IBC lounge: roll call, support and just a good place to hang out
Comments
-
Good stuff mini. How many treatments to go? Val, how's your stroke recovery coming on? HNY to all.
0 -
My treatment plan is to stay on Kadcyla indefinitely so long as I am responding to it and tolerating the side effects like no cardiotoxicity or impaired liver function. Skin mets are very difficult to get rid of fully so it's about controlling the spread of disease and quality of life.
Kadcyla is in the UK news as NICE has not approved it for routine use from June 2017 for new patients as they say it's too expensive. Breast cancer care have a petition going to get Roche, the manufacturer of Kadcyla, to drop the price.
Please support as for some patients it's one of the last treatment options available.
Thank you
Mini
0 -
-
HNY all. I am still here. Doing pretty well. I am going to be on Herceptin/Perjeta for as long as my heart can take it. We will scan me in approximately 6 weeks to make sure still NED from neck down. My MO also says she will scan my brain to make sure there are no other lesions. Hope everyone else is doing well too.
0 -
mini and mara, good to hear from you both! Mini, the Emerald Coast sounds like good medicine to me!
Mara, I am glad to hear things are stable. Thank you for sharing!
Happy New Year back at you TT and all!
0 -
Hello friends, how are you meadow, its been so long since i wrote on here,i am very much NED and my oncologist told me my IBC is cleared, i hope the same to all of you.
jess
0 -
Oh dear friend, I was just thinking of you within the past hour! I am of course thrilled to hear you are well, and NED. That starts my 2017 off right! I too am still NED, thank God. I had to get a new Oncologist as mine was tragically killed in a car wreck last summer. I was devastated by his passing, he was so wonderful. I have only met my new Oncologist once, she is very nice, and really thorough. She will be fine. Again, so very good to hear from you Jessozzie, glad you are doing well. We go back to the beginning together, yes? Sending you a hug, and my love.
0 -
HNY to all. So glad to hear from everyone. Stroke recovery is going well, slow but well. Hubby was hospitalized last week with an allergic reaction to a medication. He was in intensive care for 5 days. Very scary. He is very healthy and this was the only medication he takes. It's known in extreme cases to cause extreme edema. Lisinipril its an ace inhibitor for high blood pressure.
What a way to start the new year.
0 -
Val, so sorry about the hubby. Yes, very scary. Was this a new medication to him? Had he just started taking it? I too take this drug for my high blood pressure.
0 -
HNY to all I am also NED free. Pet scan clear and the TCC bladder tumor was very low grade. Remove and watch.These can be more trouble then they are worth. See him in six month. Very happy.Mara hang in there!you to mini. Count our blessing
0 -
Happy New Year to all. Mini, I'm glad the treatment is working, hope you go to Ireland. Mara, it's good that they're thorough. Val, that's so scary, but now he's better, right?
During fysio we found out there's a painful spot close to the armpit. So Friday I've an appt with a different oncologist to check what it is. I just can't stand not getting a break.
0 -
Hi All,
Happy New Year to you all!
I'm doing well, 2 years after starting treaent. NED and hoping to stay so for a long time. And on a positive note: my breastcancer experience made it possible to change jobs (I had the opportunity to get a free education) and I'm loving my new job as a web developper.
Wishing you all the best for 2017.
Noor
0 -
MoreShoes, I am truly sorry you are having to worry about cancer again. I can see how many times you've recurred. I have my fingers crossed it is caused by a benign reason. Keep us posted.
0 -
So sorry Moreshoes that you have to face this. Here is hoping for b9. Thanks for all the great wishes. Yes he is better. Meadow he was on the medicine 2 months. But had the dry cough which was an indicator that something was wrong.
0 -
Moreshoes, I too am sorry that you have to face this again.
Noor : Thank goodness you are NED. I am grateful to see another person on these boards who is in France.
0 -
Thank you for the good wishes. Athe least they take things seriously and they've done an echo. They still don't know what it is, maybe necrosis, but it's not cancer. In 6 weeks I can go again if i want, just for my peace of mind.
How nice to have more Europeans in the group, I'm in the Netherlands.
0 -
Oh Moreshoes I can't imagine how frustrating it is , not knowing. But at least it's not cancer. Sending hugs
0 -
Hello all,
It's been quiet in the lounge lately. Doing well here. 7th Kadcyla treatment done and dusted. Heart holding up as echo cardiogram was fine.
The challenges at the moment are the dressings as the underarm is a very difficult area to cover with any sort of comfort. I have nurses calling 3 times weekly to help out. I have to get it sorted before my trip to Ireland Valentine's week. Travel insurance is a challenge too as I don't fit the normal tick boxes as my recurrence is in the skin, but I will get there.
Hope you all are doing ok. January almost over... I see lots of life returning to the garden. Looking forward to seeing the snowdrops and daffodils soon.
Mini x
0 -
Yes mini, quiet here lately, but quiet can be a good sign. Really glad that your Kadcyla treatment is done and I hope you can keep your Valentines trip on schedule. I'm fine now, NED for my two cancers and getting on with things. Best wishes to all.
0 -
Hi Mini and all, I too am on Kadcyla and finding to be pretty tolerable. I had a PET scan earlier this month that showed no signs of active disease ! which was music to my ears after nearly two years of ups and downs with Taxol, HP and progression. Feeling pretty good and hoping to keep the run going for a good long time. Glad to hear you are twice NED travel text - that is great! and PS, happy Australia day - oi oi! Keep on keeping on, everyone!
0 -
Hello all,
I have been lurking for awhile on this site, have found it useful, now I feel I need to share.
I had found my right breast had been slightly larger than the left for several months. I had been told my breasts were very dense and in past had one biopsy, that was negative and had remained in that status for five years. During my last mammogram in August of 2016, the tech noticed a noticeable difference in the size and firmness of the right breast, did another scan, which involved squeezing the breast, and alerting the radiologist. Within two days my primary doctor was alerted to order an MRI. My primary ordered one to be done ASAP, but the technician stated since I was on hormone therapy I was unable to have my the procedure done until hormones were completely out of my system as well as my herbal supplements.
Within a week and a half I had red swollen, bruised, painful and more swelling in the right breast. I my primary put me on 1 week of antibiotics with no result, then another; needless to say it got worse, the doctor did an override and asked for the MRI to be done immediately. Unfortunately the MRI was done on a Friday, and by Monday radiologists had not yet read the results until late Wednesday evening! Will not fill you in on the errors in-between (will save for another thread). I had to wait until the following Monday to see the surgeon. Biopsy and consult revealed localized inflammatory breast cancer with lymph node involvement. Saw oncologist 3 days later, port inserted (collapsed lung after insertion) and chemo started immediately.
My advise to others do not ignore even subtle physical differences. Do not accept mammogram as only way to diagnose breast cancer. I feel the squeezing of the breast accelerated my condition along with techs that postponed my MRI entirely unnecessary!
I have since finished chemo, treatment of Herceptin until November of this year,I have a PET scan scheduled before I see my surgeon to schedule surgery, and am meeting with radiologist for radiation for 7 weeks. Also started anastrozole a few days ago.
I have worked this whole time, I am a nurse, and my hours are full time; so I try to keep my life as normal as possible. My co-workers are quite supportive, not only are they co-workers but they are true friends. You truly find out who your friends really are when a situation arises.
Nice to have a forum as this to share similar experiences, and find new information.
0 -
Bravenurse13, welcome and thanks for sharing your experience. Very sorry that you too find yourself here though. Your initial symptoms sound a bit like mine. I had the swelling of one breast but none of the famous orange peel skin or redness - just skin thickening. I was living overseas at the time and so I was using Dr. Google to try figure out what could be going on. Much of what I read said "compare your breasts to each other" and if one is larger or otherwise different then see your doctor but they went on to say that changes such as swelling could be pre-menopausal. I was 48 and pre-menapausal and had had a mastectomy and reconstruction 15 years earlier on the opposite side so my two breasts never looked the same. I also kept reading how rare IBC is so I thought, 'naw, I probably don't have that.' But when my nipple inverted, I immediately hopped on the 13-hour flight home to see my doctor. Once it was clear what we were dealing with, I still had to push to make things happen asap! Well, two years on, I'm doing pretty well. Feeling pretty good and keep fairly active. Life has changed significantly - I know longer can do the career that I loved as a humanitarian aid worker abroad but I am finding joy and fulfillment just the same. The first several months/year are very difficult so it is great that you have such good friends and co-workers but now you have us too!
0 -
Bravenurse13 and MargaritaMI welcome. You will find this thread supportive. I had the sudden redness and swelling. My BS felt it was from the tumors pressing on the lymph system, therefore not inflammatory. My Mo says inflammatory. Either way they threw the kitchen sink at me.
0 -
Hi to all, you made me lol Valstrim52 with your comments. I didn't have the redness or orange peel,just enlargement inverted nipple. I also could suddenly feel two large tumor.and the itching all that summer before.
0 -
Waving at ya jcpriest046...
Hello to all.
0 -
Bravenurse, and MargaritaMI, I am glad I read your stories. Thank you so much for sharing with us. It is amaze how few doctors seem to get the ball rolling in time on Inflammatory Breast Cancer. I got mine diagnosed rather but from that moment until I finally got the chemo port in and the chemicals pouring in - was at least a month of very anxious waiting ... They threw pretty much the kitchen sink at me as you wrote, thank goodness for that. Unfortunately, it has now returned after two and a half years, and I am really glad to have the opportunity to talk to you gals.
0 -
Welcome to the Lounge Bravenurse, and welcome back MargaritaMI. The same stories about late and lax diagnoses continue. Then, of course, the treatment is the kitchen sink, which is heavy going. Amarantha, how is your treatment coming along?
0 -
HI Traveltext ! Treatment is going okay, all the usual side-effects from Afinitor, my energy has returned thank goodness ! however I have no assurance it is working. I have tried to raise the alarm in phone calls to the oncologist and oncology nurses but only get the usual 'il faut laisser le temps au temps" - allow time for time ... My next apt on 7 february. I just really want to see the redness diminish in the ex-breast and the cardboard-like tissue to soften.
0 -
Time for time, that's hard advice to listen to when you are worried. There's a good discussion on how long Afinitor takes to work HERE. You asked elsewhere: Does sleep cure cancer? Well, it certainly helps the drug to do its job.
0 -
Welcome bravenurse13,
The IBC lounge is really a great resource. Here we all realise the seriousness of the diagnosis and can share so much to help each other along. I am amazed that you have been able to work bravenurse. When I was diagnosed in February 2016 I was so symptomatic and unwell with very painful, swollen right breast I had to stop working as a community pharmacist for the foreseeable future. I miss the regular customers and my interactions with them. My work colleagues are also my friends and they have been so kind to me over the last year.
Mini x
0
