IBC lounge: roll call, support and just a good place to hang out

Dear Leslie, thank you for sharing this lovely story with a gritty heart, you are right we must hold on to the the love that is shared in the way it is shared.

I'm feeling somewhat better tonight, but very weak. How strange this all is.

I've experienced brutal bone and joint pain on certain treatments, especially in my legs. Try Claritan, it's recommended by many here and I found that it did give me some relief. Bone mets don't usually occur below the femur. Are you on anything else besides the chemo, like hormonals or targeted therapy? Anything that affects yours estrogen levels will also cause bone and joint pain.

thank you Lori will try. Not yet they just started with chrmo

another question sorry . My breast had turn more red with pigmentations is it common

Thank you and just hanging on

Thank you so much Blue22. I also have like pain in my neck and mouth at times. Ah just can’t wait to be done with this

hi Blue 22 I find my orange peel is increased a bit and also have pain in my tumour part and also my left affected underarm. Have these weird brown white skin spots come on my neck. Also got a small pimple on back of my earlobe. Wonder if they are side effect of chemo. Will call the oncologist toda

I’m thinking about PurpleMinion (Julie) today since it’s the three-year anniversary of her passing. Many here were posting back then and Page 10 of this thread has the details.

I have this notion that we’re not really gone while ever we’re remembered, so RIP Julie.

“it is with a very heavy heart that I must tell you that Julie passed away earlier this morning. She had gone to the ER again on Friday with extreme shortness of breath and rapid heart rate and was admitted to the hospital. She went from a normal room, to the Acute Care unit and eventually to the ICU, all along with more and more labored breathing and a weaker pulse. The ICU team did their best, as did Julie, but it was eventually too much for her.”

https://community.breastcancer.org/forum/81/topics/842683?page=10

Thanks Lori. Julie lived for just 11 months post diagnosis. After five months she developed contralateral mets, three months later bone mets in her spine, and a month later lung mets. A month before she died, she posted this heartbreaking comment:

"I haven't been on here a lot, so much going on, somewhat down about everything (scans seem to show that gem/carbo isn't really working) and just haven't had the energy to even talk about it. I start spine radiation Tuesday and we will discuss breast radiation to begin possibly after that. Just a little sad and scared, nothing works, disease spreading."

As she said, nothing worked. Fuck cancer.

I did not know Julie but sometimes I feel I know everyone on these forums after reading their thoughts, although probably we will never see each other. No one deserves to be forgotten. It is so beautiful that you all remember people who went away.

Lori, we were worried because C did not resolve under the chemo completely (June 14th MRI), and there were some small patches of redness that started to reappear near aureola, so MDT decided not to follow the standard and give a go to surgery. Actually they advised it to us when we consulted but then officially in papers they said "because the patient wants and asks for it". Well, this is how medical system is working, crazy. At least it is good we now have a chance for such things because 2-3 years ago stage IV and such surgery was not possible here, like "what for if it has spread already". Yes, she is NED everywhere else as far as we know. Last visceral organ MRI was on 6th of June - all "clear". Without this surgery would not be possible. Let's now pray everything works well. God, I am so sorry for my angel, but at least there's some hope...

Saulius

Oh Amarantha, i'm saddened to hear you are feeling at your lowest. We all wish we were closer to be with you during these times. Know you have our enduring support. Sometimes these drugs take a moment to go into effects that are noticeable.

TT i miss Julie. I was newly diagnosed and she reached out to me via private message. She helped me off the cliff that I was dangling from. I think of her often. I miss her. I miss Meadow and Bon as well. Those that are older to this thread will remember these ladies. I learned so much about this awful thing called IBC.

Flo80, it’s almost impossible to answer your question because it would depend on the effectiveness of your treatment. You’ve only just started chemo and likely have surgery and radiation to follow. If I were to guess, I’d say you have a low percentage, but you’ve read above that PurpleMinion passed eleven moths after diagnosis, and I know people who’ve been around 20 years without the disease metastasizing. It’s best not to fixate on statistics.

Hi Flo80. I totally understand where you are coming from. I also have a hard time every time I come across a story of someone who didn't make it. I go through a whole range of emotions, tears, as well as anger.

My doctors have never talked statistics, and told me from the beginning not to focus on them, but it is also hard to ignore.

Thank you so much blue22 and sbelizabeth. I wish you all many years of health and happiness. Thank you and this helps me stay positive

Dear All, my wife had a surgery (mastectomy) and heals well. Although I visit her every day, I still miss her so much. We'll see what happens next but we hope for the best. Dear Lori and others, how are you? Sincerely, Saulius