Calling all TNs

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.

This was just before my boost. thank goodness the boost directed at the tumor in breast.

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.

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.

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.

Totally freaking out. I finished all my chemo a month ago and the tumor was no longer palpable. Went today to have the radioactive seed placed. They did an ultrasound first to see if they could see the tumor. The technologist could see a "wisp" that was so small they placed the seed using the mammogram and the titanium chip. The technologist said she has only once seen "nothing" show up but she has had lots of pcrs with a "wisp". What are your experiences? I know there isn't anything I can do and I've done all I can. And something obviously has to fill in the space where the tumor was but ... still freaking out.

Gmanmom, I had a wisp on my mammogram, and a pCR. The wisp was fluid of some sort I recall?

Gmanmom, rads are to mop up anything left so to speak. It's normal to want a blank slate, but fluid and so many other unknowns are possible, like scar tissue etc.

It's normal to be worried, its the nature of this disease.

Update on me: I"ve had off and on hip/groin pain since finishing rads. Had ultrasound for a blood clot it was so severe. Pain management has helped, but the last few weeks it's been intense. Diagnosis? Severe arthritis. No growths etc, fractures. Accelerated by rads per my orthopedic dr. . I'm having the xray guided steroid injection in a couple of weeks. It's hurts when i first get up, and now if I go without any meds or anti inflammatory, then it's excruciating to get up.

I've seen where switching from acetaminophen to ibuprofen based meds helps some folks. May try after my injection. I'm considered a good candidate as my injections for bone on bone knees works at least 4 months.

Even if shot works just a few weeks, will be worth it for me. Funny I knew it was not metastasis as I had this complaint before diagnosis just not as severe. I had a broken knee cap due to an accident a few years before dx, and it's all related. Just not as intense.

At this point, exercise does not work, too much pain, supplements have helped, as do the creams and sprays. Specifically the Theraworx relief spray.

It took a while to show up after rads, but came slowly but surely with a vengeance. Sometimes the cure ..... I'll leave it open ended.

I'm sorry that you're hurting so badly, Valstim52. Even with a major error requiring a second surgery and causing kidney failure, I would definitely go through hip replacement surgery again because the pain relief was so dramatic. Steroid injections helped delay surgery some years. I hope your injection kicks the pain to the curb.

Lyn

I have been away, vacationing from real life this past week; just reading through posts.

It’s so encouraging to see the check-ins from those who have been 3, 5, even 7 years out. Yay! Thank you for the optimism!

For those who are just joining us, welcome! I’m happy you found your way here, there’s a huge amount of support to be found. Make sure to join a group of people who are starting treatment at the same time; this difficult experience is better with comrades.

To everyone wrapping up treatment, CONGRATULATIONS! Wooohooo!!

I just started my first day of 6 x 3-week cycles of Capecitabine (Xeloda) which is oral chemo. I’m not excited to be back in active treatment; it’s been an amazing February and March. August will mark the end of this and I can’t wait!

One day at a time friends! XO

Good Luck to those getting to do Xeloda. It shows how the focus is on finding other options for TN. Just 4 years ago, Xeloda was only for those with stage 4. Now it's part of ongoing treatment.

Those in treatment know we are holding your hand. Reach out as much as you want. Others were there for us, and continue to be. We are all strengthened by your courage. REmember a lot of folks just lurk but your words and experiences help them as well.

Thanks for all the support with my arthritis. It's such a shame but we were all so happy I had horrible arthritis and not a recurrence. Such is a life with cancer in your history. If my steroids procedure to my hip does not work, on to therapy, which includes the pool. I'm on a ton of supplements already focused on inflammation. They say that's why I can walk at all. All that hiking and roller skating... I guess ... wore out my knees.. and hip. Plus an injury ..

Any supplement suggestions? i'll check my list and see if i already take them.

Val

Valstim, I keep meaning to try tart cherry juice. You would need to make sure it doesn't conflict with your current medics and I would start slow to avoid digestive problems. Here's one article about it:

https://www.livestrong.com/article/506277-the-side...

Lyn

Valstim52....HEY VAL...sorry to read about your problems. Sometimes it seems as though it never ends. You mentioned that you stopped taking D3. I read that this is THE most important supplement for BC survivors (and all women, generally). I take 5K daily. Don’t know if it’s a coincidence or not, but I have no aches or pains. I did a few years ago, but not now since i’ve been regularly taking D3. Give it a try and see if you start to feel less pain. Be well!

I am considering, (just considering mind you)  if my DX comes back the same after MRI results (stage 0 DCIS, high grade triple neg),  being 60 with under control diabetes, undergoing BMX with NO reconstruction. I do not have the bad genes.   I'm no fool, and I know there would be vastly more complications associated with recon over going flat.  I'm ok with flat, seriously.  Here are my reasons if I were to decide upon this.  Do these reasons sound valid?  I know it sounds like over treatment, and I'm the only one who can decide, but I also know my surgeon is going to push for lumpectomy with rads.   She has not referred me to an oncologist yet - only a radio-oncologist, and they haven't called yet.  I see her again on the 9th.  I guess I'm more worried about rads with diabetes really.  

1.  Triple negative, high grade.  Much more chance of recurrence, and I really don't want rads. 

2.  Being diabetic with it under control right now, and I've already lost 20 lbs, seems like this would be the right time to nip in the bud. 

3. dense breasts mean something might not get caught in time later.  I'll be older, and perhaps frailer for undergoing a massive surgery. 

4. I want my husband to be able to retire at 68 (he'll be 68 in Dec 2020).  I know him, and if there is a good possibility that this could come back, he'll put it off even longer.  

I know, anything could happen.  So, am I being crazy here to even consider such a thing?  

I was tested and was negative.  Given that I have a sister and a daughter, that was a real relief to me.  I think with TNBC, my doctor does it almost as a matter of course as it can be a factor in treatment - especially surgery.  In my case, being negative, a lumpectomy is a more viable option than if I were positive in which case I would seriously consider / probably have a double mastectomy.