Shadow in chest is recurrence
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Liz - broad spectrum wine is what you need now along with Bulgarian yogurt. Enjoy! Ioana you are fab. Come help me with Afinitor.
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Had yet another appointment with DVT doctor. The DVT was caused by the mass pressing on the internal jugular vein and not triggered by the cancer.
He is confident that no pulmonary embolism will occur. He has reduced my fragmin dose and after chemo will change to a tablet. I can drink moderately now on fragmin and on the tablet.
He will send all reports to York now. I had Lucy with me and so was not able to ask what if it doesn't shrink away from this vein? Maybe this is why Doncaster were so worried about the position. On the other hand Dr P in York had not had any comments to make about this worry and said he has never known it invade key structures but then again he never said it was compressing. Up to this point I was not aware.
Another dip- so it's vital this chemo shrinks away from the vein. Yuk yuk scary yuk,
I should have asked for clarification on this but had Lucy with me, maybe best not to know.
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JackBoo, still following your ongoings and hoping for all the best for you!
I see here you say DVT is caused by pressure and not cancer. How is this known? I'm wondering about the exact same thing for my situation. I originally figured it was a pressure thing since my arm *nerves* are also being impacted (nerve impingement for nearly 3 mos now). But originally I didn't know that active cancer can bring on DVT / clotting. And, my MO seems to attribute the clot (internal left jugular) to the presence of active cancer. So, how does your DVT person know the cause? And what is the specialty of your DVT person?
Thanks for any hints you can pass along!
So sorry about your sinusitis but so glad that you're oligo --- keep the faith!!
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Hi a Chirps
Great to hear from you.
This is my understanding. The presence of cancer in the body can affect the blood and cause clots to occur in the body ( DVT)
In my case, CT scans show that the parasternal mass is compressing the vein in my chest ( great vessels) in turn that caused a small DVT in the int jug vein in neck. So there is a difference between DVT being caused by compression and by the blood being affected systemically in the body where a DVT could spring up in perhaps leg, ie not close to mass. This is why I've had a wobble today because I had not realise the proximity of the mass to the vein.
The good news is that I appear to be oligomet with little evidence of a systemic issue yet although that is impossible to say. However the DVT doctor says that impingement has caused the DVT. I am very very low risk for PE and even if it did happen, the clot is too small to be life threatening. My fear though is the impact on vital structures.
The Dr tries to establish cause primarily and from the scan he said impingement was clearly the cause because an upper extremity DVT is very rare with no other causal factors eg I did not have a pic line for chemo in 2011.
This is just my take on what he said. Clearly I'm praying THP will melt this sucker!! My BC nurse said they are hopeful and went as far as to say that it is more rare to NOT work.
Ladies, I am having a small glass of wine as I feel I've earned it. I keep having wobbles on here- sorry guys.
Chirps- pm me if you want to or ask more questions. I'm no expert though.
Thinking of you and hope you get answers my friend x
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Clots in veins ( DVT just mean deep venous thrombosis) can be caused by a number of factors that disturb flow in tubes ( vessels)
1. Wall of vein related - mass pressure ( increased resistance by constriction/pressure or changes shape ( varicose ties in veins - you see it in lower limbs with superficial thrombophlebitis) leading to increased turbulence of flow
2. Changes in the blood components that lead to increased viscosity
- dehydration prolonged and severe
- inflammation of any cause
- cancer - chronic inflammation picture leading to a prothrombotic state
- drugs - tamoxifen being one of them
- hereditary factors Protein C deficiency ( ideally a hematologist should manage any thrombotic event in a cancer patient and my opinion is that hereditary factors should be excluded - it's just involves a blood test)
You do not have to have metastatic disease to be prothrombotic from a cancer of any type.
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Liz
The internal jugular vein runs from base of skull to frost rib (under the clavicle). It runs in the neck not chest.
It merges with the subclavian ( drains arm ) to form brachiocephalic - they join to from the superior vena cava ( enters heart, specifically the right atrium)
Personally I think it is bizarre to say it is impingement on major veins with nothing else contributing.
It is true upper arm DVT are rare and often caused by infection/ tumour/ pick line combos.
Is your DVT doctor a hematologist or one of the hematology unit resident/registrar?
My money would be on a multi factorial pathogenesis ( more crazy talk but it just means multiple contributing factors). I would not fixate on the vein pressure thing - if it was a HUGE issue your Prof J would have discussed it with you 😉
Please don't think for a moment that I am diminishing the fact that you have a 3 cm lesion close to tiger country.
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Finally ( I can go on a bit sometimes....) hydrate - one of the problems with alcohol is the dehydration - yes enjoy your one glass of red wine ( I am being mean but you are on antibiotics too)but drink lots of water with it!
Claire, 😊
I do anaesthetics so spend my time in theatre,the specialties are so specific these days I know very little (aka zero) about oncology but bring your questions and will all fumble through it together.
My grandmother had a farm too - no turkeys though but certainly lots of chicks, ducks, pork, cows, horses etc. I have such fond memories of my time on the land.🐣
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Hi
As you can see my understanding is based upon what I was told yesterday. I didn't investigate this Dr Whiteside's credentials. The appointment was listed as General Medicine but he had the CT image on his screen. There is an element of fatigue here on my part- I haven't even considered the clot aspect of all this for some time now.
I feel frustrated today that I have now seen 4 oncologists and not one has actually mentioned the link between the mass and the clot to me. Or at least not in the direct causal way. It was discussed as an early red flag, rare location and a Tamoxifen were talked about.
Even yesterday, Whiteside was piecing it together as he went along. Started by saying the UE DVT was very rare so I'm confused about what caused it.
London prof did have the original CT and didn't mention it.
Last night I rang York BC nurse who is excellent and discussed. She said my current onco was aware of it. She gave me the impression that they are very hopeful that a) THP will work ( whether that means melt I don't know) b) I'm oligometastatic.
But the fly in the ointment is the position and feels like another fairground pop up. Can you understand my frustration at the way I seem to be stumbling on things. All I know is that the impingement thing was fresh, scary news to me.
Fine line between balancing the anxiety of a patient and direct reporting of the facts?
The wine will be kept at bay. I had a small amount last night but felt too churned up to really enjoy.
Going to ask again about adding hormone tx concurrently. Surely I have to give this mass all forms of attack if it's threatening this vessel?
All advice and explanations much appreciated.
Chirps- hope I haven't misled you. I was only repeating my limited understanding of all this.
Liz
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I am sorry Liz.
I don't think I helped.
All I was trying to say was for you not to focus on this mass compression thing - it is a combination of position, having a recurrence and being on Tamoxifen that lead to the clot - and not necessarily in that order.
The BC nurse was in my opinion spot on - one lesion documented, high grade so you will get a great chemo response.
Wishing you a restful day!!
😊
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Ioana,
You have always helped. Please don't think the opposite. I put this down to seeing many medics and the language used, transfer of CT scans etc.
The anxiety I have is for multiple reasons and as much as I try I am struggling. I am countering this with trying to focus on what I see as many positives. The grade of tumour isn't known this time but if it is 3 then I should have a good chemo response.
I have tried following threads which discuss response but some go off track, just as this thread has and of course everyone is different.
Yesterday perhaps was one medical appointments too far and I can now focus any last minute issues on the pre assessment meeting next Wed.
I want you and everyone on this forum to know that I could not have got through this without the information, love and support I have experienced on this forum.
The BC nurse will call me this aft and I hope to just ask for any reassurance she can give me. Eg amoxicillin and how long to know if it's working.
I love u all dearly my virtual friends x
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Liz - I would throw the kitchen sink at this now; THP is powerful combo and after it knocks out and/or reduces the met you will be in a good position to try Ibrance next. I had a long rung on it and it killed my sternum and single lung met. Had I not been allergic to taxol, we would have started there and then on to Ibrance as I am ER+/PR+/HER- and cancer grade was 3 which responds best to chemo, not surgery per my UCLA onc. Your RN said its rare not to respond, I agree. Are you starting next week after the sinus infection ends? Standing with you here in sunny LA where I picked some lovely roses this morning. Here is a pic of my new kitten. His name is Mr. Tiny. (()) Claire
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Claire- Mr Tiny is adorable! Thank you for lifting my spirits. My family have all arrived home now. When I am alone, I struggle. My BC nurse called and gave me some comfort. Like you she mentioned other treatments down the line. Sinus issue a concern. I'm on Amoxicillin and periodically inhaling steam with a decongestant called Albas oil in the water. I hope it won't delay treatment next Thursday.
Your garden sounds beautiful and you have the sunshine. It is shining here now- all the way from sunny LA
L x
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JackBoo, Not to worry! I'm forever trying to "make more sense" of things.
And I thank WildPlaces for sharing thoughts!
After more reading I totally agree with WildPlaces about such clots (for examples yours & mine) being most likely "multifactorial" in origin … and while there may be something to be learned by piecing the clues together, what we're looking at here is the opportunity afforded to us by having the knowledge that we do. There's a clot. We're taking steps to reduce it and to reduce risk of further clots as appropriate. I think this insight is something we can put to good use: from here forward we're mindful to actively take this condition/risk into account and will therefore be less likely to have dangerous clot-related complications. Hydration, medication, knowing symptoms to watch for, etc.
Raising my refreshing cucumber-infused water in a toast to melting away the cancers---cheers!!
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I Love Mr Tiny!! May he bring much joy!!!😊🌼( wicked sense of humour - love it😀)
Healing thoughts for your sinuses Liz
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Chirps, thanks for posting. I hope I didn't upset/confuse you in any way. I was just trying to repeat what my Dr said at a time. I do believe in multiple reasons and his comments about compression have certainly not helped.
I have remembered that he said that the risk of PE from upper extremities DVT is lower and that I will switch to 2 tablets a day after chemo. At the moment I am on Dalteparin injections each day and my tummy is bruised!
I wonder where you are at with your treatment and what impact the DVT has had?
Ioana, thanks for helping out here. As time goes on I think my capacity for understanding anything is limited.
Happy weekend to all my friends.
L x
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Liz,
We've got your back - and you know I am not afraid of words, nor travel - what will Di make of it??😝
Enjoy your dinner!
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Just watching the runners in The London Marathon. Beautiful sunny day and lots of people running for cancer charities. Some inspirational stories. The capital is shining! ☀️☀️☀️☀️
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hi, liz. II'm just chipping in because I'm on this side of the pond and watching the marathon too! I'm following your posts with interest and hope. Take care x
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Liz I'm in your pocket and your always in my thoughts and prayers..hugs
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Hello Grainee
Thanks for checking in. 🇬🇧🇬🇧🇬🇧
Di- and I'm willing you on too. I think of you everyday, hoping your pain is easing.
I'm very scared ladies. Need to summon some bravery for chemo. Horrible for my hubby too so must do my best.
X
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Oh Liz - we are with you. Look deeper in your pocket. See my blue eyes smiling back at you? You are not alone, and we will get through the THP together.
(()) gentle hugs from a still sunny CA day.
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Hey JackBoo! please, don't worry about my mindset wrt the DVT/PE/etc. Everything's good! And did you know, you are the one who made sure I got some tx for my clot, and for that I'm forever grateful to you!
I do "Lovenox" shot in belly, yep the bruises! I don't know if pills are in my future or just these shots. I had to "go off shots" when they placed my port but otherwise the whole DVT is seeming like a non-event. I hope it stays that way.
Apr 7, I had first chemo, Doxil. It'll be every 4 weeks. I go for a Second Opinion early next week, then second chemo on Fri.
Yes, so much apprehension before the first chemo!! ARGH!! Drink lots of water. And then drink some more. It will help. But between now and then try to enjoy some time dwelling on other things.
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Liz,
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Beautiful image Ioana- thank you. I am keen to get started now. Been a very long wait. I can do no more.
Hope you had an enjoyable weekend.
Liz
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Liz,
You have done an incredible amount of work!
We are all here - enjoy your family and stay strong.
Hmm..w/end - came across some chicks...
I told my son we had to be careful with our budget, but ...they were given away free at our newspaper agency (Easter project ?).
We now have 4 chicks to take care of, box top of white leather couch next a 1930s Ronisch piano.. looking for a chicken coop?? - mercifully big back yard and mild weather.
Did I say animals are good for you??😊🐣🐓🐔....
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I'm thinking beloved son could make a chicken coop. My Jack would make you one Ioana. He had set a wood making workshop up in his grandfather's garage and is currently making me a bookcase. I suggested a career in carpentry but he says it doesn't pay well enough. Wants to buy a rolls Royce car in the future!!! ah the dreams of our younger generation.
My sister has a new puppy and has promised to bring her to me.
I have made a sanctuary of my bedroom with a box for my meds, fluffy white towels and a new pillow. I figure I may as well be comfortable!
Have been shopping for green tea, turmeric and lots of other nutritional goodies like Kale and just hope o can eat. Going to really try to feed my body.
Liz
P.S enjoy those chicks!
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have you got a nutribullet Liz? Juicing got me through my first lot of chemo. Sxxx
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love bookcases - 😊
all nurturing - fluffy towels, pillow, and well chosen food
(I use my NutriBullet lots)
PS - it's physics isn't it ? 😊 I bet he is brilliant too!!
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Claire,
How are you?? When do you switch to Afinitor?
I can imagine Mr Tiny providing smiles and mischief.
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Liz - love the fluffy pillow and making the best nest for you. You deserve some time to take care of yourself now. Mr. Tiny has jumped and scratched his way into my bed and danced on my head this morning.
I start Afinitor May 10th.(()) Claire in overcast LA
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