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Thread: Squamous Cell LC with occult primary

  1. #131
    You're so quiet, is all okay?
    Oct 15 diagnosed NSCLC stage IV , Mets in lymph nodes,
    Chemo 6 months, Tumour didn't grow but lymph nodes
    New Chemo 4 months, not working, new spot 4mm in Liver
    Aug 16, start Opdivo ,immune therapy
    CT Nov 16 , Tumor shrank, Lymph nodes shrank
    CT Jan 17, Tumor all the same, Lymph nodes on Neck and under arm back to normal, in Lung and Chest a bit smaller
    July 17, 2x3 cm Brain Tumor found, removed in Surgery, now radiation on spot,still on Nivu
    August 18, all still same, living life every day
    January 2019 < CT said NED!!!!
    Fingers crossed

  2. #132
    Experienced User
    Join Date
    Mar 2016
    Quote Originally Posted by Pet1968 View Post
    You're so quiet, is all okay?
    Yes, thanks for asking, all is fine. I am in treatment now and staying close to Moffitt. I starting a CaringBridge blog and most of my cancer-posting energy is going into that right now.

    I did have a pancreatitis flare after my first CarboTaxol, but it was not bad. Hopefully, I will be able to tolerate the rest of the chemo infusions.

  3. #133
    Moderator Top User IndyLou's Avatar
    Join Date
    Jan 2014
    If you care to share a link, Melisande, I'd be interested to read your blog posts.

    All the best as you continue your treatments.

  4. #134
    Experienced User
    Join Date
    Mar 2016
    Thanks for asking, but I’m keeping the blog/website only for people I know in real life. Probably shouldn’t have mentioned it. Sorry.

    But I’m sure I’ll be back on here soon enough.

    Actually, I’m trying to figure out if the various ills I have been feeling over the last two days are side effects of CarboTaxol or whether they are related to a possible mild pancreatitis flare.

    I had my first CarboTaxol infusion early Wednesday evening. Except for what was clearly a short-lived pancreatitis flare, I felt fine until Friday when I lost my appetite. This morning I was feeling even worse, so I took the prescribed Zofran. I did feel almost completely fine for a couple of hours in the evening, but aside from that, I’ve been feeling blah, with intestinal discomfort and lack of appetite most of the day.

    Do these sound like normal side effects of C/T?

  5. #135
    Moderator Top User IndyLou's Avatar
    Join Date
    Jan 2014
    Every patient is different, Melisanda; you should probably discuss what you're feeling with your doctors.

  6. #136
    I was on different chemo but you are feeling similar to what I felt. My stomach did not feel good. In a three week cycle, day 4-7 were the worst for me. Try to stay ahead of your side effects by taking the meds before you need them.

    At the time - 46 yo male, non-smoker
    Sept 2012 - DX - One tumor NSCLC Squamous Cell Right Upper Lung
    Oct 2012 - TX - Treatment similar to Pancoast Tumor - Pre-operation radiation and chemo (5.5 weeks of IGRT and 3 cycles of Cisplatin and Etoposide)
    Dec 2012 - Surgery - Remove RUL, Surgical Pathology Report Adenocarcinoma T2N0M0
    Now - Wait, watch, & pray

  7. #137
    Experienced User
    Join Date
    Mar 2016
    Any tips on dealing with skin irritation, burns from radiation?

    My radiation oncologist recommended Aquaphor & hydrocortisone cream. Others I have spoken with are following a lot more complex regimens. Example: a green tea treatment (for the tannins); a lavender hydrosol treatment; calendula cream; and then the Aquaphor.

    Any other ideas?

    Iím also starting to experience a little dry mouth, although my radiation oncologist said I shouldnít be getting this. I donít think it is the Zofran since I havenít had any in over two days.

  8. #138
    Moderator Top User IndyLou's Avatar
    Join Date
    Jan 2014
    My radiation oncologist's office provided some adhesive cool gel pads, which are also available in Walgreen's and CVS stores, and you can certainly experiment with the other regimens to see what works best for you. Anything with Vitamin E, aloe, things that will cool and moisten your skin will be helpful.

    As for the dry mouth, you might try swishing warm salt water around in your mouth, 2-3 x daily. The Biotene rinses can also work really well. From what I recall, your radiation is being administered lower on your thoracic area, and I agree that shouldn't be the source of your mouth dryness. It's possible that any chemo you're taking could cause that side effect.
    Age 54 Male
    early Feb, 2013 - Noticed almond-sized lump in shaving area, right side of neck. No other "classic" cancer symptoms
    late Feb, 2013 - Visited PCP for check-up, PCP advised as lymphoma. Did blood work, orders for CT-scan, referred to ENT
    3/7/13 - CT-scan inconclusive, endoscopy negative
    3/9/13 - FNA of neck mass
    3/14/13 - Received dx of squamous-cell carcinoma, unknown primary
    3/25/13 - CT-PET scan reveals no other active tumors
    3/26/13 - work/up for IMRT
    4/1/13 - W1, D1 of weekly cetuximab
    4/8/13 - W1, D1 of IMRT
    5/20/13 - complete 8 week regimen of weekly cetuximab
    5/24/13 - Complete 35-day regimen of daily IMRT
    mid-July 2013 - CT-PET scan reveals no active tumors, but shows necrotic tissue at site of original tumor
    early Sept 2013 - partial neck dissection to remove necrotic tissue. Assay shows no cancer present.
    Spring 2014 - No signs of cancer
    Spring 2015 - NED
    Spring 2016 - NED
    Spring 2017 - NED
    Spring 2018 - NED
    Spring 2019 - NED


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