Shadow in chest is recurrence
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Marian, I hope the ganglion block provides you some much-needed relief. Please do keep us posted.
I've had a rough few weeks. After my last infusion (which was my final one), I developed debilitating fatigue, and the steroids had me shaking with anxiety. Over the weekend I had several brief, short-lived and fierce fevers which led me to call the doctor but turned out to be some weird side effect that I just passed through. My sciatica has made it near impossible to walk, and so I've been bedridden. My shoulder nerve pain comes and goes. The onc prescribed opioids, which I plan to use only in emergencies, as the ibuprofen and ice seem to give some relief. But it's been hard not to fall into a funk. I've put on a few pounds because I can't exercise, and my crankiness is alienating my family. Not the person or place I want to be.
I've got a CT scan coming next Wednesday and so we wait.
I know I'll bounce back from this funk. But chronic pain impacts everything: mobility, mood, exercise, all of it.
Wishing you all a good day. XO
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Hi Jojo,
I'm sorry to hear that you are going through so much at the moment and wish there was something I could say to make it better. My one piece of advice is to not be a martyr with regards to the pain meds. I understand the concerns regarding opioids but, as you point out, chronic pain is debilitating. It makes it so hard to stay positive when you can't escape it. I do get the hesitance - I've been taking a mild opioid (also using it judiciously) for my hip pain. Now that I have backed off use of it following radiation to my hip I find that it was also controlling abdominal/side pain. Surprise!
As to the sciatica, what about radiation? I had a terrible bout of sciatica last year which we attributed to my lumbar mets. One zap and the relief was almost instant. It was incredible.
I do hope things improve for you soon. Sending positive thoughts for some relief.
Pat
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Jojo, thanks for thinking of me but I think you are having a rougher time than me. sounds like you need some time with one of us, meaning a breast cancer buddy who understands. It can be very difficult with our significant others. wiFI going as we arte leaving the dock.
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Pat and Marian,
Thank you for the kind words. I'm still in a lot of pain but the sciatica has abated and now it's mostly the nerve on my shoulder that's radiating pain down my arm. I had a CT scan yesterday and am waiting for results. Will keep you posted.
Wishing you both healing and strength.
Jojo
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hey Liz, it is true there are more treatment options to manage the disease. My onc continues to speak of years for me because I'm responding well to my meds. You can see my DX below.
I was in a wheelchair in May and now I can walk and am about to take a 5 hour trip to my family in Louisiana. Hold on, please let us know how things develop. Hugs and Peace.
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I have some unfortunate news.
The CT scan results came in. Despite Taxotere and Xeloda both, my tumor has nearly doubled in size. Three new lesions on my lung are "suspect for metastases." I'm in shock and grief, and we meet with the doctor Monday to find out what my next options are. But this tumor is growing *quickly* and I'm afraid time is running out.
I'm so, so sad, and angry, and scared. My husband and friends have been rocks for me, and I'm so grateful.
I'm also in a lot of shoulder pain, probably because the tumor is hitting a nerve. My sciatic nerve is also giving me hell. I'm on painkillers daily, and I don't know if I'll ever run or hike again? Maybe that's just my doomsday mind.
It's a sad day, can't sugarcoat it.
Love out.
Jojo
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Jojo,
I’m so sorry to here this. I can only imagine how frightening it is for you. But surely there are other treatments they can try? I’m not up to speed on triple negative but is this not the BC that responds better to immunotherapy? Please don’t give up hope.
First order of business is to get your pain under control. Can they use radiation? It’s so hard when we are hurting.
I wish there was more I could say. Just know I am thinking of you and sending a virtual hug your way.
Pat.
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Hi Jojobird
I’m very sorry to hear this news. I hope you come back and report that there is a new plan on Monday and that your pain can be controlled.
Liz x
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Jojo, i am sure you are losing sleep waiting for tomorrow and the pain can't help. I am a lot of drugs, mainly methadone with hydromorphone for breakthrough. If it is nerve pain I know how difficult it is to control. I had what is called a stellate ganglion nerve block nearly two weeks ago and because nothing up to that point had helped my neuroovascular pain I was doubtful but it has helped a lot so you might mention that. An anesthetist who also does nerve blocks as a specialty did mine.
I honestly cannot remember when I posted here last but my tumour is also growing fast along with hotspots on my sternum and fifth and sixth ribs. I am now on Xeloda too and have done two cycle. I saw on a recent report that I will be having another MRI as well as a full bone scan and chest CT. Since these where all done in June I have to wonder what is going on.
I am a lot older than you so when I whine about no more trekking, I think of you and how much more important it is for you to be hiking again.
Please keep us posted tomorrow and know that I am thinking of you.
Marian
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Thinking of you Jojobird and Marian. You have both been in my thoughts today.
L x
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We have not heard from Diane for quite awhile. Are any of you in closer contact~~i.e. Facebook?
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No unfortunately. Also worried but maybe she is just enjoying the view of her garden from her new deck. Hope so.
We’re thinking of you Di. Please check in when you can
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Di, chime in when you can. We are all thinking of you.
Liz
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Thank you all for the support. And I am sending Di good thoughts and hope she is well.
More limbo, ladies. I meet with a surgeon next week to discuss that option. Two more scans to go as well. Also on the table is more chemotherapy, possibly immunotherapy. In the meantime I feel like I have a golfball under my arm, am on painkillers, and just started taking CBD. Hard to stay upbeat.
Doc said I should start doing any traveling that I want now, which sounds ominous, but I also appreciate the heads up.
Will try to walk today for a mile or so. To think that last month I was running 5-10k and hiking in the mountains. Now I’m glad to hobble around the block.
But: I am here. My daughter and husband are ok. There is coffee, this board, a small garden to tend. I’ll take it.
Love out.
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Hi Jojo,
Hopefully they will get you on a plan soon and you will once again feel you are moving forward. The limbo phases are just plain torture.
I also struggle with how quickly things can change for us. While I enjoy work, I always worry about the what if’s and will I regret not chucking in the job to enjoy my life more. No matter how much I appreciate being engaged and productive, it does take time away from having fun and creating memories. For that reason I appreciate the honesty of your MO. To date, mine has not been so forthcoming (recognizing I am not experiencingwhat you are). Ioana and I have spoken about this a couple of times and they really just don’t know but I do hope mine will signal when I might want to focus on me.
Take good care of yourself. Pat.
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Dear Jojobird
I am on a train from York to my home town, having just had a treatment. Have thought of you everyday since your post. So very glad to hear that there are further plans to tackle this progression.
You sound like you have a rock solid support system and a beautiful garden in which to escape.
I hope your medical team can find some effective treatment for your pain.
Much love,
Liz x
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Liz, Pat, and everyone else,
Thank you so much for the kind words and support. It's been a very difficult time. We're having to decide between treatment options and right now are just weighing what those might be.
In the meantime, the tumor under my arm continues to grow into the nerves and is causing a lot of pain, and it makes it difficult for me to stand, or write, or walk, for more than a few minutes at a time due to the nerve pressure. Opioids help. I've also started CBD oil to deal with some of the anxiety and pain.
We'll decide this week on our plan and then move forward. I'll post later. In the meantime, it's just pain management and getting through each day. I miss health. I miss living pain-free. I hate cancer.
Love out,
Jojo
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Hi all
I go to York tomorrow for my latest scan results. Wondering how everyone is and sending love.
Liz x
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Hi Liz,
Sending positive thoughts for your scan results. How is work? How are you finding things now that you are down to three days per week? I keep fantasizing about that schedule but, to date, have not managed to find a way to get there.
All good here but busy. I'm working like crazy both at the office and around the house in a concerted effort to get rid of the excess. It is such a SLOW process. Most of our things are not out and out junk and, the environmentalist in me won't allow me to just throw things in the trash anyway. As a result, it takes a lot of effort to either sell it or give it away. There are a few things that have gone on a free pile at the road which is typically a very effective way to get rid of the odd assortment of household items - I find it somewhat mind boggling what people will take!
In other news, I had my three month appointment with my MO. He feels that things are going well but is ordering bone and CT scans to confirm. In his view, if we see only a small amount of progression in the bones then we stick with Faslodex. Not sure what the belly will show however as the pain in my abdomen is more intense. We'll see.
Interestingly my tumour markers are now in the normal range (as my MO put it "for what it's worth"). Clearly they are completely useless for me. They have never been very elevated and this fluctuation may have more to do with a change in laboratory (hospital lab versus private lab) than anything else.
Let us know how your appointment goes Liz. I'll post once I have had my scans and know the results.
Hugs. Pat
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Hi all, I'd like to start by saying how heartbroken I was to read of Claire's passing. It really hit me hard.
JoJo I'm sure the Dr has plenty of treatment plans up his sleeve. Getting pain under control is a must. I signed up yesterday for my medical marijuana card. Looking forward to getting the oil to help relieve phantom pain and scapula pain. Please let us know your test results and treatment plans.
Liz how's the short work week treating you? Also keep us updated on test results.
Pat clearing out the junk that's exactly what I've been doing. Don't know how I've accumulated so much. Will keep you in my prayers while waiting for your bone and Ct scan.
Loana how are you doing? Any pretty sunsets? I captured a beautiful sunset the evening I got home from New York City. I will post a picture.
Marian I replied to your email. Thanks for checking in. Was so happy to hear that the pain blockers have helped.
Picture I got after a storm passed. A double rainbow!
So I went to New York City on the 17-22. On Tuesday I had appointment to get my medical marijuana card. Wednesday I had a dentist appointment. Thursday I have MRI to find out what's going on in my lower back in spinal cord. Dr thinks it's inflammation but wants MRI to be sure. I feel ok. Phantom pain still hurts and so doesn't my scapula especially wearing a bra. I think it hurts more wearing bra because the straps are pushing on scapula. I will post more later. Need to shower and get to bed. Mri at 8am
Love to all! Hugs Diane
Sunset on September 22nd
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I need to be brief as I have a full day ahead (conducting interviews - yuck) but I am so happy to see you on the site Di. The photos are beautiful. I'm glad that you are looking at medicinal cannabis as well. I have not tried it but there are many incidences reported in which it helped a great deal with pain.
I agree about Claire. I hit me hard as well and I still find I think about her quite frequently. Amazing how we can build lasting friendships on this forum.
Must run but yes... amazing how we accumulate stuff. I need to live to 100 to get rid of it all.... Now there's a plan!
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So good to email and also see you here Diane and love the photos especially the last one. Jo, I agree about the opioids and have never regretted taking them despite constipation. For you with nerve pain I know it is hard to get on top of the pain.
I am still on the same amount of methadone but not having to take many breakthrough hydromorphone side my nerve blocks. I had a full bone scan today head to toe. CT with contrast on Monday and thankfully the MRI is not until November which my MO and I agreed on since we are going on a Danube boat cruise Budapest to Prague late October. We are going our with two close friends and are sharing an Airbnb for 3 nights in Budapest at the start and 3 nights in Berlin at the end. It works for me since I can stay back both on the boat and in our rentals. I am struggling with my husband's transition to being on land. We had a good time on our boat this summer where he is captain. He just went off to the monthly spousal support meeting at the cancer agency which I encourage and he usually does come back feeling better.
Pat I can't believe how you work so hard both at work and at home. I have been doing some low dose 10:10 oil but can't say I notice anything but will continue. Liz let us know scan results and I will do the same.
Love to you all,
Marian
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Hi all,
Di - happy to hear New York was a great trip - love the photos !! Di - I miss Claire's kindness, elegance, eloquence and wit - and that just skims the surface. I imagine her looking down and often wonder what she would make of my wine food pairing. I will never think of a Faberge egg without Claire - she loved beautiful things.
We went to the snow. Spring in the mountain is glorious. I had the flu.
Marian - the cruise down the Danube sounds a dream - enjoy and pictures please. Happy methadone plus the blocks are working for you.
Pat - you know my thoughts.
Liz - keep us posted on that scan.
Jojo - I have read your posts and I don't know what to say. Please tell us what your MO next move/plan is.
I am ok as you know - working, garden, chooks, trying to stay healthy - and finding the basics of sleep, good food, time for myself, some exercise challenging.
Hugs to all,
Ioana 😊🌷🐣
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Hi to all,
I am on a train to Brighton with my son. He has a university open day tomorrow at the medical school.
My scan was clear and I am very grateful and relieved. I scan again in April which will be 2 years out from my stage 4 dx.
Please forgive this quick checking in post as my eyes are drooping with the motion of the train. I will post again with some mum and son pictures and of course a longer response to you all.
Best wishes,
Liz
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Liz,
Thrilled and happy for you - looks like HP is a match for you!!! Enjoy the day at Brighton!
Ioana 😊🌷
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Wonderful news Liz. Amazing how quickly two years will have passed. Hoping for similar scan results leading up to my two year mark at the end of December.
Beautiful photo Ioana. So sorry about the flu though. What a drag!
Marion, hope you have a lovely trip.
Looking forward to the weekend. Must say I am ready for it. I do find my stamina is not what it was. Thank goodness for a few days to get a bit more rest. The trick is to keep myself from overdoing it. I feel like I’m on a roll - got rid of a tiered corner unit today, have someone hopefully lined up for a pet gate and a commitment from someone on an old car tools! 🥂
Hugs to all. Pat.
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Hi Ioana and Pat
Thank you so much for your kind wishes. I am very lucky to have this response. It does seem to be a lotttery thing. I will PM you if I have WiFi on the return train journey tonight. This is a whistle stop visit.
Pat, wow 2 yr mark in Dec for you. Time has flown. I am in awe at your sorting skills. I am hopelessly lazy at clearing out! X
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Liz, I am so happy for the clear scan results, and for the time you have with your son. Am so grateful and glad that for this relief and celebrate with you.
Di, these are lovely photos and remind me of the need to notice things. How are things going with CBD/medical marijuana? I'm having to adjust dosages and have settled on taking it at night, as it made me sleepy. Am interested to hear how it goes - and good for you for taking care of yourself.
Ioana, I'm sorry you had the flu. Yet the pictures look glorious, and I'm so glad you had some time to be in nature. The photo is breathtaking. I hope there were some times where you were able to be flu-free - the flu stinks.
Marian, I am in awe of your travels and ability to move about given the pain and medications you deal with. May I ask: how do you manage it? I want to travel a bit but am reluctant to do so given that I wake every day with back and shoulder pain. Relief kicks in after ibuprofen and an opioid, but those are temporary. How do you manage travel with pain?
Pat, am in admiration of the de-cluttering process and am praying that scans don't show progression.
I didn't know Claire, but I hate how this disease steals our sisters and brothers away, and send her love, and healing, and safe travels into the unknown.
My own scans came back clear - no mets. So, surgery is the likely option right now. But I'm oddly detached these days, kind of neutral, not celebrating but not really depressed either. Can anyone relate? I've become much more matter-of-fact, less elated about "good" results, all because I'm not trusting this body so much anymore.
Surgery in the next two weeks and then a likely 3 week recovery.
One day at a time.
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Hi Jojobird
I hear what you are saying about a kind of weird detachment. We all just want to be out of this crap for good, including primary cancer patients as they are always filled with worry too.
To balance your news though, you do have good news if there are no other mets. I so hope surgery gets rid of the cancer and returns you to a life without pain where hiking and travel are possible again.
Sending huge hugs.
P.s here I am with my son Jack in the seaside town, Brighton. The image captures how incredibly grateful I am to have shared this day with him. Precious times and I won’t ever take them for granted.
Just tried to attach photo but no joy. Will try again tonight.
Liz x
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I have surgery today ladies. They bumped up the time suddenly because the tumor is growing.
Will keep you posted.
Joj
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