I thought the blood clots go when you are on blood thinners. That is what I was told. I’m on them for 3 months. Not sure if in your lungs. Your onc should give you more info. Mine has been fantastic stepping in when my iv antib’s were making my neuts were low. A doctor had reviewed them but thought I was on Immunotherapy so this was normal to also have low HB. Iam only on Phesgo now which is targeted treatment!
Can you call and try to get an earlier appointment? I hope you feel better soon. It’s all very scary isn’t it. I’m on antib’s for 4 weeks as got sepsis due to the Picc line.x
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Omg, that sounds just horrendous @janie3 I’m so sorry youre having such a tough time and very little support. Have you rung the macmillan nurses line for advice? Ive always found them really lovely and helpful. I hope you feel better soon and get some answers. 
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I had a temp of 38.8 so I was worried about sepsis, we’re so vulnerable.
I’ve got clots in both lungs and they say it could take anything up to a year to clear them.
I was having injections into my stomach twice a day for a week while in hospital but on tablets now I’m home.
To make matters worse, they gave me a Filgrastim injection while I was in hospital and I didn’t realise until the next day when I felt so much worse and my chest hurt and I asked about this injection that the nurse said was to ‘help with my white blood cells’.
I refused it the second time they tried to inject me when this nurse told me it was Filgrastim and they sent for the Oncologist who asked why I’d refused my medication. I told him to check my notes, he came back and confirmed that I’d been taken off them because of a reaction. They didn’t say anything else to me.
It’s made me feel very vulnerable and alone and not listened to.
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So sorry @janie3 how horrendous. And cheeky onco not seeing you because of flu…they could schedule something for a few days time.
Anyway. Just wanted to send support and hope you start to feel better soon. Hope you can get some rest in your own bed. Id actually be writing down my list of questions for your phone appointment. My head goes to mush whenever I have to see or speak to a specialist x
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@janie3 that all sounds so scary. I hope you are starting to feel better now. At least your hospital were super good at looking after you. How many more cycles have you got? Wishing you a speedy recovery and sending you a big hug xxx
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I’m still on injections for blood thinners. My temperature was 40 in 1 ear and 39 in the other. It dropped when got to hospital (was snowing) and then went up to 38 which it was in the am. They were going to send me home until my temperature went up again. I said I thought it best as I was shivery. The onc said he wouldn’t have let me be sent home. The next day I was told they had grown something in my blood so they tried different antib’s on it to see which worked best. Then my infection markers went up again so they said 4 weeks on iv antib’s. Then on Thursday that changed.
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I’ve got 2 more cycles left but thinking about stopping. I need to discuss it all with the oncologist when I can get a face to face appt. I don’t think it’s something I can discuss properly on the phone.
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Gosh @janie3 youve been through it, I’m glad to hear you are back home now though & I hope you can get stronger and stronger. Angry for you about the Filgastrim too, that’s really bad of them. Speaking from the perspective of someone whose oncologist is somewhat “hands off” too I can empathise with feeling pretty unsupported & alone, I have talked things through with the various helplines on more than one occasion who have been amazing.
From a blood clot perspective (mine was in my arm not my lung ofc) my experience has been a very hands off approach which i cant get my head round at all, I feel like surely scans and monitoring is vital but they seem to just leave you to it 
- not a partic helpful comment but solidarity!
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You def have to watch what they give you or don’t as the case may be. I set my alarm at midnight to ensure I got my antib’s which were every 6 hours as it didn’t happen 1 night but luckily I woke up at 1.20am.
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Oh @janie3 that sounds so rough for you. I think it’s ridiculous that the oncologist wouldn’t see you face to face due to flu. If I was you I’d be demanding to see a different oncologist or their superior. Medical staff see patients with infectious diseases every single day. It’s a hospital for crying out loud. That’s why they have infection control policies and PPE. I mean, do they seriously just not see people with infections???
I hope you get some answers soon and that your breathing problems settle. It’s a tough decision about proceeding with your final two cycles and definitely needs to be discussed face to face.
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I stopped chemo as my Picc line had to be removed but I asked the onc what he recommended as he left it up to me. He said as I’d had a good response then in my case he recommended stopping. I had had 10 of 12 weekly Paclitaxel. He also said that unless my op results are bad I will stay on Phesgo rather than have 14 cycles of Kadcyla. I’m HER2 and also have hormone receptors so am on Phesgo every 3 weeks still. I am also on Exemestane too as my op won’t be until Jan/Feb.
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I have my 5 out of 6 chemo tomorrow and for the first time my neutrophils are low at 1.2 but team have said as my full blood count is good I can have my chemo.
I am worried how I might feel after chemo this time with my neutrophils so low but so happy to then only have one more left to go.
Then to focus on surgery and Phesgo for the next few months.
Hope you all have a happy Christmas and everyone manages to stay away from hospital xxx
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I have low neutrophils this time too (oncologist said they were 0.3) so she’s stopping my carboplatin for my final (6/6) cycle, which is supposed to be Wednesday, just have to get my platelets above 100 or it’s delayed likely to the new year.
I was really anxious as I feel incredibly drained and weak and exhausted, I’m so relieved she said that.
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@sez 0.3 is low, makes mine look positively high!!
My friend had low platelets both times cycle 5 and 6 delayed her first one and then only a one day delay for her second but reduced her dose by 20%
I guess it’s the cumulative impact of the drugs
Hope you get finished soon xx
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My oncologist said they reckon the carboplatin has done what they needed it to do, hence why I’m so wiped out. They considered reducing it twice but she spoke to her superior and they said to just stop it completely.
When I learned they were so low I wasn’t even slightly surprised. I’m covered in bruises, even more from the transfusion and blood tests required afterwards. My veins are starting to shrink too (good timing, if I get my last chemo this week I’m really going to need that time til Feb for them to recover).
I’m so horrified some of you aren’t having face to face appointments with your oncologists.
I’ve had (and demanded when offered telephone consultations) face to face before every cycle and got them. It’s a three hour round trip but I’d much rather she sees the state of me as well. Apart from a couple of minor errors (and her refusal to push for me to switch from filgrastim to pegfilgrastrim cos she reckons the Trust will refuse anyway) my oncologist is superb. She listens and comes across as genuinely empathetic. I’m so sad everyone isn’t getting the same support.
I hope your treatment goes smoothly tomorrow and you start feeling better swiftly.
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@janie3 sorry to hear what a rough time you are having, as if this wasn’t bad enough without all these complications. I really hope you start to recover soon. Sending love and hugs 
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So sorry to hear about this Janie, you have been through the mill and I hope very much you will be getting some better advice and help. Your Oncologist should review this situation with you and could be worth talking to Breastcancer Now or similar helpline. Thinking of you
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@janie3 How are you doing? X
Hey all, I hope everyone is as well as they can be heading into Christmas and you are all able to relax and enjoy time with loved ones.
I had my penultimate chemo on Tuesday so feeling the effects of that but trying to stay focused on the end in sight for chemo at least before I start planning for my surgery in February
Anyway wanted to check in and wish you all a merry Christmas xx
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Hoping you have minimal to no side effects.
My neutrophils rose to a grand 0.4 so no final chemo for me until after Christmas (they’re telling me the 28th but nothing confirmed). Relieved I get to enjoy Christmas food (I am a pig) but annoyed I still feel so dang weak and my feet won’t stop tingling (it’s not even pain or pins & needles, just feels like they’re on a vibrate setting).
Hope everyone is feeling okay and is somewhat able to wind down this crappy year in a good way with loved ones.
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