edited January 2016

    I'd be surprised if Kicks didn't have a lump to begin with. I had a lump that developed into classic IBC. My BS said no surgery until the inflammation was under control. My chemo treatments worked from the start and the BS was faced with a tiny tumor and perfect skin that allowed her to do her thing with great care and skill.

    To my surprise, my chemo side effects were minimal. One great piece of advice from my onc was "never have preconceived notions about any stage of treatment".

    Take heart from the people on this post who have been there done that. Brilliant people, in fact. Good luck for tomorrow.



  • meadow
    meadow Member Posts: 998
    edited January 2016

    Geepers, you have great advice above. I was able to stay ahead of constipation by drinking grape juice the day of treatment and the day after. I like grape juice so this was easy to add to my diet. My Onc prescribed Emend for nausea, it was administered in my IV the day of treatment. Also steriods will be on board, this is standard, it helps with nausea and your system will pump the chemo through your body in the steriod rush. If you feel like the steriods are too much, this can be adjusted. This is the standard care I am familiar with, You can ask what is being given to you tomorrow, for nausea. Also a Neulasta shot was given the next day, (24 hrs later), a bone marrow booster for white cell production. I had AC first, then Taxol, and I admit...Taxol was a challenge. But very do able. I embraced it as an ally, not an enemy, as it was helping save my life, but I did not feel good at times. And it sounds like you have great support. Way to go hubby for hustling them along.

  • WinningSoFar
    WinningSoFar Member Posts: 126
    edited January 2016

    Dear Geepers,

    I had Abraxane (taxol) and Avastin on a clinical trial, then had to stop the Avastin and continued on Abraxane only. It took me to NED after a couple of cycles. Then I had a spot show up and went back on Abraxane and after 3 cycles, was NED again. Abraxane works well for me, and if needed, I will use it again.

    After six months or so, I had a mastectomy because all the cancer was gone (for the moment anyway). Then a year and 1/2 later, had reconstruction. I think the surgeon wants to make sure that the cancer is gone from the breast (or nearly gone) before they go cutting into it.


  • Mamiya
    Mamiya Member Posts: 151
    edited January 2016

    I felt that taxol really worked for me. I'm literally not done yet but I may go back on taxol for a bit if the FEC isn't working. The first few taxols were like world war three inside my flesh, it was kind of neat. I have heard of lots of people who do AC or FEC and then taxol, I did it the other way around and the carbo was aimed at the triple negative SO "just taxol" to start may not be that weird. Oh, also, I did not initially have a lump, I had a sheet of mass that was about 10cm by 6cm. That is now a "lump" that is about 2cm. We are all different! Again, good luck tomorrow, I hope it is a positive experience because you are on the road to wellness

  • kicks
    kicks Member Posts: 319
    edited January 2016

    Traveltext - I did NOT have a 'lump' before DX (or at DX).. I had had my annual mammo less than 6 weeks before my IBC DX - no change as from previous years - NO 'LUMPS'. Mine presented as an enlarged lymph node. IBC usually (if ever) presents as 'lump' but developes as a 'nest' or 'bands' which have no margins. (Perhaps men developed it differently than women.)

    My surgeon (along with my Chemo Dr) said that neoadjuvant Chemo had to be done to get a 'lump' (with margins) to form and shrink so he could GET if out surgically.

  • Geeper
    Geeper Member Posts: 91
    edited January 2016

    Hi Notdoneyet-

    Ha, Ha! Sorry, I meant to say "immodium" for diarrhea but I am going to add Miralax for constipation since I don’t know how it's gonna go. 

    The nurse is supposed to give me a printed "calendar" with my appts. and treatment dates. I will ask her to add this to the calendar if she doesn’t add the various meds.

    I hope I have no problems with Taxol. I know that I will lose my hair but I'm okay with that. Thank you for telling me about the port access. It all started with a mass, and thickening around in the areola. I then proceeded with the breast exam and felt the mass close my underarm. My breast went through this weird transformation in just days. I have the nesting/sheet. 

    Thank you for wishing me luck and thinking of me. I appreciate all your tips. 

    ___________________________________________________________________________________________

    Hi Bon-

    It's okay! I really do need to get a 2nd opinion/referral and seek good medical care. My oncologist has bad bedside manners, no sense of urgency, and will not look at me in the eyes when he speaks to me.

    It does matter what you have to say. I know that you are just looking out for me. I did make note of all your tips. My friend is battling sarcoma (she had a tumor next to the brain) and  going through radiation. She has bad mouth sores and the roof of her mouth is burned, since they are focusing on her face/head. I texted her and told her to get the script for Magic Mouthwash because the Biotene is not working. This was a great tip. I am swinging by a 7/11 or gas station in the morning and getting me lots of ice. I will take the ziploc bags with me. Thank you for being concerned. 

    ___________________________________________________________________________________________

    Hi Traveltext- 

    Thanks for the advice. I agree that everyone here is brilliant! I take everything everyone tells me to heart. I hope to one day be giving the same advice and great feedback. Thank you for wishing me luck. 

    ___________________________________________________________________________________________

    Hi Meadow-

    I agree, I have awesome advice! 

    I suffer from constipation but eating all these veggies and drinking a lot of water is keeping me frequent. I got prescribed Compaxine and Zofran for nausea and bought a motion sickness bracelet .I'm so glad that both you and Bon mentioned that "rush" from the steroids. Here I would be thinking that I feel  great and overworkmyself the 1st two days. I would have been in for a rude awakening. 

    I do have a great support system. The hubby is Papa Bear and is looking out for me. Poor thing is taking it a lot harder than I am. 

    ___________________________________________________________________________________________

    Hi WinningSoFar-

    Wow, this is great to hear! I am glad to hear you are doing well. I love hearing stories like this. 

    ___________________________________________________________________________________________

    Thank you all for your support, sending all of your virtual hugs and kisses. Have a great night!

  • MoreShoes
    MoreShoes Member Posts: 179
    edited January 2016

    Where can I read more about the "no andioxidants during chemo" policy? I just read your messages and it scares me, cause I am eating tumeric and drinking green tea (one cup a day, I mean...let's not over do it!) I'd like to know if I have to stop with these things immediately.



  • Mamiya
    Mamiya Member Posts: 151
    edited January 2016

    Just to clarify: nobody ever stated a goal of "making it into a tumor" for me, that's just kind of what happened. I suppose there *could* have been a lump there that wasn't really defined or was hidden by the sheet or nest type of tissue but i don't know. I had a clear mammo 4 months beforehand.

    I don't take Kicks' comments as being too awfully confrontational or disrespectful - this is a flat medium with no emotion other than little smiley or frown faces. I choose to interpret her input as perhaps a little abrupt but I bet traveltext can take it.

    Bottom line is we are sharing information and helping and supporting - and the fact that we don't always agree is proof that we are all different and cancer with the same name might act differently in different people (oh how we know that when one does well and one doesn't with similar specs).

    Hugs, this ain't Facebook!

  • traveltext
    traveltext Member Posts: 1,055
    edited January 2016

    I'm fine, and certainly don't feel beaten up. All comments are valid, and without thick skins we'll never beat IBC!


  • Geeper
    Geeper Member Posts: 91
    edited January 2016

    Hi Hydranne- It went well. l feel good. The porta cath entry access was not painful at all. The nurse was good and I did not feel a thing. The benadryl sucks, I hate the groggy feeling. I knocked out for about half hour while on chemo and when I got home I knocked out. I slept a good 3 hours and woke up feeling energetic; maybe it's the "roid rush". I am eating cooked salmon on a bed of kale and drinking Perrier. I am not nauseous. I have motion sickness bracelets and they maybe doing the trick. I am drinking a lot of water, the nurse said to drink 2 liters of water, a little at a time. So, far so good, but let's see how it goes tomorrow. I hope all is well with you! Thank you for checking on me :)

    Hi Bon-Thank you for keeping me in your thoughts! I feel good. They said to look out for signs and to call the doctor if I have a fever of 100.4 or greater, shortness of breath, and/or constipated more than 2 days. Crossing my fingers that I do well tomorrow. I hope all is well with you.

    Notdoneyet- I am sorry about the bad news. You are in my thoughts! Keeping you in my prayers. 

  • meadow
    meadow Member Posts: 998
    edited January 2016

    Geeper, Thought of you today and said a prayer for you! So glad the first day went well. You are off to a great start!


  • Geeper
    Geeper Member Posts: 91
    edited January 2016

    Hi MoreShoes-

    Sorry, I missed this post! To address your question and/or concerns about "no anti oxidants during chemo" policy. There is no actual policy that I know of. I would suggest you talking to your nurse, doctor, or a dietician. I don’t want to give you incorrect information. I went by some of the threads on this site and viewed some of the foods to avoid while specifically on Taxol, but I don’t know the truth to this source (link listed below). Others sites will tell you that a certain food is good to fight of cancer, but another site will say the opposite so it's best to talk to the medical professionals. http://foodforbreastcancer.com/articles/breast-cancer-diet-during-taxol-(paclitaxel)-chemotherapy

    The 1st thing I did when I found out I had cancer is go on Pinterest start looking up cancer fighting foods. I bought most of the cancer fighting foods and did the shakes and juices. I added turmeric to everything.Everyone has different type of cancers, so this may only be addressing certain type of cancers and more for prevention. I still do the shakes and juice but take extra precautions and do it in moderation.

    I am not using "turmeric" for personal reasons as this lowers my blood pressure and my blood pressure is already too low. I bought Matcha green tea because a friend of mine recommended this tea to me. The benefits are good, based on what I've read but this brand I buy contains a lot of caffeine without the side effects of coffee. I am choosing not to drink caffeine drinks for personal choice and I don’t want to take chances. I love coffee and miss it; I like it muddy where the spoon stands on my coffee mug (lol). I had headaches when I stopped cold turkey but the headaches went away. I personally think that some anti oxidants are good, but the supplements are not and best to eat in moderation. I don’t know if they feed the cancer cells, but do know that MD Anderson serves their chemo patients small quantities of blueberries and raspberries. I know that they help with your immune system. Please check with the medical professionals before taking my word for it. I hope I addressed your questions. I am a newbie and learning as I go. Have a nice evening!

  • Geeper
    Geeper Member Posts: 91
    edited January 2016

    Hello Meadow- I am doing good for now, keeping positive and hoping that it goes well for me all this week. Thank you for thinking and for praying for me. I pray for all of us each day, I pray for healing and strength.

    Bon- I don’t know if I am doing well because it's the first day. But I am glad I am doing well today.

    I ditto what Bon said "May we all be blessed with better, good reports". Thinking of all of you and sending you virtual hugs.

  • Geeper
    Geeper Member Posts: 91
    edited January 2016

    Hi everyone-

    I feel good today, having no side affects at all. I am a little concerned because I did not have an inverted nipple prior to chemo and I have an inverted nipple today and my breast looks worse than it did. I don't know if this means that it's working, although I know it's too soon to tell. I am just going to keep my eye on it. I go in for lab work on Friday at my oncologist office and I hope it looks better by Friday. 

  • Geeper
    Geeper Member Posts: 91
    edited January 2016

    Hi Bonnie-

    Oh okay, I am not feeling so scared anymore. I've been sleeping with a sports bra and I didn't last night. I thought I would let them breath. I put on my sports bra a couple of hours and just checked my breast and it looks better. It so weird Bonnie, because based on what I read, IBC looks worst each day, but my left breast looked the worst on 12/12/15. It was swollen and bruised with peau d'orange and tumor felt the size of a golf size and hard. I had finished eating a box of ginger snaps with ginger chunks and my breast starting hurting bad so bad at night. It went through changes, but other days looked better than others. I guess it's different for others. Thank you again for always being there, for your support, and wealth of knowledge.

    Thank you for the comment on my picture. My daughter loves to do makeup, so she likes to practice on me. She said that she could not wait until my eyebrows fall off because does not like the way they grow in and can't wait until she can draw them in. She wears wigs most of the time and she is excited about picking them out. So we are trying to turn some negatives into positives. I'll post another one later on with either a wig or bald head. 

  • ibcmets
    ibcmets Member Posts: 312
    edited January 2016

    Geeper,

    Sorry you joined the IBC club. I was diagnosed ibc stage IV with bone mets from the start in 6/09. I was stable for 4 years on Femera, an AI but the others did not work so I went back on chemo which is doing well, just exhausting. Everyone has different stats. We are not the same. bc.org here has lots of threads for treatments you will go through and be able to get answers from people on surgery, radiation, AI's and such. I started with chemo as most do with ibc for 8 months. My onc waited a year b/4 doing Mast. I had bi-lateral with reconstruction started at same time. I would not recommend this as it was very painful the first week. I would wait to heal till doing recon.

    SSDI was very helpful for me from the start and I was able to keep my ins, now 2ndry to medicare after 2 years on disability.

    Much success with your treatment.

    Terri

  • kicks
    kicks Member Posts: 319
    edited January 2016

    Geeper - I just remembered (after reading your post about benadryl) how the IV benadryl 'hit' me. I had taken oral benadryl with neoadjuvant A/C without any issues (had taken it several times in the past for bad reactions to bee/wasp stings with no issues then either). With the IV benadryl with adjuvant Taxol, within seconds of it being injected I would go 'nighty- night' (as the nurses called it) and then about 20 mins before end of Taxol infusion would 'wake up' as abruptly (totallly alert with no lingering effects) as I had gone to sleep.

    I also had issues of keeping my temperature up. I always had run a bit low temp. wise, it got somewhat worse during neoadjuvant but not really bad - one of the warmed 'blankies' worked good. With Taxol, I had to 'fight' to keep temp up. The facility I went to had cubicles with reclinners and a curtain across the open side. They also had glasses in cubicles with hospital beds and individual heat/cool units. Because of the 'nighty-night', I had to have a bed anyway but also had to have a glassed in cubicle with the heat cranked up as high as it would go. Also had to have the warmed blankets replaced several times so I didn't drop into critical level. I usually was in the 95-96f range but did drop below 94 more than once.

    Just my thoughts/experiences.

  • Geeper
    Geeper Member Posts: 91
    edited January 2016

    Hi Bon-I am so glad to hear that you have met 20+ year survivors. My favorite minister is also Joel Osteen. He is going to be in San Diego this weekend and we were going to go but I am trying to stay away from big crowds at this moment and the drive is 1 ½ hours. I am going to get some tickets to see him next time he is at the Staple Center. I believe in prayer and the power of healing. I met with my radiologist oncologist yesterday and he is a wonderful Christian man. He told me about a severe stroke he had two years ago which left his right side completely numb. His prognosis was not good and told he would never fully recover and gain mobility on his right side. He said that one day he started to move his right toe a little at a time and then other parts of his body. He said that what occurred within the next hour was a miracle. He was able to regain full movement on his right side. He said he would pray for healing everyday and left it to God. He was visited by the doctors the next day, and they could not believe it. He said some doctors  do not like to say "Miracles", they called it "Outliers".  But he believes it was a miracle. He is close to retirement age and was going to retire, but he believes his calling was to go back to work to help others. He told me never ask "God Why" and that he has a plan for every single one of us.

    My daughter is a lot of fun. She is upbeat and has remained positive. Be on the lookout for pictures.

    BTW.. I am a new auntie to a beautiful healthy baby boy. My sister gave birth at 11:56 pm. pacific time. I am elated. Today is my 4th day of chemo and I have no side effects, with the exception of my menstrual cycle. I was suppose to start two days ago. I am going to take this as a good side effect because I have a heavy cycle and this would bring down my platelet counts. 

    Hi ibcmets- Having diagnosed with mets from the very beginning was upsetting, so I can imagine how you must have felt when finding out. I know I have a long road ahead of me and I am just gonna take it one day at a time. I am applying for SSDI as I was the main breadwinner, and I just got laid off in Dec. I appreciate all of your feedback. Terri- much success with your treatment as well.  

    Hi Kicks-Yes, I don’t like the IV benadryl. I fought it on Monday because I had my daughter and husband with me and I was trying to have a conversation with them but I realized I was not making sense. I hope I get use to it. My temperature runs low too. I had them turn up the heat and give me two warm blankets on top of the blanket I brought with me. I have a big room to myself with my own TV, restroom, a bench for my guest to lie down, two extra chairs, and the hospital food is great. They feed me and my guest. The staff is wonderful and that reclining chair is good. They have a reflexologist that comes in, but she was out sick on Monday. I will definitely take advantage of this next appt. Thank you for sharing your thoughts and experiences.


    Have a blessed day everyone! I am going to go visit my new beautiful nephew at the hospital in just a bit.  

  • MoreShoes
    MoreShoes Member Posts: 179
    edited January 2016

    Geeper, thank you for your reply about the antioxidants. I think I'll keep op eating/ drinking whatever I want, cause I'm doing it in moderation anyhow. Tuesday is the next chemo and I'll ask the nurses.

  • Geeper
    Geeper Member Posts: 91
    edited January 2016

    Hi MoreShoes-

    Yes, keep up with whatever it is your doing and ask the nurses.


  • Mamiya
    Mamiya Member Posts: 151
    edited January 2016

    MoreShoes, I may have already mentioned this but my MO said eat and drink whatever you want but did caution about drinking a lot of green tea. My doc is not keen on supplements as they may interfere with what he is trying to do. Let us know what your nurses advise! :)


  • Geeper
    Geeper Member Posts: 91
    edited January 2016

    Hi Bon, thank you for the congrats, he is so beautiful :).

    I am feeling well today. I had my 2nd chemo treatment today and all went well (Praise God). My menstrual cycle came Friday night and it was pretty heavy so I was pretty much in bed this whole weekend, trying to get some rest and ate so many beets and broccoli. I made me some ginger tea and that helped with the heavy bleeding. I have a lot of energy today. I slept during my chemo session (lol) because of the Benadryl (hate it). Both my hubby and children went with me and I felt so bad because I took these puzzles and planned on being interactive with them, but no luck. I knocked out 30 minutes into my session. 

    I can't believe both you and your husband met Joel Osteen. How exciting was that? I love Joyce Meyer too. I have her book "Starting Your Day Right" and this helps me each day. My daughter made me these origami stars with beautiful quotes for each day. Which reminds me that I need to get the jar back from her. I opened a star this Sat. and there was a quote from "The Fault in Our Stars", she quickly got the quotes from me and took the jar back and said she had to go through them and take out all the quotes from that book. She said she did not want me thinking about this movie and only wants me to have "happy thoughts". You see she made me this jar full of quotes 2 years ago, when I fractured my wrist (ulna and radius). This took a toll on me because I couldn’t do much, like wash myself properly or dress myself. These little quotes helped me back then and are helping me now. She needs to give me back my jar!

    I am glad to hear that both Joyce Meyer and Joel Osteen helped you spiritually! I love it:) I hope you get to see Joel again and get to see Joyce. I believe in miracles too!

  • Mamiya
    Mamiya Member Posts: 151
    edited January 2016

    SusieM49, welcome! The standard of care for IBC is chemo-surgery-rads. I had carboplatin and taxol followed by FEC (but it could have been AC, same thing essentially). Some people have AC followed by taxol. It depends on your hormone receptor status and your doctor.

    You can make your diagnosis and treatment public on your profile if you want others to be able to see what your diagnosis and treatment plans are, sometimes that helps the conversation.

  • meadow
    meadow Member Posts: 998
    edited January 2016

    Welcome Susie! Me too, Chemo, Surgery, Rads

  • Geeper
    Geeper Member Posts: 91
    edited January 2016

    Hi Susie- Welcome! Wishing you well as well. 

  • kicks
    kicks Member Posts: 319
    edited January 2016

    Hi SusieM - I had a different TX plan than most. Mine was neoadjuvant chemo, UMX, adjuvant chemo and then rads. Most IBCers do 2 different Chemo neoadjuvant first.

    Time frame for me was 17 days from DX to starting neoadjuvant Chemo. I saw my PA at 11 that Thurs (a week after lymph node had first enlarged) and at 1 that afternoon she had me in for a new mammo (last was about 6 weeks before) which turned into also an US and biopsies then. The next morning (Fri), the Radiologist called me at 8 with the path. report - as expected - IBC. Saw my Surgeon on Mon, Rads Dr on Wed and Chemo Dr on Thurs. The next week there was Bone Scan, CT and MRI (both with contrast), a PET Scan (which an area along lower jaw 'lit up' so was biopsied - 'nothing' there) and EKG. The next Wed port implant and the next day (Thur) started neoadjuvant DD A/C. 2 weeks after last A/C had UMX and 3 weeks after UMX started 12 weekly Taxol. A week after last Taxol started Rads starting Femara a week after starting Rads. It is a bit different than most do but it apparently worked for me as I'm still NED 6+ yrs post DX.

    While most have the same TX plan (chemo, chemo, surgery, rads), there are no absolutes as we are each unique and have different Dr.

  • traveltext
    traveltext Member Posts: 1,055
    edited January 2016

    Neos should read this article HERE and be aware that the chemo first option has been found to stimulate the evolution of further tumors in 23% of patients in this recent study.

  • Mamiya
    Mamiya Member Posts: 151
    edited January 2016

    But in IBC, surgery before chemo has been shown to have a fatality rate of somewhere around 100% so that is why we do neo adjuvant chemo for IBC.

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