Anyone getting ready to start Radiation in Fall 2016?
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Kat, I only saw my RO once, before rads, and my follow up will be seeing his nurse.. he was nice, but if you're only going to see someone one time... well, don't plan to be seeing them after the followup
Gonnabepoz, Welcome! losing your appitite is a normal thing.. for me, I never have much of one anyway, and I lost about the same.. got it back again though.. darn... You will do just fine.. like Peggy says, sorry to see you here, but know you are in the right place.. others here can share their experiences too
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I never lost my appetite. I just finished my 15 Tuesday. I saw my both RO and nurse once a week and will have a follow up in a month.
Try eating small meals throughout the day until it comes back and indulge in the smells that make you hungry.
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I suspect that both my BS and MO suffer from social anxiety. They are well respected and I'm lucky to have them on my team but their bedside manner is lacking. I generally end up working with their nurse practitioners. My RO, on the other hand, is very warm and charismatic. When I call his office with a question, he is the one who calls back and he acts as if I'm his only patient and he has all the time in the world. I had the misfortune last week of dealing with one of his colleagues who left me in a room for two hours in just a gown with no head cover or even my glasses so I could read the outdated magazines. I came down with a nasty cold the next day, and, yes, I know that being cold doesn't cause colds but it doesn't help your immune system to fight one off. I found out later that she went to a meeting for an hour while I was waiting in addition to seeing her regular patients. I made a complaint to the hospital and their PR person told me that he would relay my concerns to the department head who is, guess what, my regular RO. I had no idea; he always acts so humble.
Long story short: my RO has a great personality.
Regarding appetite during rads: unfortunately I never lost my appetite. I was so ecstatic at having my taste buds back after chemo that I ate all the things. ALL OF THEM. I'm surprised my form still fit at the end.
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I saw my RO every week and he was just fine. He wasn't a bundle of laughs, but he was friendly, compassionate, and very willing to answer any questions. My appetite was the same as always.
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just finished my first of 33 rads. Since i am prone my guess is that the rads are from the back don't really know since the tech and rads dr haven't answered any of my questions, they have deferred to my radiologist oncologist. Oh well my eyes were shut since I couldnt see anything so it was a bit scary. The hardest was staying still for 40 mins and the tats. It felt like the tech was grinding the ink into my back - oh well it is done. I needed help off the table I was so stiff 😖 But at least tomorrow will be faster.
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Kat....my RO is very nice...I see him each week ...today he even walked me out of that department to the elevator. Almost felt awkward like a first date...as we walked together...lol
GonnaBe.... Welcome .... I sure wish I would lose some weight. I put on some pounds from the steroids I took for chemo and have only lost one stinking pound with radiation.
Miko....woohoo 1 down
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lol Caligirl yahooo is right 👍 Tomorrow won't be as bad . Down the yellow brick road we go tra la tra la
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I'm now 2 weeks past finishing 25 radiation treatments. My skin was fine up to a week past radiation. On day 7 I had a little bit of peeling. By day 10 I had 2 spots that were split open. Now the whole area is a mess of open sores, peeling skin and bleeding areas. It is such a large area it is impossible to dress it properly. Fortunately the new skin underneath is coming through and I am trying hard to keep the area clean to avoid infection. It's not particularly sore anymore like it was the first week after finishing but it is definitely awkward dressing and moving around
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Ladies it's been awhile since I've checked in....CONGRATS TO ALL RECENT RAD GRADS! So happy for you all, whether you rang the bell or not for your final treatment, go into your BC profile and check completed when it comes to radiation & celebrate being a part of the 'healing' category... I see my oncologist on Wednesday about arimidex. Beginning to live life with anew sense of normal. Hugs to you all
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Woke up today, looked down and noticed the skin looked fine but the nipple was flaking with some splitting in the skin/tissue. Every red areas standing out. Cleaned it and covered with gauze.
It not painful more achy.....
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Hi all you beginners of rads 👍 Had number 2 of 33 and it was fast 10 mins and out the door, no symptoms yet and alot less scary. Only 31 more to go OMG
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xxyzed....that sound terrible. I am 13 in out of 30 so I know with a red boob and tender nipple/lymph noid areas I am still in the honeymoon phase. Hope yours continues to clear up well. I can see me trying to work with that going on ...yikes!
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Thx Caligirl55. Definitely inconvenient trying to dress when your chest is a mess. It seems to be healing well enough though. Just not as quick as I want. And the no swimming with broken skin instruction sux when it's gorgeous weather outside. Cancer - the gift that keeps on giving
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Hi all. I'm now 2 weeks past #36 rads. My skin is finally healing nicely and just a little tender. I started blistering with the regular rads but those healed quickly once the boosts started. Then I really reacted to the boosts which they said was unusual. It did seem like it would never get better, but here it is only two weeks later and I"m getting back to normal. IF (and not all do!) you react or have skin issues, just keep using all the creams and it really does get better fairly quickly. Hang in there, we'll all be looking back at all this eventually!
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Glad to hear you are healing Dara.
Given that I see posts like this all the time, I think I will do a separate post in the Radiation forum with all the info about the use of Mepitel film, with links to the supporting technical and medical information. Women shouldn't have to suffer these SE's on top of everything else we have to cope with when dealing with breast cancer!
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Amusing, if I had to do rads again, I definitely would invest in the mepitel. By the time I learned about it, it was kind of late for me. I had bought moisture gel sheets for burns, but they really didn't work. Mepitel really should be covered by insurance.
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Amusing...I think we all don't understand it all when we start radiation so those that use Mepitel need to get the word out. My BS recommend the Lindi skin roll so ordered that. I haven't needed but I'm just going into my rad #14 today...I'm only med rare it this point. I go back to work tomorrow and of course woke up with a backache & for some reason I have had cramps all weekend ...haven't had I period in years!! Not sure if I should call my regular doc or tell RO Thursday
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Cali, knowing what I now know, I'd start using the Lindi skin roll now rather than wait. It seems we react from the inside out and by the time it gets bad, it's almost too late to use it. I believe it's better to be proactive rather than wait for the symptoms. Just a suggestion. I didn't really react until around #18-20. Then it got bad quickly.
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Tomorrow is two weeks post radiation for me as well. My skin never broke down and I only used Aquaphor and Miaderm. I thought for a while that my nipple, where my boosts were focused, was breaking down but it turned out to be excess Miaderm that was not absorbed and started crusting. Let that be a warning to others to make sure you rub it all in. Once I switched to Aquaphor in that area, I was fine.
A lot of studies on hypofractioned radiation (higher but fewer doses of radiation) show that there are less side effects than traditional lower dose radiation. I think that is why my skin held up so well.
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I have my 1 month post rads f/u with RO. I don't expect anything much from the appt except for put on a gown, get a quick look and be on my way. Things are going well except for some tightness in upper outer muscles. Until a few days ago, I was religiously using Aquaphor 2x day. It doesn't seem like such a necessity anymore. Progress
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I had my radiation follow-up appointment last week and I came out of the room really angry. It was a different RO than the one I saw at my planning appointment. He was arrogant and dismissive. He started off by saying "Well you didn't have breast cancer" WTF? I am aware that some schools of thought in the oncology field consider DCIS to be a pre-cancer because it's not invasive (yet), but the fact is mine was Grade 3 with comedonecrosis and as my surgeon said to me after I was first diagnosed "If your mammogram had been next year instead of this year, your prognosis would not have been very good"
So this dick of an RO made me feel like I was a waste of time - he said "there are lots of emotions swirling around all this" the clear inference being that women are overly-emotional and can't think straight. Hello? Of course were f'ing emotional about it! We've been told we have cancerous cells in our breast, been put through many unpleasant procedures (hook-wire insertion, I'm looking at you), in my case 2 surgeries, 5 weeks of radiation where I was away from my family for the weekdays not to mention the sheer terror of being diagnosed.
He said that he thought the followup appointments were a waste of time (I actually agree with him on that point but it's not something he should be dumping on the poor women who are just doing what they've been told). He even pulled out the 'oh I've treated 80-90% of women in this region" - in other words, I know everything and you know nothing. I was just livid when I left the room. I've been thinking up cutting responses ever since, as you do lol
The only useful thing he said to me was to not be alarmed if a lump formed in the scar tissue as this is very common and is virtually never a recurrence, but they would do a biopsy just for reassurance.
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AmusingSoprano - I'd be livid. What a jerk.
My appointment was pretty mild in comparison...exactly like I was expecting. We also talked about the scar tissue and I was told to deeply massage it for at least 6 months to break it up.
I am glad you found yours early too, just as your surgeon indicated.
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Hi all: well I am now 4/33 rad treatments. I am not burned yet, but my psoriasis especially on my treated breast has flared and i have rib pain and my breast is swollen. BUT i have been using faithfully Miaderm L which I just love and started using Miaderm soap. I think it is helping my psoriasis- it has coconut oil, sunflower oil, goat milk water, sodium hydroxide, calendula and oatmeal. I have also been using Burt's Baby Bees dusting powder under my arms which I also love ( no talc) smells nice. Well tomorrow is the first meeting with radiologist since starting rads. Will see what he says about the things i am using and the symptoms that are popping up
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Dara..thanks for the tips .. I had no idea
Miko..glad your doing well.
Amusing...that is just unbelievable to me...so sorry
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I just had my follow up and she said everything looked good, have some fluid, guess that will go away with time.. took about 5 minutes..
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Miko, for the breast psoriasis, I also found that Calendula cream was also very helpful. It's over the counter and I just bought the ointment on Amazon. It's far more greasy than the miaderm L, but especially at night, I just coated the whole breast then wore a very soft t-shirt to bed. I'm experimenting with what I can use now after treatment on my flares. I primarily have it on hands and legs with some on the back of my scalp. Have had to go off all the drugs that finally worked! I've also read that just using cornstarch in lieu of deodorant works well.
Judy, so glad all is good. My skin is almost healed already, just a tiny bit of itching left.
Amusing, that is just terrible! I've had one similar experience to that, and I really think should it ever happen again, I'm just going to excuse myself and leave! No one should have to put up with that after what we've gone through and doctors who believe they're God don't serve patience nor anger! They're just not worth it!
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Tyty Caligirl and Dara: tyty for the words of encouragement and great ideas - oh let me tell you my psoriasis and radiation do not get along
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Skin is holding up well so far with the mepitel. A little pink. taking the bandages off each day is possibly irritating the skin. Sorry you had to deal with such a prick, Amusing soprano. I find the RO's in my center to be annoying. I actually had one say to me that radiation was supposed to be the easy happy part! What a jackass.
I provided my RO with a copy of the study on mepitel bandages and also my rad techs. I talk to them about it every time I go in. I really hope my skin continues to hang in there. The RO I saw this week said it will likely get bad in the last week. Gee thanks!
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ok back from first meeting with radiology oncologist. I really believe that they see tooo many patients and it is just a matter of fact only. The nurse was worse. I told her that my psoriasis was aggravated by rads and she promptly said " oh, it will get much worse". Well, thank you very much for that. I am 5/33 and now i am again scared agIn. I really didn't want to hear what she said and from now i will share carefully with her. Everything I told her she just poo pooed away. Hey whatever 😞 Oh well, at least the tech are nice
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So sorry, Miko. Luckily, my psoriasis is on hands and legs not breasts. Your nurse sounds awful! There's no excuse for that kind of behavior. If it's too "matter of fact " for them they should change specialties!
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