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  • bright55
    bright55 Member Posts: 146
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    hi everyone and

    Marie Elizabeth..55 is day of birth..I am now 64 or as old as rock n roll !

    I dont post very often..sometimes by here and on lung mets .

    I have visited your beautiful BC capital in the early 90's camped in the yukon and small plane journied to the high arctic so love the outdoors.

    I am still on monotherapy for lung mets....Last three months have had moderate anxiety waiting to see if the change from letrozole to tamoxifen would stablise the lung tumours which had again started increase after three years. This week good news woo hoo tumours have reduced and ct and bone scan showed no progression.

    Celebrating with A sister and two friends all outddoor fanatics and me will meet up in the the wilds of western australia for camping starting early june in Broome, swim with whale sharks and magnificant scenery like the Bungle Bungles finish in Darwin

    No leg pain as no letrozole .....so should enjoy the ups ands downs of camping.

    All the best with treatment everyone

    Bright in hope

  • marianelizabeth
    marianelizabeth Member Posts: 1,156
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    Bright, I like "as old as rock n roll. I am so old that I babysat for beatniks' kids who lived next door to us in Vancouver. Glad for no progression and no leg pain! Do you live in Australia?

    Liz, how is retirement going? I hope it is sunny days and being able to relax from admin and correcting papers and figuring out lesson plans. I am waiting to hear from Di too. Jo, I am going to your blog next.

    I know my last post had the bone scan stable but I have had right ankle bone pain non stop for a couple of weeks though it could we'll be physio induced too. My June abdominal/chest CT is to have right knee added and I just called MO office to ask for ankle addition too. Might as well have it added while I am there. Despite that pain and worsening hand pain I am in good mental health and better than in ages. My 3 sessions of counselling at Inspire Health was helpful in making some big decisions and I can go back anytime I feel the need.

    I have done the planning and bookings for trip to Atlantic Canada in September, one week in Newfoundland and 12 days in Nova Scotia. I decided to bite the bullet and because the flights are on Aeroplan, it only costs $100 each to cancel.

    Marian

  • Pots
    Pots Member Posts: 189
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    Marian, glad to see you’re feeling chipper enough to contemplate travel. NS and Nfld are gorgeous in the fall light. I’m thinking of going to PEI and doing a wine tour in Annapolis Valley in NS in September. I’m sorry to hear you are having a lot of leg/ankle pain, it seems like it’s always something. It is encouraging to hear that you received some excellent counselling at Inspire Health, I think I may need to talk to someone in the fall so i’ll Check them out here in Vancouver.

    Bright, I’m Jealous of your trip to Western Australia. Would you post some pictures so we can live vicariously?

    I’m in a holding pattern for now. The MO didn’t order a CT scan for my 3month visit today so all we had was the CA15-3 results, my numbers are going up but we don’t know if that is normal or something is brewing I’ve only had 2 blood tests checking the tumour marker. She agreed to order a CT scan and another set of bloodwork for 4-6 weeks from now....sigh it feel likes she’s trying a cost saving measure on me. I’m feeling a bit off like something is not quite right in my chest/abdomen. Stress maybe???

    Liz, Pat...how is life?

    Be well,


  • marianelizabeth
    marianelizabeth Member Posts: 1,156
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    Ann, what are the increasing CA 15-3 results? Mine crept up to 41.5 but yesterday, down to 33. something. Standing orders in June do not include tumour markers and I think standing orders last month or so were in error as tumour markers were supposed to be only once a cycle.


  • Pots
    Pots Member Posts: 189
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    My Feb reading was 115 and this one is 157. Some MO use it as an indicator, some don’t use it at all. My MO in Ottawa thought it wasn’t useful info so I hadn’t had it done until I moved here. I have a CT scan booked for June 11.

    Lucky you Marian, your numbers are almost normal!!!

  • marianelizabeth
    marianelizabeth Member Posts: 1,156
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    Seems that as an indicator, it is done with a san of some sort which you are doing. I also have a CT and MRI in June. Recent bone scan shoed the usual degeneration and also more uptake in a messy area from a very bad motorcycle accident in 1971~~tibia/fibula. But this bone scan compared to the last showed more than usual in knee and ankle so MO is adding knee and ankle to the usual chest/abdomen CT. I have been having a lot of right ankle bone pain but that might be from recent physio. Not worried but happy interest is taken.

    Marian

  • sadiesservant
    sadiesservant Member Posts: 1,875
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    Hi All,

    Sorry to have been MIA on the thread for so long. Life is, as always, a bit hectic. I’ve been busy dealing with our most recent renovations to the house. I’m redoing the family room to create a more relaxing space with a comfortable couch (to be purchased) and a great big high end television. The intention is to have a spot that I can crash and be a couch potato if I feel like it. Plaster has been repaired and painting is underway. Next I need to pick carpet and buy that couch.

    Still slogging away at work. I’m still working on the “accommodations” that I requested - no extended hours and adequate breaks - with varying degrees of success. It has helped but it’s devilishly difficult to maintain on a regular basis. While my boss says all the right things she quickly forgets when the next priority rolls around. I had a good chat with my MO at our last appointment in preparation for an ask for reduced hours. But I’m in a holding pattern on that for the moment as I’m waiting for new rules on extended health and long term disability to kick in for management.

    I’m sorry to hear about the TM’s Ann. I’ve only had mine tested a few times as they don’t seem particularly useful. Mine were only slightly out of range. I believe 45 was the highest I have recorded. My MO indicated that patients would typically be in the 100’s with my burden of disease. Marion, it sounds like yours behave in a similar way.

    Waiting for the results of a recent CT. I had it on May 15th but my MO is away until the end of next week. I’m not overly concerned but am hoping it will explain some ongoing right chest issues.

    Sending everyone big hugs. Di, Liz, hope you will check in when you can.

    Pat.

  • jackboo09
    jackboo09 Member Posts: 780
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    Hi everyone,

    I am currently in Wales visiting my little niece who has just turned one. My brother and his wife had a party for her with lots of her baby friends. My parents, sister and husband and I travelled down from Yorkshire.

    It has been great to get away and have a change of scene. On the drive, I got a call saying that my pension has been authorised for payment. I am relieved that I now have closure after a few last minute wrangles.

    So how is retirement? Well I have done the right thing for sure. I enjoy being able to just be. Not rush, have a walk, make plans during the week, not weekend... Still in transition though. I need time to think about this new phase.

    This cycle of HP has been delayed by one week to fit in with this trip. When I go again on 31 May I will have to mention hip pain. I have osteoarthritis in my knees and pretty much all my joints ache. I blame the enforcement of menopause and being on Letrozole for 2 years. The aching is pretty bad. I’m going to Spain in July and beginning to wonder how I’ll cope. Also how will I know whether this hip pain is more osteoarthritis or mets?

    I send my love to you all. A little troubled by this pain. I’m 48 in my body and 21 in my head!

    Sending love to all

    Liz ximage


  • DiV
    DiV Member Posts: 148
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    Hi ladies! Well I had my ct scan and lung tumor shrunk some and ches wall/scapula tumor is stable so that's some good news. I don't know if I mentioned that the scapula pain got to be too much so the Dr put me on fentanyl patch which helps greatly. Been a really hectic week. Had treatment Thursday and of course had the fatigue as soon as I start to feel a little better my furbabies Riley got sick with diarrhea. As her sickness turned into going on 3 days I took her to er last night at 11:30 and didn't get home til 2am this morning. I had a few hours of sleep and got up to see if she had used the potty pad and her stool was pure blood so back to er at 7am this morning. They kept her and put her on iv. I called at 2 and she still hadn't ate or went potty. I'm to call at 6pm this evening to see if they keep her or I go pick her up. I don't have kids but my dogs are my kids I love them big time. Wishing all well for good test results. Hoping everyone enjoys their travels. I'm so jealous!

    Diane

  • jackboo09
    jackboo09 Member Posts: 780
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    Hi to all,

    Been a while since I posted. I have walked off the hip pain. Just another nagging pain to spike my anxiety. Looking forward to my Spanish holiday in 30 days time. UK weather is currently dreadful. Rain, rain and more rain...

    Did Riley get better Di, I would love a dog now that I’m retired but the eldest son is asthmatic.

    Sending best wishes to all. Chime in ladies when you get chance.

    L x

  • marianelizabeth
    marianelizabeth Member Posts: 1,156
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    Wow, it has been almost a month since anyone has posted. I finally had my MRI July 4th as it was rescheduled twice. Once because it was to be on a weekend and no staff for port access. I have been trying to get my weekly pre-chemo bloodwork done with jabs but my veins are now so bad that the techs really have trouble and feel bad poking me more than a couple of times. The July 4th one went well with a good nurse doing the access and so on.

    My biggest issues for over a month and worsening, is the pain. Di, I know you understand this pain though yours and mine are a bit different. I asked about Fentanyl patches last year and was told by my pain doctor I love, that for my type of neuropathic pain, it would not work. She increased my Metadol by 25% over a couple of weeks and that helped. I am now having to add more breakthrough 8 mg Hydromorphone and with that comes constipation though chemo causes diarrhea soon after each infusion (still Paclitaxel) and I am managing somewhat.

    I saw the anesthetist/pain doctor who does my nerve blocks on Friday but because the last two have not really done anything we will be discussing some other possibilities. Meanwhile on Friday he did "peripheral injections of right thoracic dorsal rami~~C7 T1/T2 with depomedrol 80 mg, lidocaine 2% and celestine 6 mg". Wildplaces you would probably understand this! No result as yet other than some pain at the injection sites. My MO will be calling apparently, once she has the MRI report. Dr. Swartzdol, nerve block doc did have access on Friday to the Thursday MRI pictures alongside the ones to compare from last November and March of this year. He says of course that he is not a radiologist but to his eyes it appears that there may be progression. I have been in a good mental space over the past few months so I am not terribly worried. This is not to say that I look forward to the possibility of a change in treatment but we will see!

    Meanwhile I look forward to hearing from you my friends.

    Love and hugs,

    Marian


  • janky
    janky Member Posts: 478
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    Hi Marian and everyone - yes it has been quiet! I am hoping all is well with your results when you discuss with your MO! I had ct and bone scans done July 3 and am stable, Ibrance and Letrozole with quarterly xgeva are doing their thing so far! It has been 20 months since they found the stage 4...

    Sunny Alberta has been anything but! I am hoping it warms up as that provides healing to me when I can sit out and enjoy the yard. I wish everyone health and great results as we continue on our journeys :)

  • Jojobird
    Jojobird Member Posts: 95
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    It's been forever since I posted. I've not had a chance to catch up on other posts, but I hope you are all doing well.

    It's been a terrible spring. In March I started to feel some pain in my shoulder. After numerous incorrect diagnoses from general practitioners (to whom I was sent by my oncologist because my symptoms didn't sound "cancerous"), and incredible, debilitating pain, it turns out I had a 12 cm tumor, along with 150mm abscess that needed to be drained. The biopsy results? Triple negative, malignant, inoperable.

    Also: mets to my upper right arm bone. I'm officially stage iv.

    It's been very difficult to process this.

    I've been through radiation now and am to start immunotherapy next week. The efficacy rate of this therapy is, at best, 25%, and my oncologist has said that generally this is a 2-3 year prognosis. She's very kind, and offers hope for other therapies and trials, and I'm trying to remain hopeful but realistic.

    I just want to see my daughter graduate from high school.

    I'm applying for disability, have "retired" from work, and am focusing on appointments, my family,friends, and just nesting. I probably won't be writing much anymore as my right arm mobility is low due to mets, pain, tumor placements, and surgeries.

    This is so sad and difficult. My husband and I are grieving, and our daughter is hanging in.

    I'll be reading and catching up and try to post when I can. Love out to you all.

    Jojo

  • janky
    janky Member Posts: 478
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    Jojo- I am saddened by your news, though nothing I can say will ease your mind, I wish you well and truly hope they can slow down your cancer! Stay in touch as you can, and maybe find some comfort in these threads (forums) hugs. Janice

    Edited as I got both your name and my name incorrectly spelled (must have been way past bed time - I usually remember my own name!

  • Pots
    Pots Member Posts: 189
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    Oh jojo, my heart goes out to you. Getting the news that you have Mets is tough. Tough to take, tough to process and tough to live with....sigh, but we manage. Nesting is a good thing while you process this news. I hope you can get some pain relief and that the immune therapy works/ gives you some breathing room.

    I'm not sure why your MO is giving you a time frame...did she say for the immune therapy to work your or your prognosis...in her opinion. Because seriously does the MO have a crystal ball? Neither of my MO have ever offered a date, they don’t know...all depends on how you respond to treatment, your tumour load, No one knows.

    So how do we live? well for me it means I make plans in 3 month chunks from CT scan to CT scan. Right now I am dealing with another progression, biopsy and new drug combos so like you,living with a lot of appointments and uncertainty. And grabbing all the moments I can with my grandson, or being in the pottery studio or at the beach/outdoors.

    Be well and I hope you find a way to send us an update again soon.

    Pots aka Ann

  • jackboo09
    jackboo09 Member Posts: 780
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    Hi to all,

    It has been ages since I posted. I took illhealth retirement in May and decided to give myself this Summer to adjust to this new life. So far things are going well. I feel less pressure and when my energy is low, I can just rest. The negatives are being 48 and retired when people off similar age are still fully in work. Still, it was the right decision and I have no regrets.

    I continue on HP and post on that thread occasionally. I tolerate it pretty well generally. The daily Letrozole though has ruined my knees. I'm currently on holiday in Spain and walking down and up steps is difficult. If I gave it up I fear the damage has already been done. Osteoarthritis. In both knees.

    I see my oncoevery 3 weeks. When he filled my work forms in there was quite a delay on the part of Teachers Pensions. I remember mentioning that to him and he said ' how many times do they want me to write terminal?' I wish he hadn't said that. I know it but I don't need to hear it in that way- it wasn't helpful. So I consider myself lucky to be stable and I do cope with the SEs as it's a case of having to.

    Jojobird- I was saddened to hear your last post. I send my love. Coping with this disease is so so hard. I wish I could offer more but I can't find the words..

    I will go back and read recent posts as I want to catch up with everyone.

    Love

    Liz


  • wildplaces
    wildplaces Member Posts: 544
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    Dear Marian,

    You are immensely brave - yes the blocks you describe are all chronic pain management, and that is a great cocktail - and it sounds like your team are all over it - fentanyl does not tread chronic neuropathic pain well ( or at all for that matter) but it can make you feel good (other agents can do that as well) however those patches are loaded with side effects. Pregabalin and carbamazepine are adjuvant drugs used in this genre of pain - not together - the first can make you feel drunk and the second needs liver function monitoring and can give you nausea. We had 10 days in New Zealand - thought of you - your birthday celebration - it was dry - no snow but glorious - yummy food and wine.

    JoJo

    I have no words - I am so sad you are forced to go through this - nothing fair about it - I really dont know what to say - thank you for letting us know - I think you got that everyone here is HERE if you need a chat.

    Liz

    Great that you are in Spain!! Totally get the steps - I have awful knees!!

    Pat

    well you know 🙂🌷🐣 🙂🐣🌷

    Di - you are never far from my mind - you are connected with the beach forever - and I spend a fair amount of time close to water.

    To all others be as well as you can Ladies,

    Hugs to all,

    Ioana 🙂🌷🐣




  • marianelizabeth
    marianelizabeth Member Posts: 1,156
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    I want to write to all of you but have not got through my morning pain routine yet and it hurts to type with left finger and dictation on my mac doubles on this site and don't know why. But Jo I have to address your latest post only to say I am saddened and will write today at chemo if able.

    Love you all so much and so glad we are posting now.

  • sadiesservant
    sadiesservant Member Posts: 1,875
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    Hi Everyone,

    It's ages since I posted I know. I do check the site but seem to only post sporadically now. I think I'm a bit overwhelmed with renovations, the garden and work these days. Thankfully I just started three weeks of annual leave which should help in terms of recharging my batteries.

    Jojo, I too was saddened to read your news. We all know first hand how devastating it is. I wish there was more I could say to provide comfort. There are no words. Do know we are here if you need a shoulder and don't listen to your MO - you don't have a best before date stamped on your forehead. Each of us responds differently to the meds and there are new treatments around every corner.

    Marian, sorry to hear about your worsening pain but happy to hear the good news that you remain stable. I will be interested to hear what your MO has to say about the pain. I understand completely how confusing it is when the scan says stable but the bones are telling a different story! (My hip, back and lung have been giving me grief but CT says all is well. Go figure?)

    Ann, also sorry to read that you are dealing with progression. Hopefully a switch in treatment will get things back on track.

    Feeling quite lazy today as I have firmly switched to vacation mode (although I worked around the house all day yesterday). My vacation had a bit of a bumpy start - arrived home from work on Friday to find my mother lying on the lawn. She fell trying to pull some weeds, couldn't get up and lay there for an hour and a half. She's exceedingly stubborn, refused to let me get help immediately instead having me running in and out of the house to find something she could use to hoist herself up! (I also had to bring in the groceries which spent that time in the hot car.) She finally agreed to me getting the neighbor and the two of us were able to get her on her feet. She’s fine - just a bit achy. One of my chores while I am off apparently is to get her one of those medical alert buttons.

    The kicker, my dog was so stressed out with me rushing in and out of the house without properly greeting her that she vomited yellow bile... wait for it.... on the brand new wool carpet which was installed on Wednesday. I managed to clean it I think but the area is now a bit fuzzy despite the fact that I was dabbing the spot. Sigh.... oh well, now it’s christened. 🙄

    Ioana always lovely to see you post. Di, you are in my thoughts - please post when you can.

    Hugs to all.

    Pat

  • edwards750
    edwards750 Member Posts: 1,568
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    Jojo -there really are no words. I’m so sorry. This insidious disease has caused so much pain physically and emotionally for so many women.

    I’m not Stage IV but my sister is now. Heartbreaking doesn’t even begin to describe it. She was DX in 2012 with ILC. One year after I was DX with IDC. Our mother had BC and has passed away but not from BC. Her treatments were a MX and Arimidex. Along with that she had a node on her lungs that had to be checked and developed an allergic reaction to the blue dye that caused one of her kidneys to fail. 4 years later she had a local recurrence at the MX scar. They did radiation and she had 2 shots a month.

    A few months ago she complained about horrific back pain that wasn’t relieved by any pain meds. Even worse news she had metastatic cancer to her stomach which is very rare but happened with ILC.

    She’s having 4 rounds of chemo. Had 2 already. Hair falling out and sick. She lives in another state from me so I can’t be there with her right now. My BIL is taking good care of her. Her MO gave she and my BIL an expiration date and st the same time said we can’t cure it but we can treat it.

    She is my only sister. We are close. We are all praying hard for her. My brothers and I live where I do so there is no family member except a niece close by. We have sent flowers and restaurant gift cards.

    Cherish the time you have however long that is. I do that already. I am 8 years out next month God willing.

    Keep the faith.

    Diane

  • marianelizabeth
    marianelizabeth Member Posts: 1,156
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    Diane (edwards750) it sounds as though you and your family have had a very rough time and I am so sorry you can't be with her. Is there any way you could try to make the trip?

    I had a very bad pain day yesterday but today the pain has eased. I see my MO Tuesday at 0900 and have been making a list. Pat, I am going to ask for a PET scan ASAP since it is up and running as of this month. I donated to it when the Bank of Montreal matched funds. I would actually be happier to go to Vancouver because I have complete faith in the head of radiology there. A year ago last June after a report from an MRI here then showed no progression, the scan was sent to Vancouver and the doctor there saw progression~~different eyes I say and that was the end of Ibrance. My faith was shaken.

    Pat, I hope your bumpy vacation start has smoothed out. Does your mom live with you and Sadie? Do you think that your mom's stubbornness has rubbed off on you?

    Diane, how has the Fentanyl patch been going? Also how is your fur baby Riley making out now? I get it that your pets are your babies. I do have kids but our cats are now both 10 and the tabby now sleeps on me often, especially when the pain is bad, like yesterday. As for the chest wall and scapula is the pain still bad? My tumour is in the axilla area but between back and front it seems. My bad pain now radiates from my scapula through my shoulder. down my arm and into my hand. Given your loss of arm, do you think that your pain would be similar? How is the phantom pain these days?

    Liz, how was Spain? And is the HP thread, the med you are on? As for dogs, there are some who do not cause allergies. My sister has one.

    janky I am glad your scans are stable and you are still on Ibrance. I miss the Ibrance days.

    jojo, I continue to think of you often. Your writing has always been so powerful. I have been working hard at writing left handed and it is often painful but I want to do it as well as colour which is now my form of meditation. My daughter was here recently and wants to make a quilt with me. I taught her all I know so she may end up doing the majority but it was my passion for many years and she knows that. If you can, keep writing in whatever form you can.

    Ann, I missed your progression. PM coming.

    Ioana, thanks for the positive info. I am glad you enjoyed NZ and I remember you were on a cruise with your son last year. My SIL who is the same age as me and who did my last Nepal trek I led in 2017 along with her partner, was diagnosed with Parkinsons not long after we returned home and I was found to have MBC. She and partner planned to visit us this month from NZ but she was too tired etc. to make it. One of my wishes is to return to see them in NZ. Dick my husband wants to go if we can next March so we shall see.

    Love to you all,

    Marian


  • dutchiris
    dutchiris Member Posts: 783
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    Hello Marian,

    Do you remember me? We met once years ago. We had tea at a beautiful home in Onalaska.

  • marianelizabeth
    marianelizabeth Member Posts: 1,156
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    Yes I do remember! That was one of those miracle meet-ups. How did you find your way here? How are you? I guess you can see how I am.

  • sadiesservant
    sadiesservant Member Posts: 1,875
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    Marian, good to hear from you. It's so quiet on this thread these days. I wish I had some words of advice on the pain. That's where we need Ioana! But thankfully it has eased for now. Like you I have been waiting to see the PET running - wondering if my MO will suggest a scan now that wait times should be less of an issue.

    You made me laugh at your comment on stubbornness. 😜 Yes, the apple didn't fall far from that tree! Fortunately it comes in handy with MBC. Keeps us going when it would be easy to throw in the towel. And yes, my mother and I live together which, as you can imagine, makes for some interesting dynamics at times. We love each other to bits but also know how to get under each other's skin given how similar we are in character. Of course, I do worry with two of us a bit wobbly at times.

    It's been lovely being off. I am not sure I am pulling off relaxing exactly. There is so much to do around the house. I am hopelessly behind in the garden and the house is still upside down with the renovations but we are seeing progress. At least Sadie is getting lots of walks (probably wishing I would go back to work so she can rest!).

    Speaking of stubborn, you will all think I'm crazy but today I put my resume forward for a temporary advancement opportunity. It's a seven month position doing something that I dreamt of doing when I joined government. I may not be considered but I felt I needed to make sure I didn't short change myself. The future may be uncertain but for now I'm doing reasonably well. The reality is, I don't have much family,work is a big part of what defines me and I don't feel like I'm done yet. (It's made me think a lot about Claire. I recall her moving heaven and earth to apply for and win a dream job. She ultimately didn’t get to start the position but was determined to give it her best shot. I thought I should take a page from her book. 🙃 ) We’ll see where it goes. I may decide against it in the long run (there are some definite no go areas like lots of travel) and there are a few things in play in my current role that could influence my decisions. We’ll see.

    Dutchiris, I see that you have unfortunately recently joined the club that nobody wants to join. I wish it wasn’t so but you will find much support here.

    Hugs to all.

    Pat.

  • jackboo09
    jackboo09 Member Posts: 780
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    Hi everyone

    It is a lovely sunny day here in England. Enjoying the peace and quiet and stillness that comes with an early start.

    My life post retirement is in general much more relaxed as you would expect. I did make the right call whilst still having plans to make to fill up time. I gave myself this Summer to settle in. As a teacher, Autumn has always felt like New year for me anyway. My daughter, Lucy will start her A levels and fingers crossed, both boys will head off to university. Both GCSE and A level results coming up in 2 weeks time.

    I am seeing my oncologist this afternoon. As it is the holidays, I am tying the trip to York in with a lunch with Lucy and I’m sure she will persuade me into some shopping! I will be asking Dr Proctor to refer me for the COC Protocol in London. Even today, the British press has another article with examples of women with stage 4 who are benefiting from metformin and other commonly used drugs. In Sept I am due a scan so I will be able to present the latest info on my current stage of disease. The article is in today’s Daily Mail.

    Pat- go for that advancement if you feel it is what you want. You will be great. Ioana, been too long since we chatted. Lovely to see you posting on here and a PM is due. Marian- you hold us all in your heart on this board and I hope there will be a way to manage your pain going forward. Yes I am on Herceptin and Perjeta until a new line of treatment is needed. Jo- jo a big hug flying your way. Your writing is beautiful and we all have you in our daily thoughts here. Di- how are you and your fur family? The thread has grown so much since my first post. No one wishes to be dealing with this terrible disease, but the mutual support shines through. I only wish we could all meet in person. Hello to all. Pat- I miss Claire too.

  • jackboo09
    jackboo09 Member Posts: 780
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    and Majorca was beautiful. image

  • jackboo09
    jackboo09 Member Posts: 780
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    image

  • marianelizabeth
    marianelizabeth Member Posts: 1,156
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    Great photos Liz and I can see why that holiday was good. Now you get to enjoy a summer too without stressing about school. Autumn is also the time of year I feel is a new start too. I am getting a new start early everyone. I saw my MO this AM and the increasing pain without showing progression on scans has had her thinking too. Signs are looking like progression anyway and she did mention the tumour marker CA 15-3 too. It has had some ups and downs but 51.4 along with everything else has us ending Taxol after 9 cycles. She went through options and decided to try me on Tamoxifen. Then this afternoon she called to say that she had spoken to colleagues and I will start Gemcitibine instead of Tamoxifine next week. Have any of you been on this chemo? The thought is that it might work faster. My pain doctor will also work with my team to see what can be done. There has been talk of another hospice stay for pain management.

    Dutchiris, I too am sorry that Stage IV has happened but I hope you hang in here with this wonderful and supportive group.

  • wildplaces
    wildplaces Member Posts: 544
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    image

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    Marian, as you can tell NZ was glorious but very little snow this season - never mind the roads were dry for exploring. I am sorry you have pain - there are always things to twigg in pain management but from the local concoction you described your team is strong. The chemo sounds milder S/E wise but effective - I don’t know it - just from the posts I had read. And Tamoxifen and it’s new variables ( soon on its tail) can be in your back pocket. From that brilliant picture of you in the Bahamas willing to bet big you will be in NZ in March!!

    Liz, you are right. I read but post less - most of the time I struggle to start - once that is done I can’t stop. You both look happy and relaxed - it was great to see - thank you for posting! I know retirement suits you and I am convinced you have projects cooking. I wrote this last message and then deleted it - your Dr P comment was a frustration with the system NOT about you or your cancer - we are often forced to justify things we can not describe because they are so multifaceted and then forced to oversimplify and thus occ state half truths. In my own work I have often said bring cameras in because I can not accurately describe all the nuances of a resuscitation - film it then you know what happened - unlikely to be accepted for a multitude of reasons but on my part a picture tells a thousand ...so he was pissed big time with them. And he felt comfortable enough with you and your prognosis to drop his guard. In a weird way it’s a great thing. He would have never said it if he thought that was in the future. I hope I make sense.

    Pat - that was the other part of the edited bit - I too miss Claire and Z. Z is my yoghurt and Claire opens up my bottles - since I don’t argue with them, they are my very good friends. I often think of them having a great get together wherever they are - and hope they laugh a lot and watch over those they love.image


    My fav coffee spot at our shopping marina - wishing you were all here.

    To those who have joined our thread lately please keep posting - I love this place and it’s women.

    From a sunny but windy winter day on the GC,

    Hugs to ALL

    Ioana 🙂🌷🐣

    JoJo - I do hope you are reading - I love your writing, read the blog - my prayers are for strength and time. When you are up to it drop us a line - it does not have to be about BC - tells us about your pots in your garden.

  • wildplaces
    wildplaces Member Posts: 544
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    Kingscliff on Tuesday - not a cloud in the sky Di. Well I do need glasses;)

    Thinking of you,

    🙂🌷🐣