Calling all TNs
Comments
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Santabarbarian, I am on 13 of 30 rads. I am not inflamed but am getting a serious burn on side of my breast where lymph nodes were removed. I apply calendula cream and neosporian to the burn. I can't wait to be done. You should be done or almost.
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2 more, including today. Will be so happy to let myself heal, FINALLY! A 9 month marathon, but the finish line is tomorrow!
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Yay, santabarbarian! Congrats on finishing active treatment. Hope you've got something wonderful planned to celebrate. Even if it's just a favorite meal.
Best wishes for continued healing.
Trish
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Santabarbarian,
Congrats on finishing treatment tomorrow. I have seen you on many boards, and you've gone through this with an amazing amount of knowledge and proactive grace. Wishing you peace and healing.
Vickki
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Thank you so much, I am thrilled to be finishing at last!
The Proton center had their weekly "graduation" yesterday for everyone finishing this week... They catered a nice lunch and all the graduates, family members and the other patients randomly there for their appointments participated. They give every graduate a commemorative coin with a unique number on it, corresponding to the number patient they are, to have received Proton Rads at the center since it opened (it's 7 years old, and I was 3968).
One young man of about 20 actually finished his last session right as we were graduating, and it was sooo sweet, they played the "Rocky" theme song as he walked out of the treatment area into the lobby, where the party was, toting his IV pole... everyone gave him a standing ovation as he rang the bell and walked up to get his coin. Not a dry eye in the place!
There is such a huge difference between a medical environment and a *healing* environment... I am sure everyone on this board can recognize the difference. When people go the extra mile and connect on a deeper level and care about you as a full person, not just a body part or a diagnosis, they care about your spirit and morale. ProCure is a healing place with extremely kind, connective people. From the front desk to the top doctor, they were lovely, lovely people.
My techs, in particular, were stellar. Very efficient, quick, kind, warm, funny... I had the same ~8 people (3 per time)-- black, white, asian, young/old, male/female, native born/foreign born... After 28 times you know one another, you have inside jokes... I will miss them. What was beautiful was watching everyone working together seamlessly in the 'machinery ballet' of setting up and re-setting up for each zap, all with grace, kindness and good cheer. What a great example of how things can/ should be everywhere.
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Hello all,
I haven't been on in quite some time. Thought maybe the group might need a shot of testosterone? Proud to announce that my wife is coming up quickly on 6 years since Dx on April 8th and she's doing GREAT. Newbies there IS hope and you WILL be fine! Wishing you all a great day!
Mike
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Congrats santabarbarian! That center sounds very supportive, and made me wish my insurance would cover something like that.
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notdefined, there are a few observational proton trials happening, so you may want to check whether or not you can get one of those, if Protons interest you. I know my center worked w my insurance and gave me a break... some do...!
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Thanks! I will look into it!
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Just diagnosed with triple neg, stage 0 DCIS - so far - from a biopsy. Terrified, but hopeful. My MRI was yesterday, and I did get DNA blood tests done. 3 weeks the results of that should be in and I'll have an appointment with the Dr to decide on treatment. Last year they found a small round particle that they were not worried about, but required 6 month mammogram follow up. In September, everything was the same. Thank God that they wanted to do one more 6 month follow up before it went back to one year. So this time they found that the original speck had not changed, but found this DCIS that had not been there 6 months ago. That is what is scary. It's obviously pretty aggressive if it wasn't there 6 months ago and now it is.
The pathology report mentions "high grade" which is also scary. I'm adopted is why they are doing the DNA testing.
I've read some of the thread here, not all, and plan to use these 3 weeks to exercise, start taking vitamin D and eating even better than I have been over the last year. I'm currently Type II diabetic, and last year decided I didn't want to be on expensive meds (Januvia) anymore. So I started a ketogenic eating plan. This has allowed me to shed 20 lbs, and has stabilized my blood sugars. I went from an A1C of 11 to 7, to 5.9. I am 60 years young.
I guess I'm most terrified of the chemo effects, being there is no telling what I've put my body through already being diabetic. I go to the internist regularly, and I've never had bad blood tests for kidney or liver function. My chest xray came back clear.
These posts have helped, because yes, I stupidly googled TNBC and the first thing I saw was "aggressive" and that I'd die in 5 years!!
Mary, aka Stitch
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Not sure why my post was deleted by the community? I'd accidently posted in UK forum, and so before I deleted it there, I copied to post it here. I guess that's not allowed. Oh well. I'll try one more time.
Just diagnosed with triple neg, stage 0 DCIS - so far - from a biopsy. Terrified, but hopeful. My MRI was yesterday, and I did get DNA blood tests done. 3 weeks the results of that should be in and I'll have an appointment with the Dr to decide on treatment. Last year they found a small round particle that they were not worried about, but required 6 month mammogram follow up. In September, everything was the same. Thank God that they wanted to do one more 6 month follow up before it went back to one year. So this time they found that the original speck had not changed, but found this DCIS that had not been there 6 months ago. That is what is scary. It's obviously pretty aggressive if it wasn't there 6 months ago and now it is.
The pathology report mentions "high grade" which is also scary. I'm adopted is why they are doing the DNA testing.
I've read some of the thread here, not all, and plan to use these 3 weeks to exercise, start taking vitamin D and eating even better than I have been over the last year. I'm currently Type II diabetic, and last year decided I didn't want to be on expensive meds (Januvia) anymore. So I started a ketogenic eating plan. This has allowed me to shed 20 lbs, and has stabilized my blood sugars. I went from an A1C of 11 to 7, to 5.9. I am 60 years young.
I guess I'm most terrified of the chemo effects, being there is no telling what I've put my body through already being diabetic. I go to the internist regularly, and I've never had bad blood tests for kidney or liver function. My chest xray came back clear.
These posts have helped, because yes, I stupidly googled TNBC and the first thing I saw was "aggressive" and that I'd die in 5 years!!
Mary, aka Stitch
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Mary,
Sorry you are here-- but it's good that you found your people!
And bravo for getting so informed so fast, and for already being attentive to your eating. One of the MOs I talked to was very in favor of a keto diet for TNBC. (Not all MOs are the same on this.) I have done a largely whole foods, vegetarian/pescatarian version of keto with low animal fat, as low animal fat tends to correlate with low recurrence too.
The good news about TNBC is you CAN actually defeat it. It can recur quickly or it can just die from the treatment. It is worth doing absolutely everything you can do to improve your chance of killing it off right now. Aggressive = a shark that never stops swimming, so it can't outsmart chemo and hide from it as easily. The pokey slow cancers are the ones that hide and lurk for decades.
Chemo was no fun but not beyond my abilities to handle. I was terrified of chemo and it was actually ok.
You are in good shape, you have caught this early and you stand an excellent chance of getting rid of this for good!!
wishing you all the best,
SB
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ALHusband, that's great! Thanks for the update!
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Hi Mary,
My aunt has TNC and diabetes as well. She just finished her chemo, and is going for surgery tomorrow. I just wanted you to know that chemo is doable, and perception of it is a lot worse then going through it. Glad it was caught early, and wanted to send hugs your way. The beginning and waiting for results is really hard. Once you get your plan, you will hopefully feel less scared.
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Thanks notdefined and santabarbarian. You ladies make me feel more positive!
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Mike, thanks for the update. Cheers to your wife on 6 years past diagnosis!
Santabarbarian- congratulations on finishing treatment! Sounds like you had a great experience radiation. I also bonded with my staff and one person in particular. I just sent her a card to celebrate being 1 year out from rads and to thank her again for being so helpful. One thing that I personally take away from this whole experience is to really thank the people who made my journey better. Conversely, I also became much more vocal in dealing with those who didn’t:)
Welcome to the thread, Mary. Sounds like you have a good handle on things. Don’t hesitate to post if you have any questions or you’re just having a bad day.
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HEY MIKE....What a surprise to see you here. I check in once in a while and love to see posts from my “old crowd". Wonderful news on your wife's good health. I'm almost 3 1/2 years past diagnosis and feeling great. Wish you and your wife only the best....continued good health and lots of good times. NEWBIES...never give up. There is another side to this BC coin
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volleyballmom, the Rad. Oncologist should be writing u a prescription for silvadine cream, and they have a burn foam/pad u can place over ur rads burn to heap heal. The foam/pad(Mepilex) is sticky enuff to stay put but doesnt stick to the skin irritating it further. Just remember u still meed to allow air to the skin to heal when possible.
Hope that helps...
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YAY, Santabarbarian! It sounds like you had exceptional radiology care and what a huge relief to be done with treatment.
Mike, it's wonderful to hear that your wife is doing well.
CathyToo, I'm so pleased to hear that you're feeling great. Super!
Mary / Stitch, I'm sorry that you find yourself here, but know that this forum will prove helpful for information and emotional support from people who have walked the walk themselves. Please keep us posted as your treatment plan develops.
Lyn
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Thank you urdrago71. I will ask him in the morning. I felt like I breezed through 16 weeks of chemo and healed quickly from surgery. Thought rads would be long but a breeze compared.to chemo. Boy was I wrong. I find it worse, unless by body is just tired and beaten up. I am exhausted all the time, the neuropathy I was so glad I never got came a month after chemo and my arm and neck are killing me from the position I lay to do rads. Sorry so frustrated I needed to vent. 3 more weeks.
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Volleyballmom, can u call the office & leave message is there anyone that checks calls after hours?
I agree, my thoughts was the same rads. Bcuz I made it to almost the end and bam all of a sudden I had blisters on the opposite side of my collar bone. I was burning at my collarbone (no fat) and I was ready to come out of my own skin. Ugh. They cld of pre loaded me with products to help ease the pain/discomfort. Plus everyone was off due to Christmas, I cldnt imagine if I wldnt of had a break at xmas what my skin wld of looked like.
Hope u get some comfort soon. If they dont help u tomorrow. i will send u my refill of silvadine cream and extra foam.
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Thank you urdrago71. I was having such a bad morning. I see them in the morning for treatment andy doctor is always around, he is pretty hands on. I just thought over weekend having a 2 day break I would feel better but it did not. I put more cream on and didn't weary bra whenever I did not have to today.
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This was just before my boost. thank goodness the boost directed at the tumor in breast.
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hello ladies! My mom started AC on March 11 and she has not experienced hair loss yet. Her SEs were minimal.. fatigue, headache.. should i contact the doctor or be worried her chemo isn't working? She has round 2 today
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Wow. Urdrago71 that is raw. Is it healed yet. Mine is not quite that bad yet just in one small spot but I don't want to get to that. Of course I was so late today because of traffic I couldn't wait around for doctor. They said I can see him tomorrow.
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After 28 rads, I am as red as that, all over my breast and my chest. I am peeling and it's a little raw like that all over as the peels fall off. I am not terribly uncomfortable, luckily, but it is fairly awful-looking!
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Hi USFknights. For what it's worth, I didn't lose my hair until between the second and third treatment and the side effects were less in the beginning so I don't think what your mom is experiencing is unusual. However, I don't believe there is a strong correlation between SEs and chemo effectiveness.
My chemo is pre-surgery and the biggest effect was that I could see / feel my tumor was shrinking, even after one treatment. If I'd done surgery first, I'm not sure how we would have judged chemo's effectiveness, tho.
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I remember you, ALHusband. I just passed my 7-year anniversary from diagnosis and I'm doing fine. I haven't been on this site for quite some time but, now that I'm retired, I'm checking in every few days to see what's new and if I recognize anyone from the old days. I'm so glad your wife is doing well.
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I remember you, ALHusband. I just passed my 7-year anniversary from diagnosis and I'm doing fine. I haven't been on this site for quite some time but, now that I'm retired, I'm checking in every few days to see what's new and if I recognize anyone from the old days.
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Seven years...great news, mb1024!
Lyn
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