Calling all TNs
Comments
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Ally. I was faced with your radiation dilemma. 2 docs for and 1 against so I went ahead and had it. At the time I didn't think I could forgive myself if it came back and I had said no. I'm better educated about it now and wouldn't make the same choice. My reasons are: They can only radiate once. If you have a recurrence or another cancer in the future, that treatment is no longer an option. The side effects don't always display themselves until years later. Some of the complications are very serious, I'm not sure with a clean pcr they are worth the risk. I believe radiation was directly responsible for my development of lymphedema. I had cording issues within 3 months of treatment and first symptoms of LE developed after that was resolved. I'm currently worried about some nodes on my radiated breast, either the radiation didn't work and it was all for nothing. or this is just one more complication of rads.
It's so hard all of this making decisions when you can't see into the future. Ultimately you need to be able to live with yourself and your own choices. Just look up some of the long term side effects and make sure you have all the information you need before you decide either way.
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Ally, I did not have an option for rads, with my IBC it is part of the triple treatment (chemo, surgery, rads) that is changing statistics for the better.
For you, I see your delimma. Hmmm....asking this...If you chose not to do rads, and you did have a reoccurrance, would you feel overwhelmingly that you did not do all you could treatment-wise this first go around? Or would you be at peace with your choice? I am wishing you to not have to go thru rads. I did not find them to be particularly hard. I did burn of course, some areas severely, and there was fatigue, all in all it was not as hard as chemo for me. But my reconstruction took a hit with tissue shrinkage and encapsulation. and you are young with a young body and I so wish for you to finish all this and be happy with your body. But not at the risk of good health and long life, not at all no comparison which one is more important, so I am not helping your with your decision one bit....sorry!
5 to 7 percent benefit to me is quite a bit, I want every percentage in my favor I can get, but IBC has such low survival stats that maybe I am biased.
Perhaps others will post soon with their input. Thinking of you with all good positive thoughts and prayers.
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I'm so sorry to read about some ladies experiencing SE's up to years after treatments are concluded. That really makes me nervous and doesn't seem fair. The Regional Cancer Center I treat at provides patients (not obligated) with a Naturopath. Before I started chemo the Naturopath recommended supplements (approved for cancer patients) that helped minimize some SE. The biggest one was the neuropathy. I will undergo a protocol in early October that will specifically prevent long term SE's, detox the body of the chemo drugs and help prevent a re-occurrence. This part of the everything I've gone through (and my up coming exchange in November) is something I'm really looking forward to. Its bad enough getting diagnosed with cancer, I don't want to spend countless years living with the effects of it.
Good luck to all.
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Hi ladies,
I wanted to pop in here to ask if any of you had ever heard or had Radiofrequency Ablation on any tumors during any part of your treatment? Also, I shared on here a while back my journey and how I have gotten where I am today. Dx August 2013 and still doing ok. Had tumor on left breast no lymph nodes but two months later had PET scan because first onc and surgeon didn't do anything about the nodules he saw on the CT scan. Have TNBC on my lung showing on 5 nodules and lymph nodes. Been on a trial since 11/25/13 and been doing ok. Abraxane weekly in addition to Avastin every other week until 4/28/14 which I finished the Abraxane. I am continuing the Avastin every two weeks along with a targeted therapy pill called Erlotinib/Terceva that I take daily. The last 3 CT's have shown no progression and so I am feeling very blessed. I have a strong faith and I believe I am healed and know that God is in control here and with me every step of my journey.
I have decided not to do the genetic testing as I really don't see the need. Perhaps I am wrong but my daughter doesn't want to know at this point. I had an aunt who had ovarian cancer and there is no breast cancer as I am the first who has had it. I just had my annual and they checked ovaries, uterus and tubes and all looks fine...Thank God! They do recommend I consider removing the tubes and ovaries which I will do next year sometime. The problem is with this pill the concern is bleeding so the MO doesn't want to do anything at this time. She feels its all good there is nothing broken so lets not fix it right now. I am fine with that at this time but I do want them out when the time is right.
Just wanted to reach out and see if anyone has been on any study trials or if you have heard of the one I am on? Also regarding the ablation options.
Thank you...Lucy
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Lucy - by you being testing and if it comes back +, it much less expensive for your daughter...difference could be thousands
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Ally, your post sounds like I could have written it! Although I finished treatment over a year ago! My body is riddle with odd aches and pains and I too have been denied the bone scan! My MO doesn't think it is necessary, so I don't think he is pushing it with the insurance!
I did not have a mastectomy and that in itself can affect nerves and muscles, but I did have lumpectomy then chemo and rads and I'm told the rads can really mess up things and that is where my problem is. But that doesn't take the panic away! November of this year I will be two years from DX! And I don't know how I can say for certain that I'm NED when I've had NO scans at all!
As for rads, I was NOT given a choice! I mean I guess I could have said no, but it was not posed to me as a question, it was just given as part of the treatment, and I even asked if I did the masectomy would rads still be recommended and they said a definite YES! Therefore, I opted to not have the mastectomy and just proceed! I was told my chances of recurrence was 1% different between lumpectomy and mastectomy and I didn't won't further surgery for that little change and also knowing rads was to be done either way! BTW, this was 3 opinions! All the same!
Ally, just be sure to ask about side effects from Rads, because if what I'm dealing with is not recurrence of mets, then it's definitely problems caused by RADS!
I'm just scared because it seems that being a year out, things would start settling down!
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Just wanted to ask if any of the ladies have been given Aloxi or Emend for nausea? I received both today in my IV- chemo #4 treatment just concluded. I've been having awful nausea during my last three txs. Have any of you had theses nausea drugs and if yes, did they work?0 -
Red, I had Emend before and I think during and after each infusion. I was never terribly nauseated, just felt like a truck kept running over me. I sure hope the new drugs work for you, and I'm sorry you didn't get them earlier. My best to you, Jan
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Thanks so much ladies for your opinions and also for the reassurance about the pain. I really appreciate it. I saw a rad onc at the University of Michigan today who's clinical interest is TNBC rads. She just concluded a retrospective study with a doctor in Germany who is apparently one of the doctors leading the charge for neoadjuvant chemo for TNBC. She said they just presented the data to a committee last week and will be publishing the report soon. I can't remember how many people were part of the data, but they looked at all BC and then broke out TNBC treated with neoadjuvant chemo. Those who had a complete response had a recurrence rate of 6%, which was much better than they anticipated. So bottom line, prior to this study, she would have advised against rads, but supported me in my decision to do it. However, after collecting and analyzing this data she would in no way advise rads for me because of the complete response. She said with a risk of recurrence around 6% the benefit would be negligible. She also added that the data didn't look specifically at positive or negative nodes, so being node negative gives me an even greater advantage. She told me to finish up my surgeries, heal from chemo and go live my life. I'm now leaning towards not doing it, but still have yet to make a final decision. I'm giving myself until the 1st!
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Red, I was given Emend before each infusion as well, but I was also prescribed an Emend patch that I put behind my ear the day before treatment and removed the day after. My stomach felt "yucky", but never did I feel I was going to throw up. I also had Taxotere and Cytoxan.
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Red - I had both of those drugs and I never had any nausea. I really hope they work for you and prevent the nausea going forward.
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Red I also had EMEND and it was wonderful. I don't think I could have managed without that wonder drug. I took it for three days, the day of infusion and then the following two days. I was also given Ondansetron but I'm not sure whether you have it in your country or it may be under a different name. The only trouble with Ondansetron was the terrible constipation but for me that was such a small problem compared to throwing up.
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ally, very very interesting information regarding rads, tn, neoadjuvant. Thanks for sharing. If you have links to articles or research regarding this info your doctor shared it may be very helpful for others starting out
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My pre chemo meds via IV were..emend, zofran (both for nausea), benadryl and steroids.
I was never sick.
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Hi Red! I had both Aloxi and Emend in my chemo cocktail....and the nausea was very minimal after infusion. Easily handled with a zofran maybe once a day x 2 days. Hope it works for you.
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Thanks for the input Ladies.
Today I don't feel too bad. I am taking my steroid Dexamethasone for the remainder of the week (even though I normally only take them the day before chemo and the day after) and Zofran twice a day for the rest of the week and Compazine for breakthough nausea if it occurs. The Pharmacy didn't give me an additional script for Emend for the week. I will make sure to go back to the hospital for IV if I start to feel nauseated -I just found out yesterday that I could have done that all along
. One thing I have noticed is the chemopause just got worse. I use to only lightly perspire when I had hot flashes. Now Im actually sweating and others can see it. I sure hope this goes away in the next few months. Yesterday was my last chemo tx and I plan on doing a detox in a few weeks. Just ready to get on with life.0 -
Red - huge congrats on your final chemo treatment yesterday!! As you're toughing out the effects of this last round just keep telling yourself last one, last one! And glad to hear you have the appropriate meds this time to combat that nausea. Hang in there.
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Had checkup with Surgeon today, latest Mammo all good, physical exam all good, released for one year!! Yay, but nervous! But I will still see my MO on November 4 and will see what schedule he puts me on!!
I do have one question and this may not be the correct thread, but just wondering if any ladies that had lumpectomy, chemo and rads had a recurrence or mets that appeared that was no where around the breast? In other words, can having clean mammos and exam overlook possible mets? Just curious!
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my vote is for no rads ally... I prefer to have that weapon in my pocket to use later in life if it's needed...we have a lot more years to get through!
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Nettie: Mets, if they occur, can show up anywhere in the body, typically for TN is soft tissue like liver, lungs, brain. So no, a clinical exam and mammo do not show that. While it's a very scary prospect -- and all of us go through that fear for the first year or two following treatment -- most early stage TNs do not recur, nor get mets. My advice is to be sensibly vigilant; if you experience unusual, unexplained symptoms for more than 2 weeks, then check it out with your onc.
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red, make sure with all the anti nausea meds you are taking, to take something to combat constipation. That can be a real pain in the ass, literally. Don't forget to take it daily along with high fiber, prunes etc. it can be a serious problem, really! Don't forget this!! Ya on your last chemo! Happy dance for you. Tell us about the detox when you can
And to Joan lunden, TN sister, you go girl. On magazine cover without her wig, looking beautiful
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Thanks for the advise Lisaj5140 -
Luah, thanks for the response! This is why I don't really understand why there isn't more monitoring or scans for us! The only long term issue I've had is back pain! And all the doctors are saying its issues that the treatment has caused mixed in with my scoliosis and none of them will help me get insurance approval for a scan! My pain is NOT constant, it is NOT worse at night, it is NOT worse upon exercise, but it is worse with certain movements and it is worse if I sit for long periods! And the "spot" that I feel it the most, I can always "feel" that spot, even when it is not hurting! Just keeps me worried, but when asked if the pain is constant, it is NOT, and there are some days that it doesn't hurt at all unless I try to shrug by shoulders together in the back!Anyway, I was just curious as to why we aren't monitored more closely!
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Nettie1964,I hear you on the worry. I have had rib pain on one side for about 6 weeks. I told my MO about it a few weeks ago and he did order a CT scan. But he was also checking nodes that were in my lungs. The scan came back clear. Thank goodness. But the pain has not gone away. He thinks it will subside in time, as a lot of women tell him of random aches and pains after chemo. It still is worrisome to me. I hope yours goes away.
Ally,
I was not given a choice about rads. Three doctors told me I should have them, although in the end, it is the patient's choice. I started mine today. We each need to choose what we feel is best. Whatever you decide, just feel like you made a good decision, and then let it go.
Red,
I had aloxi and emend in my IV with each infusion of A/C. It helped a lot, but I still needed to take Zofran for a few days after each treatment.
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Hi Ladies,Today is Thursday and I feel a little queasy but better than I have after my other chemo txs. I am very fatigued which makes it hard to walk. But, I'm managing. My txs have always been on Tuesdays and by Fridays I am totally out of it. I am hoping tomorrow is a breeze since I am taking three anti nausea drugs. My biggest concern is my fluid intake. I got so dehydrated after tx #3 because I was just to sick to drink anything. This lead to sores inside and outside my mouth. And the chemopause just really ramped up. I am sweating like crazy taking multi showers. We will see how I feel tomorrow.
Have a good evening all!!
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Dx September 4 stage 2a no lymph node involvement. Found lump in February. Radiologist said ultrasound did not look like cancer, check back in six months. Some passion so I went back and got dx. Start chemo in two weeks then lumpectomy. Still need ct and bone scan next week. It's scary but it looks like some real survivors out there. Everyone says I will beat it, which I will, it's just the fight that worries me.
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red....looking better so far!
Okkim, it's a different journey for everyone, but we share a common thread. We find out how strong we are and we go through hell. The thing is, it's very beatable. It's not fun getting there though!
Stay here and hang with us. Use this place to vent your big fears and worst frustrations. Everyone goes up and down, but there is always someone here to lift you back up!
You will do this and you will be fine...it's all the little stuff in the middle that is the challenge!
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Red, congratulations on your last chemo. That's a big milestone.
okkim, I'm sorry to hear about your recent diagnosis, but I'm glad you found us. I also hope you join the chemo thread for the month you start chemo. Both threads can be a huge help as you move forward.
Speaking of breastcancer.org chemo threads. I'm getting to meet 8 of the other ladies from my Sept. 2013 chemo thread out in Las Vegas in two weeks! After we finished our chemo, about 30 of us from the thread started up a private FB group (anyone from the Sept. 2013 group is welcome to join the FB group). We decided to try to have annual meetups. Our first meetup is coming up. We all have short hair, but are excited about showing it off. I think it's going to be so much fun. Our FB group has become very active and turned into a survivorship support group.
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Simple, How wonderful that you will get to meet your virtual friends!! I think that is absolutely awesome!!Wednesday was my last rad! Yay!! I'm so happy that my official treatment is now OVER!! It feels weird to not be driving myself to the hospital every morning.
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MomMom,
Congrats!!
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