pancreatic MBC

[Healthplus1]

I have tried this before with no success but am trying again. Is there anyone out there that has experienced mbc to the pancreas? I have bone mets as well but it’s the pancreas doing me in. I am in so much pain and I am working with a palliative care team but the medication just makes me sleep all day. Just feel very alone in this boat. I have read that only 2%of the mbc goes to the pancreas. Any 2% out there?

[AvidBooklover]

I have not heard of anyone with this. BUT have you reached out to Sloan Kettering in NY? I have two friends being treated there for pancreatic cancer...neither started in the breast, but if anyone is on top of this, I would trust them.

[Healthplus1 in reply to AvidBooklover]

Yes and they were in agreement with the treatment plan. I think it is just a rare matastisis. But please keep your ears open.

[RedAzalea]

Hi there, 1st of all, I am sorry. MBC is enough for anyone. I have a pancreatic cyst that they monitor every 6 months. It was discovered incidentally. I am told they don't think it's connected, but I would ask have they biopsied it? to confirm that it's BC cells in the Pancreatic tumor?

[RedAzalea in reply to RedAzalea]

and I am treated at MSK and and can recommend the Pancreatic surgeon I see

[Healthplus1 in reply to RedAzalea]

Yes thank you I will certainly take the referral information. I went to MSK for a second opinion when first diagnosed with the pancreatic lesions, to see if they were in agreement with the plan of radiation and simultaneous chemo and they were. That was 6 months ago.

[Healthplus1 in reply to RedAzalea]

Yes I had a biopsy and it is breast cancer. 2 stents placed in my abdomen and I had a nerve block. I get weekly taxol infusions but all palliative care does is give me oxycodone and gabapentin dir the never ending pain that makes me sleep. I’m not depressed but certainly disappointed there is not a better solution.

[monkeygirl62 in reply to Healthplus1]

I am so sorry that you are going through this and that you feel alone in this journey. I understand the pain though. I have stage 4 mbc and limited stage small cell lung cancer in my right lung. I too feel alone in my journey, I have neuropathy in my left arm and hand and the pain is 24/7 (a level 5 out of 10 at it's best) and I have a palliative care team . I take long and short acting morphine with gabapentin. I also take an antidepressant. I have mbc in my lungs, liver, right adrenal gland and left ovary. Though I can't totally relate to pancreas mets I can relate to the loneliness and being different with two primary cancers. You can dm me anytime you want and we can chat. And feeling somewhat depressed is normal. Hugs and prayers 🙏 🙏 🤗 🤗 Alicia

[Best521 in reply to monkeygirl62]

Your bravery is inspiring. A dear friend of many years also had two cancers at the same time , the second one being non small cell lung cancer. Her bravery and encouragement inspired me to keep going despite all the challenges. Thank you for reminding me how resilient and hopeful people can be. It’s not all Ibrance and flowers.

[monkeygirl62 in reply to Best521]

True it's not all roses and a cup of tea! I don't feel brave, I just put one foot in front of the other. That's how I get to the bathroom. Lol 😂 😂. Hugs 🤗🤗 and prayers 🙏🙏, Alicia

[Healthplus1 in reply to monkeygirl62]

Thank you so much for your words of support.

[Suite1000]

Mine is not cancer, but I have a huge mass on my pancreas. Was discovered at my de novo diagnosis 2 years ago. At first the doctors were pretty freaked out, but it has remained stable.

Not the same as you though, hope you get some good advice.

[Healthplus1 in reply to Suite1000]

Thank you so much for your response. Are you in any pain?

[Suite1000 in reply to Healthplus1]

no pain. I don't even know it's there. Oncologist and radiologist have stopped commenting. I did go to see a pancreatic dr and he seemed unconcerned as well.

[Healthplus1]

something to be thankful for!

[Sher20]

Hi, Sorry for delayed response to your post. The pain situation sounds extremely difficult along with having this horrible disease. Have you tried going to Gastroenterologist that has good knowledge of pancreatic disease- they might have ideas on how to help your pancreas out ( ? Maybe pancreatic enzymes, low fat diet, etc? ) Gastroenterologist would have more knowledge of possible solutions for pancreatic pain than Oncologist or palliative care. I hope your pain improves quickly and pray for taxol to be working!

[Healthplus1 in reply to Sher20]

Yes to all. I have seen a gastroenterologist, an interventional radiologist who did a nerve bock and now looking for a permanent block. I have taken the pancreatic enzymes and antacids, which did not help. Palliative Care docs only prescribe more pain meds which are temporary and make me sleep. It is absolutely horrible. My oncologist never had anyone with this nor did her team. Hence my outreach.