IBC lounge: roll call, support and just a good place to hang out
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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.
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Hello friends ,
It’s me again and I just started chemotherapy yesterday with AC and I am taking medicines for nausea which hit me badly and little diarrhea which went away. I am having constant back pain and pain in my joints specially in the knees and leg pain. Is it a common side effect of chemo. I had a bone scan few days ago which was clear.
Thank you
Flora
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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.
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Flo80, The latest advice for patients undergoing chemo is to exercise after treatment. This may sound counterintuitive, but it is a proven method of getting through treatment. Of course, everyone reacts differently to chemo, but you need to understand it's importance in your treatment plan and work out a way of handling it. Good luck.
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thank you Lori will try. Not yet they just started with chrmo
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Thank you Travelnext will tr
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another question sorry . My breast had turn more red with pigmentations is it common
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Flo80, Eveyone is a bit different with IBC. Don't sorry for now, just prepare for treatment.
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Thank you and just hanging on
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Flo80 hang in there - you will start to feel better soon. The first few days of each AC were a bit rough for me too. I didn't have bone pain, but I was taking Claritin to prevent bone pain from Neulasta.
I tried getting in small walks once I was able - it did help.
My breast also got worse - more red - when I started treatment.It helps to remind yourself that you will start to feel better
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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
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Dear LoriCa, dear all, we are just back from MDT meeting - my wife will get mastectomy, scheduled asap (i.e. "why to wait", according to the surgeon). Hope for the best, hope to throw the beast (just a bit left on MRI) into the trash bin. Wish us luck. Lots of love and hugs to everyone,
Saulius
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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
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Saulius that's great news, I'm glad that chemo worked well enough for surgery because I remember when you were concerned that maybe it had stopped working. Is she NED everywhere else now? I hope that surgery goes well, hugs for both of you!
Lori
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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
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My condolences to TT and everyone who knew Julie. She was gone before I arrived and I never had a chance to get to know her. I read through some of the earlier posts to learn about her. It looks like she didn't last very long after her Stage IV dx (or even her initial dx), and there was no sign that things were going seriously wrong until the very end. How heartbreaking for her family and friends! May we all remember to never take life for granted.
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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.
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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.
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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
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It is nice to read some messages of hope in here. I'm on Gezmar now, and Decadron (solupred) - it feels like things are getting out of control, but the Decadron does have some effect. Trying to keep chin up. it is good to hear any and all messages of improvement on or usefulness of any drug at all.
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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.
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hi warriors. Just have a question that how much percent is the chance of metastasis after a year of treatment
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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.
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Thank you so much Travelnext. I am a member of the IbC on Facebook and it breaks my heart with so many people getting to stage four after the treatment and after few years 😔
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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.
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Flo80 and Blue22, both my sister and I are doing well many years after treatment, as is TT. Don't focus on statistics, or any doom-and-gloom stuff you read on the internet. Treatment has improved even since I was diagnosed in 2011. Yes, we lose people to this crapalactic disease, but we also have many survivors.
Right now, take one day at a time. Go to bed, wake up, tackle just what that day brings. One day at a time.
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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
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I know blue22 and I think things are improving. The stats on the internet are old but I see some get the reoccurrence just as soon a share they finish their treatment. We go through so much in this one year of treatment and this breaks my heart. I just pray that everyone get some better and beat this cance
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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
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Hello friends,
I dont post much now as i am given the all clear for my IBC , i was wondering if anyone has heard from
Kicks or Meadow,
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