Radiation oedema
Hi all, unexpectedly my breast has doubled in size during my first week of radiotherapy. Painful and I'm quite paranoid about how far this is going to go. At my first meeting with the registrar she said it was oedema. She referred me to the hospital therapist who called and said treatment will start in another 3 weeks after treatment is over. Can anyone offer any help with how to manage until then?
Chemo almost over
I have 3 lots of taxol to go. Then I am done with chemo.t I have gone pretty well on taxol. I've had hardly any side effects. I feel sick while it is being infused but fine by the next day. I have no fatigue and am busy zooming around doing lots. I had a horrible rash break out on my face, neck, shoulders, back and chest that looks like acne. I hate it as I already feel self conscious of my appearance. I haven't heard of anyone else mentioning a reaction like this. So I've been put on a cortisone cream 3x day and will start antibiotics for it too. The pins and needles have started but it's mild. Onc said if it is present the whole time she will reduce or possibly cease the chemo. She also said it could get worse after chemo so she will be monitoring it closely. I have ditched the headwear now. It is just too hot but I have so much hair. It only came out after the first 2 rounds of AC after that it just stopped growing. But since I've been on the taxol it's growing very fast. I've even had my a haircut! Well a trim of the wispy bits is all. Lymphoedema has started. Off to physio for that tomorrow. It hasn't swollen very much put I have pain in my arm, which is what caused me to get it checked out. I have a lump in the crook of my arm where the fluid is sitting. Also have had my initial appointment with the radiologist. Will be having 25 radiations to the breast and lymph nodes. Then an extra 8 boosts to the tumour site. The radiation to the nodes was optional but I choose to have it as the dr showed me a research report with some stats. What caught my eye is was that the difference with the node radiation vs without gave an extra 5.4% chance of it not recurring as a distant metastases. That was enough for me. Both my surgeon and onc said the chances of it recurring in my breasts in minuscule as it will most likely recurr in my lungs or brain. So comforting! In light of that I have asked abt follow up after treatment. I will see onc abt 3 months after radiation. She wants everything to settle and then will start testing. She will order a ct only and blood test checking 4 types of cancer markers. I have asked for the blood tests to be frequent ( I was going for fortnightly) but she said every 2-3 months is enough. My surgeon said the tests can be unreliable but argument is is you build a large pool of data you would notice what is "normal" for a particular patient. But she said something like it would take a lot of growth to show an equivalent change in the markers. Still pondering all this. Work is going well. I have increased from a half to a full day each week. I love it. Love my little munchkins and excited to be a professional person again not just a patient. Loving summer and am trying really hard to be sun safe. My life revolves around the beach and swimming pools. Lucky the radiologist told me having a swim in the salt water will be good for my skin! There's my silver lining. Thinking of you all. I hope for all the bad moments there are tons of wonderful loving special ones to heal your spirit.
Recurring extensive blood clots
Hi everyone, I am really desperate for some advice. I have been in hospital a total of 3.5 weeks in the last 5 weeks with cellulitis of the right Lymphoedema arm. But only a weekish of being out of hospital I was admitted again as my lymphodeama arm was swelling worse then I have ever seen it. Turns out I have a massive blood clot that extends from my neck down across my chest, under my arm and down the inside of my arm to the inside of my elbow! This same thing happened to my left arm which wasn't affected by breast cancer in April 2013, I was at that point put on clexane 100's twice daily and confined to do so for a few months until I did some research that I could be on xarelto... So ever since have been on xarelto 15mg. Anyway this clot in the left arm in April 2013 was quite extensive as well... Infact identical and the veins pertruded straight Away but I got alot of relief with clexane with the swelling right down to my fingertips, earlier, unlike this time... I just am not getting any relief from the swelling and infact my hand and forearm are bigger then they were this morning. So I got this new blood clot confirmed on Monday by an u/s and was increased from 15 to 20mg of xarelto and twice daily injections of clexane 80's. The problem is our family holiday to NZ was booked for Friday ( yesterday ) and my oncologist wanted me to go as in the last month I have been given news of further spread of my cancer and chemo regimes have been changed. So on Thursday my OT lightly wrapped my right lymphodeama blood clot arm to give it a little stability for the plane flight. All was fine on the flight and I was very conscious of moving my arm during the flight. Anyway Friday night I was actually able to pull the bandages off instead of unraveling as I would normally have to do, suggesting I may have lost some swelling, but unfortunately today I don't think so... Infact we measured this morning and tonight and my hand and the middle of my forearm are up 2cm. I think my upper arm is to but because measurements were only done midway and I feel like I have pooling happening more above the inside of the elbow the measurements are not indicative of that! So anyway back to when I was about to have a shower Friday night after taking off the bandages, I am noW seeing my veins pertruding across my chest and the top of my upper arm, all under my arm closer to recon scars and under my boob on my belly. The worst part is on my chest as it's almost like bruising, it's just black and blue! I gathered it may of been from the flight or compression, but the aim of the compression was to maintain the size of the arm in the aim for it not to get any bigger on the flight as we don't want to disturb the clot i un-naturally, we want the clexane to do it's job and dissolve it before it breaks off. So basically I am a little worried about these pertruding veins / bruising as nothing presented up until Friday night after the flight. I had assumed that my arm was so big from lymphodeama that I wasn't going to see these pertruding veins like last time as there were no underlying issues With the other arm when I had a clot last year, unlike this curent arm, as like I said lymphodeama plays a big part in this right arm of mine. Anyway I also am on permanent antibiotics for my holiDay for the bad run of cellulitis I had. The infectious diseases dr was happy to do this for me so I could enjoy my holiday without ending up in Hospital while on holidays in NZ. He said if it keeps it dormant while I am away, then we will deal with it when we get back. So in the last few days I have been coughing and it is getting worse. I am coughing up a lung with yellow / green phlegm. So I am thinking of seeing a GP tomorrow as the antibiotics I am on for the cellulitis obviously isn't covering this chest infection?! My current chemo is CMF and my mets are all in my lymph system in chest and upper sub- clavicle, under my arm from some lymph nodes left behind, also a number of spots in spine, lower back and hip, and also on the outside of my bowel in the lining of the stomach. My oncologist hAz said if I don't respond to this chemo I am in a lot of trouble and had said he is trying to get me to Xmas but it's these chronic and acute conditions I have that run me down! Is there anyone who has problems with extensive blood clots that can shed some light on this, as I want to continue this holiday with my family as it could be my last... And don't want to end up in hospital while over here, and I am afraid that I am so determined about that, that I may be being hasty? Thanks so much everyone. Also I forgot to mention I have TNBC and I was first diagnosed 9th march 2011 and my secondary diagnosis started with a lump high in my chest walk on July 2013 and a fine needle and core biopsy results came back as fat necrosis and fibrosis. This lump back regardless of a mastectomy :( anyway November 2012 I had it checked again an sure enough it was cancer but unfortunately the surgeon couldn't get clear margins this time... We have had the cancer stable at one point but the neuropathy became too hard to bare and ever since we have been trying to find a chemo that will work. My oncologist has said that with where the cancer currently is, I am high alert for my Brain and liver as that is where it typically goes next!
A year on from radiotherapy
I wish to share my journey a year on post radiotherapy. I'm happy to say I've finally turned the corner and am starting to feel much better. I suffered breast lymphoedema and severe inflammation which worsened over the months following radiotherapy. My radiation oncologist said I had an extreme reaction to radiation, with nerve damage which is quiet rare. He mentioned that sometimes after a year or so it decides to get better. It drained my energy and I thought I'd never improve. Well it did get better and my arm feels really good and my energy levels have returned to normal. My breast is still a little inflamed and tender but a big improvement and I'm expecting more. I share this to encourage others who may have extreme reactions to know things do improve, and for some it may take longer than others. I feel so happy that I feel somewhat normal, and that's good enough for me.
Radiation Finished!!
I've now finished my radiation!!! Slightly overcooked, but my skin is holding up well. Could get worse before it gets better, so I'm prepared. I slathered on the sorbelene twice a day & think that this helped. I'm still recovering from the chemo with aching muscles. Hard to know if it's from the chemo or from exercising again. I also have ongoing lymphodema in my left arm & swelling in my feet (cankles). My hair's growing again. My son teased me that it's more salt than pepper, but I won't be dying it anytime soon. I still have herceptin until next January & will be starting on hormontherapy soon. That's the worst of it done & dusted. Yes!! Take care, Wendy
