Shadow in chest is recurrence
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Hi Ioana,
Thanks for the support. Would love to imagine healing lesions but unfortunately these are new (post January scans). It's a bit discouraging but I'm sure my MO will help me to beat the buggers back.
As to the pain, thankfully it's not mets related. It's just this damn catheter. Hard to believe but I guess when the surgeon injected saline to check to see if it was clogged there was enough force to rip the areas of adhesion between my catheter, the chest wall and my skin where the catheter runs from the back of my chest to the access point at the front. Hurts like the dickens and makes it hard to lift anything, or use my right arm much. I'm sure hoping removing it is not as painful. (And thanks for the drug list. I'm only familiar with Tramadol. Makes me vomit 🤢)
I know what you mean about work. Working is a big part of me but these last couple of months have made me realize that I don't have the stamina for the long days and high pressure demands. They are trying to be do supportive at the office but when push comes to shove, at my level, the expectations are high and I'm just not sure I can deliver or that I really want to try anymore. I'm trying to take a page from Claire's book but I think she's tougher than me.
Need to look at my finances again. 😏
Take care everyone. Hope to hear from you soon Liz.
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oh no ...I can believe it - pleural drain catheters give you a triad of nuissance - I have never had one but I have seen reported - pleuritic pain ( with inspiration ), local wall pain and then referred pain - usually shoulder from irritation of diaphragm - cervical 3-4 referral.
It is particularly tough as it responds poorly to morphine like drugs - opioids - endone and codeine containing being mostly prescribed. The only thing that gets rid of it entirely is a subcostal nerve block with local anaesthetic but they only last 6-12 hours (unless a catheter is in for a few days), so very few are done long term.
I would try a local anti-inflammatory gel - if you are not allergic to them or have renal impairment - to that area.
The good news is taking them out is generally painless - some tugging but that should be it.
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Hi ladies,
I hope this post finds you well. I have posted a few times on the Herceptin/ Perjeta thread. I am eternally grateful to those who have responded. I'm sure I am not alone in needing that specific support from those who are ahead of us on a particular treatment. Dropping Taxotere was a big deal or me, however I have positive things to report about my current progress....
First HP was last Thur. Lucky to have another great nurse, called Richard. He was a bank nurse, meaning temporary staff as his other job was managing 2 cafes in York. Anyway he was fab with the cannula and said my veins were ok. It didn't hurt and there is no mark or visible bruising. He also talked to me about my anxiety and gave me time. Really wonderful chap!
No notable side effects other than fatigue day 1. I have managed a long bike ride today and am feeling great.
My next scan will be at the end of Aug and I meet with Dr P 14th Sept.
This Thur is the meeting with the Sheffield team about possible rads. I am trying very hard to just deal with appointments on the day so will report back afterwards.
Ioana- you are ahead of me in terms of returning to work. Isn't it funny how attitudes to work change. Work can have its benefits in terms of giving back that precious normality, but equally we are less tolerant when our lives suffer from its negative impacts! I will see what happens in Sept!
Claire: you go for it! Living life! I admire your outlook. I am crossing my fingers that the new treatment will be successful.
Pat: I send you healing vibes for success with your treatment and I know you want to take a trip as I do....
Di- how are you?
Much love
Liz x
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Pat- really sorry to hear about you having pain. You have put up with so much.
Huge hug to you and I'm thinking of you.
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Hi ladies!
Pat so sorry to hear about the pain you are having. I was hesitant but i started using marijuana for the phantom pain. It helps alot. Instead of my amputated arm feeling like dead weight and me constantly trying to support it. The marijuana makes it feel alit lighter and also have less shocks. I'd rather do marijuana than opiates.
Liz i'm sending prayers your way for good scans. We go through so much during our treatment and your a fighter!
I really need to take notes so i can address all of you! Making a mental note to do that cause tou are all such wonderful ladies!
Prayers and hugs to all!
Diane
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Hi Di
Pleased to hear from you. Also happy that you have found some pain relief that is working g for you.
Thanks for your good wishes. I am trying to conquer the mental battle of anxiety and living day to day is helping and with the help of a good friend am making some progress.
Last time I think you mentioned having more chemo? Did this happen? You deserve a break my friend.
Morning to everyone else. I think of you all every day.
Liz x
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Hi Di,
Your instinct is guiding you WELL through this maze - you are right to try and stay away from opioids as much as possible/if you can.
http://www.nature.com/bjc/journal/v111/n5/full/bjc...
There is also some work showing that marijuana too might have some immunosuppressive effects - but much much less lit on it. The most important thing is that it works for you - thus youare able to take care of yourself and be as well as possible.
Liz,
Good to hear from you!!!😊
And great to hear that you are thinking of getting back to it in September - work is important but for me I miss the time freedom I had when I was at home. Wish me luck finding some middle ground.
I have three roosters - honestly only one hen - some exchanges will have to take place...but I am enjoying this little project.
Hugs aplenty to all - SadiesS will think of you on Wednesday !!
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Hi All,
I am happy to report that the pain from the catheter has finally subsided. After this last week, I can't wait to get the darn thing out! Just a couple more days and, of course, today I find out what our "Plan C" is for treatment. Should be an interesting discussion with my MO. We have a great relationship though - I'm very fortunate that I was referred back to him when I was re-diagnosed.
Ioana - I had to laugh as you explained the shoulder pain. Stupid catheter. As to the chicken situation... poor hen. You might want to consider reinforcements for her.
Liz - So glad to hear that the treatments are going well and that you are preparing to return to work in September. As you say, work provides normality (and pays for those nice trips that Claire keeps going on) but does present some challenges. With my situation, I worry about being dependable. This last week brought that home with a major reorganization taking place and additional responsibility on my shoulders as acting ED. Terrible timing as I was too sick to function Wednesday (the day after the announced restructuring) and felt terrible Thursday/Friday. But thankfully, today is a better day and I feel capable of doing my job. I do enjoy my work, am happier when I am productive and yet, some days......
Sending hugs to you all. Pat
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Drumroll... the strategy is... stick with plan B. I'm staying on the Anastrozole/Ibrance combo (although my MO wonders if we should drop the Ibrance given there are some toxicity issues - fatigue and blood). He also thinks the lesion on my chest is less and feels it is less pronounced (great to have a second set of eyes confirm this) and was quite pleased by this result. Makes me glad I made a note of letting them know at the Cancer Agency when I noticed that it was not disappearing after it showed up in late February! I also have a much better sense of his thinking on ongoing scans which makes me more comfortable.
I'm pleased with the outcome of today's appointment as I really was not convinced it was time to jump to another treatment - yet. Oh, and his theory on my reaction to the saline injection? He thinks I must have had an infection and the saline pushed it into my lung. That would explain the chills, spike in temperature and the nausea. Can't wait to have the stupid thing out!
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Ohh SadieS that is great news - I kept thinking it was far too early to drop a treatment...
Still what did he/she say about the pesky bone spots - sclerotic and all??
Z - has a great post on taking Turkey Tail - Coriolus to help with blood counts specifically white cells.
Also Claire dose Vit C injections to help with fatigue - I take 2000mg daily of a good VIt C supplement.
Dosing with Ibrance is tricky - and although lots of MO don't like dropping below 100mg, my feeling is that some people sit nicely on 75mg with less side effects.
I also often wondered why the 3 week on and one week off - why not for example 2 weeks off for a slower growing tumour profile - where nothing is going to happen very fast and you would give the patient a longer time to recover immunity before they get hit again...but you know me, my thoughts and my chooks...
( absolutely the sex ratio needs to be more balanced - two of the rooster will have to go!)
Hugs to all,
Ioana 😊
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So... the infection saga is not quite done. I was fine earlier today but by late afternoon I had the chills again. Checked my temperature when I got home - 38.6 degrees. Damn. Checked a few more times, then emailed my MO. This was well after regular hours so I figured there was a good chance he would not see it. Took temp again - now up to 39 so called the one on call. Clearly my body is having some challenges fighting this and I am not sure how neutropenic I am at this point (likely low but not rock bottom).
Unfortunately I can only describe the on call onc as an ass. Either I wasn't explaining myself well or he wasn't asking the right questions. He kept asking me what advice my MO had given me about going to emerg. I explained about the catheter and about the Ibrance. Problem was, he doesn't know anything about palbociclib as his specialty is neuro by the looks of things. He closed by saying, if your temperature doesn't come down or you feel appreciably worse, go to the ED.
Problem is, if I can't get his attention I have a snowball's chance of getting them to understand the situation in emergency. I've been down this road before when I was on the heavy duty chemo, had no immune system and was on antibiotics for six months as a precaution. Despite the antibiotics, I had two blood infections, neither of which were taken seriously by emergency (they had to call me back in when the blood cultures came back positive for Klebsiella. In a nutshell, I don't present.
So, I took two Tylenol to knock the fever down and will deal with this tomorrow. I anticipate my MO will call but I will also let the surgeon know. More than one way to deal with this!
As to the bone mets, it was not a long discussion. He mentioned that CT is not the most effective tool for detecting bone mets and also discussed the drawbacks to bone scans, particularly given the challenges of determining if they are signs of healing.
He did suggest I could drop the Ibrance as it seems to be showing signs of toxicity in me. Not yet. I also wonder about another dose reduction. And apparently there is a new study looking at five days on two days off. Apparently someone's MO suggested Pfizer is feeling the heat with kisquali nipping at their heals and the third one on the horizon. Still much to learn about this treatment.
Thanks again for the support and I hope your hen has company soon.
Pat
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SadiesS
Although you clearly have this under control a temp of 39 in a neutropenic patient requires at the VERY least a solid history and examination, a full blood work up: Full blood count, urea and electrolytes, liver function tests and three sets of blood cultures, chest X-ray. and urine culture.
So as horrid as emergency departments I would seek their help sooner rather then later. Meanwhile keep super well hydrated.
Your MO explanation of a shower of bugs from the site (especially if the skin is red etc) is very plausible but really with low white cells it can be anything.
Your MO sounds super wise and sensible and it is cleverto focus on the organ causing symptoms - lung at present - if that responds the rest will too and once stabilised other issues can be fine tuned.
You are right about the dosing with Ibrance - I will pm you on it when you get this sorted.
Abemaciclib is the third drug - not out yet but apparently trades low white cells for diarrhoea.
I will keep checking this thread - I am very worried about this temp!!!!
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SadiesS - you know when I said sooner I meant if your MO/surgeon does not call back - like NOW.
Hugs aplenty - I am not trying to worry you - genuinely veryconcerned about that temp
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Thanks Ioana,
I am taking it seriously but feel my MO or the surgeon are better placed to make a decision on this. (And BTW, my MO is a prince! Bit of an absent minded professor at times but I'm kind of a control freak - can you tell? - so I can work with this.)
Just up to get ready to start the day and, as has been the situation for the last week, no sign of a fever. Bit headachy and nauseous- infection also explains the nausea that has been gripping me for no apparent reason - but otherwise fine. I am sure I will hear from my MO once the on call onc connects with him if not sooner and will also reach out to the surgeon's office once they open. He may want me at the hospital early tomorrrow to do the blood work. I'll let you know. Oh, and other than the cultures and the urine, I just had the rest of the blood work last Thursday but I can't easily see the results if they are done through the hospital.
There is always a draw back to these drugs. Diarrhoea huh? Shoot...
Hugs Pat
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Gosh YOU are tough - good to hear you are feeling a little better this morning!!
😊
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Ioana, you will be happy to know that my faith in my MO is well founded. When I checked my phone this morning, he had actually sent me a message late last night indicating I should go to emergency. Unfortunately I didn't get that message until the morning but he jumped into action this morning, connecting with my thoracic surgeon to outline the history and concerns. I have a nice shiny bottle of antibiotics waiting for me at my friendly neighborhood drugstore which I will pick up within the hour. Hopefully this is the magic pill (bit of guesswork on the nature of the bug but in the surgeon's experience best bet is Amox Clav. I'm always astounded at what wondrous things antibiotics are. In my experience, I feel so much better within 24 hours. There may be an opportunity to fine tune tomorrow when they take the catheter out - I'm assuming that's the best bet for a culture.
Thanks for your concern. It means a great deal to receive such support from across the miles.
Now about those chickens....
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Ok, Amox/clavulanic acid is an oldie but a goodie - the clavulanic acid increases the spectrum of the amoxil ( are you taking 875/125 twice daily?) however it can make you feel yucky - nausea mostly.
If you are taking amoxil/clavulanic acid they probably will not culture anything off your catheter unless it's a crazy bug, but they should still send off the tip.
The very tricky question you need answered is IF you spike another temp on antibiotics aka tomorrow..how long does your oncologist wait until he asks blood cultures ?? The conversation easy answer is straight away - but cultures are super difficult to read on antibiotics.
So for now rest, lots of natural yoghurt and a good brand prebiotic please. Also hydrate widely - chamomile and linden tea are particularly calming if you tolerate the taste.
Hugs aplenty,
Ioana😊🌷
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Sorry, now you are talking in code.
It looks liked I am on 500/125 three times daily. What does the 500 mean? Assuming, of course, that 125 refers to 125 mg? Hopefully the nausea will not be that bad. Rather hoping to get rid of this already yucky feeling. Fortunately natural yoghurt is part of my daily regimen, just need the probiotics. You didn't mention the therapeutic effects of wine?
Only a seven day cycle so perhaps they are planning on a possible switch?
Thanks again for the support. No fever tonight thankfully. Just pain from the catheter. Sigh...
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It does. 500 mg of amoxil which is a penicillin and 125mg of clavulanic acid.
The general wisdom is to keep away from alcohol - not so much because it stops most antibiotics working ( although they are clear interactions with some antibiotics - metronidazole being the most quoted but also some of the cephalosporins) but because it may worsen side effects from antibiotics or make you dry , or add to liver work load.
If you want to have a small glass of wine and feel up it and do everything else right - resting being a big one - it should be fine.😊🌷🐣🍷
You have some great Keffir in Vancouver - we don't have it down under in supermarkets.
It's starting to feel like you might catch a break - when this is sorted and the catheter comes out - you are still on plan B which is really good!!! Maybe they are planning to get your catheter out soon so then you only need the 7 days (ahhh maybe 10 days...)😉
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Hi Ioana,
So much for a break. I thought the antibiotics were doing the trick but I'm completely exhausted (already spent half of my Saturday sleeping - was up for two hours and now need to rest again), my chest hurts, I'm coughing and my temp spiked again last night (always on a Friday night!), three days into the antibiotics. No temp today, feeling yucky but that's probably the antibiotics despite the probiotic/yogurt regime. What the heck? What is with this stupid temperature? I m stumped and not sure what to do. Seems to me this is something for a respirologist and not my MO, although I know he will try to help.
What could cause these periodic? Pneumonia? Sure am tired of feeling crappy. And to make matters worse, work is completely nuts at the moment. Lots of pressure, unrealistic demands even when I was at the top of my game. Hate leaving folks in the lurch (and really hate giving in to this) but I feel like my knees are starting to buckle.
As always, any advice would be welcome. Hopefully temp will stay away as a trip to emerg is not what I need!
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SadiesS,
Hey....look it's hard to tell what it is from this far but chest is the most probable cause.
I think you are right you should SEEKthe advice of a respiratory physician.
A patient who is immunosuppressed - and you have both drugs and cancer as culprits - needs a full septic work up in the face of ongoing fever (especially if on antibiotics). Basically you hope to isolate the organism responsible for this, especially if you are still spiking temps. You could argue that in someone with an immune system compromised it might take longer to get a full response - still by the same token without the bug on a plate you really don't know what you are treating.
Blood cultures - ideally taken when the fever spikes - times three
CXRay
Routine cancer bloods - Full blood count, urea and electrolytes and a set of liver dinstion tests
Urine - dipstick and culture
Would be a minimum.
Now IF this in your chest:
- bronchi - bronchitis
- lung - pneumonia or a pneumonitis ( you need to CXRay and bug to diff)
- pleura - pleuritic
The spectrum of amoxil/clavulanic acid is wide and includes both gram positives and negatives and covers both chest and urinary tract - but does not include atypical organisms.
The shit thing - don't get disheartened sometimes you can have the work up and nothing shows up and you do get better with same or a change of antibiotics.
What is also true is that is you have an agreesive bug not covered by the antibiotics it will show up.
On the work front - I can only imagine how challenging it must be - actually no, I don't think unless you live your Stage anyone truly can ....bugger it - my only advice is what I try and tell myself about 6 times a day - you can only deal with things To the best of Your ability, and at All times you MUST make your health your priority. It's quite humbling and I am not feeling unwell, just a little bit sluggish cf prediagnosis levels.
So on a practical level - take a big breath in - I wondered if the catheter is still in -it's out - GOOD - and GET more advice, tests and/or change of antibiotics - preferable all three.
Hugs,
Ioana
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PS if this is infective - which it mostly likely is - the temps spike at night.
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Thanks. One good thing is that my neutrophils should be good. We've been holding off on the next round of Ibrance so I have not taken any for a couple of weeks. And yes, the cycle of the temp spikes is always the same, chills late afternoon and fever early evening but I go days with no problem and then....
As always appreciate your advice.
Pat
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Frustrating and scary for you Pat. I share your reluctance to go anywhere near ER or A&E as we Brits call it. However, I hope you are ok as I've felt quite worried for you.
Issues like this always happen in the evenings and weekends!
I'm hoping your next message shows some relief Hun.
L x
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Thanks Liz. Feeling a bit better today but tomorrow I'll call in reinforcements to see if we can figure this out. The biggest challenge is getting the right doc on the case as this is really not within the realm of my MO. Need to see a respirologist I think but I'll know better tomorrow once I get things rolling.
Pat
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Ok - caught up on the Ibrance thread - SadiesS - sometimes loculated pleural effusion especially in malignant may be sterile - or a the very opposite - a quick to isolate a bug.
Big hug for Thursday and getting answers!
Did you have a run with Klebsiella on Chemo or am I just nocturnal and ..?
Speedy back on top - hugs aplenty,
🙂
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Planned to post here in the morning as this bug is now officially wiping me out. Fevers appear to be nightly now, at least I had a temp two days in a row which has not been the norm. Staying home from work which is practically unheard of for me!
Yes, I had two dances with my friend Klebsiella when I was on chemo. That's partly where I developed my aversion to emergency. Nice people but I never present the way I should so am not taken seriously. I can be at deaths door and still look healthy.
It's a family thing. A few years ago my mother had an abscess on her bowel that ruptured. She had been sick for a few days with a low grade fever and finally went to her GP. He sent her by ambulance to the hospital but even the EMTs didn't understand why she was going. At one point the emergency room physician was convinced it was a hernia and spent 15 minutes trying to push it back in place in her gut. Then they sent her for a CT scan. Fortunately, her gastroenterologist was on call and in surgery. He rushed her in right away but she was a mess with infection in her colon, her bladder, the lining of her abdominal cavity, etc. Her physician indicated she was probably within a day of death and yet nobody would have believed it to look at her. And I will always remember that ER doc pressing on her gut trying to "put the hernia back in place" likely pumping fecal material everywhere. I understand the challenges and certainly bear no ill feelings, my mother was very fortunate, but for me, emergency is to be avoided at all costs! I'll go if there is blood involved or bits dangling. 😉
Thanks for checking in on me. Hopefully by Friday we will know who I am dancing with this time. Cheers. Pa
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hello SadiesS,
Yes - I understand 🙂 totally - unfortunately emergency departments are often (aka always) understaffed both in terms of number and experience of doctors.
I am 49 - I have been to A&E or ER as you call it with my parents twice in the last three years - all ok in the end - but let's just say it was not straightforward by any means. Probably the most candid moment was with my mother who is a very experienced clinician now retired and in her 70s, she hugged her ER doctor (after he just said 'I am sorry we should have done earlier' ) and said " Its ok, I know you were afraid, but that is what you had to do, and you managed it in the end".
So it's a tricky balance but you seem to have it all WELL covered - hope you'll get some breath back by the week/end!!
Liz,
How are you ??
Appetite? Energy levels?
Check in when you can.
On a lighter note - I roasted some red onion today with olive oil - they were the sweetest thing...and had them with ricotta and pecans on toasted wholemeal bread. Claire what are we toasting? Or champagne of course?
🙂
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Lord that sounds good. I am so looking forward to being able to enjoy food again instead of forcing myself to eat (and regretting it as soon as I do). This bug is playing havoc with my GI a bit as well, mostly nausea and nothing tastes right. But I've lost a bit too much weight since December to turn my nose up at everything.
And to add insult to injury, an old colleague with whom I shared many stupendous meals and even better bottles of wine just invited me to a champagne extravaganza in mid-September. It's a fabulous event with several flights of champagne paired with nibbles prepared by Victoria's best chefs. Quail's eggs and caviar, foi gras, chanterelles in a cream sauce served in Choux pastry.... yum....I better bloody be over this!
But I'm sure if we can figure out who exactly has taken up residence in my lung I will be back to normal in no time at all. Let's hope so.
Hope you will check in Liz. And Claire, any news on the treatment?
Hugs. Pat
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Hi guys
Just catching up on the posts since Jul 30th. Pat- you have had a truly awful time. How is the bug/temp now? Praying you are soon coming out the other side.
Yesterday 1st August was my 47th birthday. I was lucky to feel well enough to enjoy a lovely celebration with some of my immediate family. It is only a short time ago that I could not even consider leaving the house and so now I am eternally grateful for the good days.
I had both lunch and dinner out at local restaurants. Had tummy cramps later on which was a shame. However, the sea bass at lunch time was delicious with a glass of fizz.
This Summer holiday period is a strange one for me. I feel like I am in limbo. Waiting to start work, waiting for a scan, waiting ( still) for a decision on rads....
Luckily I have a short break booked with Richard. It means leaving the teens alone- yikes!
So how is the mental battle- I would have to say better. If my mind begins to stray I just repeat " one day" this is my way of telling myself to focus on the here and now. Physically I am definitely picking up now that Taxotere has gone!
The rads appointment on July 27th with Sheffield was cancelled by the way. A nurse called me at 6pm the night before. I was very angry that day but have since let that ship sail. Eventually they will decide if I am a candidate and to be honest I am worried about SEs in the chest area. Perhaps I am beginning to just push things to one side as there is so much to deal with when inevitably this disease rears its ugly head again.
The roasted onion recipe sounds truly delicious. I will now wrack my brains for something for dinner!
Hugs
Liz x
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