Fall Rads 2014

PontiacPeggy

Thanks, OneLump.  No, I don't have any help at all.  Thankfully, my sons came when I had my surgery and took care of hubby.  It's nice to be proactive and kill the beast we had!

ncollett

Peggy I am sorry your husband is having  a hard time. I thought it was odd that this nurse was mentioning a port to me for blood draws.  Do you get a lot of blood draws in Radiation?

Thank you One Lump. Today hasnt been much better. I am very very tired, fatigued, hurting, nauseated and still having small seizures. This one is just kicking my butt for some reason and it was just a re-excision. I will get through it though.

PontiacPeggy

Oh, Nancy, so sorry you're still having seizures.  That sucks  Do you have medication?  Does it actually help?

I had a blood draw last week after my first or second rad tx.  Probably will have one at the end, not sure about in between.  But I sure wouldn't want a port just for that!  Seems like overkill.  Even if they do draw once a week, I don't think I'd want a port.  It's perfect for chemo, of course.  Why would the nurse think you need one?

Psalm34-4

nancy.. do you have a seizure disorder? If not, what is causing them, and if so... have you been taking your seizure meds as prescribed? I dont think you would get a port for blood draw only, they are designed for long term IV therapy needs, and there is risk of clotting with blood draws.. can be used, but have to be flushed very well to maintain, and still clots can happen. I would be very suprised if a surgeon was willing to put one in just for labs. Hope you feel better quick, try to drink water and stay hydrated..

clarrn

Where I worked we always used ports for blood draws with no issues. As long as they are flushing properly and locking with heparin you are fine.   In 8 years I saw many a clogged PICC but never a clogged port.  

HomeMom

Wow ncollett, so sorry you're having such a hard time. Did they say why you would be experiencing seizures? 

I don't know why you would need a port for Radiation. I had it for Chemo and they did take blood out of there too, which was very conveient and kept my vein from being over poked as I like to say! 

Puffin2014

One chemo left, next week. Got my call from radiology today, I'll meet with RO and have my CT scan Oct. 6. Nurse said it takes them about 5 days to develop the radiation plan, so expect I'll start my rads Oct 13, which is OK since my birthday is Oct 12.

PontiacPeggy

Moving forward is always good, Puffin!  Bet it will be a relief to be done with chemo.  Congrats!

clarrn

One more Puffin!    Very exciting!   

Psalm34-4

Wonderful news Puffin... very happy for you and your progress.

Blownaway

Puffin - How many infusions have you had? When I showed up for my last (4th) infusion, the onco said my lab results were so good, he decided I should do two more! Im glad that I have a strong healthy body but that was not what I wanted to hear because I was ready to celebrate! The 4th chemo really knocked me down around the 7-10 day mark. I'm picking back up now and having some trouble with my feet being burned but I'm sure by Sept 25 I'll be getting my 5th infusion. I could have refused but since he was recommending it, I thought if my cancer comes back, I could only blame myself. So no celebrating for me yet. 

PontiacPeggy

Blownaway, that must have been hard to hear.  Stay strong and know that you are really killing that cancer!

Puffin2014

Blownaway: I've had 3 chemo, this will be my 4th one next week. Saw my oncologist this week for my head sores and a red port incision. She wrote the order for radiology to contact me and set up the overview appt and CT scan, so doesn't sound like she's planning on adding any more chemo sessions.

MomMom

At my MO's office they will not use a port for regular blood draws.  Only the oncology nurses who give chemo infusions are certified to access the port.

My RO does not do blood draws and, in our area anyway (DC/Northern VA), she said it became "out of fashion" years ago, as there is no need for it since radiation does not affect your cell count as is the case with chemo.  I've never heard of anyone needing a port for radiation only. 

Puffin, congratulations on starting rads soon!  One step closer to being done with treatment!

ncollett

Psalm I do have stress induced seizures due to my auto accident two years ago. I am on Ativan PRN and Topamax BID which I do take faithfully I usually have a seizure after surgery but not that bad. I had a small one yesterday and have had a few today too just keep taking my Ativan as needed. If they dont stop I will go to Neurologist.

jhodro

Hello all! I've had a crazy week so trying to catch up. I reached the half way point today, rad #17. Yippee!! I am pretty red and sensitive, but it's not horrible - way better than the end of chemo, I'd say. I use the gel pack regularly and put a soft t-shirt 'slice' under the seams of my bra. I had my first bloodwork drawn this week, I'm on the low side which accounts for my nagging desire to nap every afternoon around 2 or 3. Today, the computer went down mid-treatment, fortunately for me they were able to bring it back up and finish mine, but unfortunately for the ladies after me, they had to wait for someone to come and see what was going on. Something about the water that's used for cooling the machine. But, happy Friday. I hope everyone is feeling decent and get some r&r this weekend. 

Peggy, I wish it was easier for you too. My MIL has Parkinson's, but she is a wee little thing, barely weighs 90 pounds at this point so my FIL can help her around easily; and they are in Canada, so she is able to have a nurse come 4 times a week and they also have a benefit that allows a cleaning person to come once a week. It's a really rough disease (I guess they all are, though really). Best of luck to you. 

PontiacPeggy

Thanks for the good thoughts, Jhodro.  Be nice to have help come in even a couple times a week (maybe I could NAP!!!).  DH goes in for surgery Monday (cancerous tumor on his kidney) and he will be in the hospital several days.  Plus I'm almost certain a couple weeks in a rehab facility.  That will give me a chance to sleep and recuperate while doing my rads and sleep some more.  But I do worry about how he will likely decline by just being in the hospital.  It IS all rotten.

Lolis197138

Hi All,

I had my simulation on Sept. 10. Yesterday I got a call back and I have to go back for another CT and this time will be using Active Breathing Coordinator as my heart it's close to the area that will be irradiated. Is anyone going through ABC? How did you find it?

Hope the side effects are minimal for you ladies

PontiacPeggy

Lolis, they tested me for ABC at my simulation and apparently it didn't make any difference - I didn't have any trouble holding my breath for it so that wasn't the issue.  I don't think you'll find it a problem if they decide you should do it.  Just a pain in the you-know-what.

maryland

Hi all, I went for my simulation last week. Got the call from my RO yesterday that I will need the VMAT machine and the ABC breathing. They say it's required in 1% of the population and just my luck, I' in the 1%. They set me up to go downtown to the main campus at Case Western in Cleveland. It's over an hour drive for me and the place I was going to go is about 15 minutes so I was disappointed to say the least. Well, Case Western is not in my network but no one else has the machine. Medical Mutual saying I'll have to pay the $5500 out of network deductible. Arrgghh... so frustrating. So they canceled my appt for today, if they can't get Med Mut to wave the deductible I may have to switch from University Hospital to Cleveland Clinic which means finding a new RO and transferring all my medical records... what a pain! In the meantime the cancer just hanging out in here, 5 weeks since surgery and my path at that time said chemo was "ineffective" and 10/11 nodes were positive. So I've been trying to wrap my brain around 4 months of chemo for nothing and hoping rads and AI's will get this damn cancer and now having trouble getting started on that. I just want to get done with this, I'm so sick of it. Sorry to be so whiney... it just seems I keep getting curve balls thrown at me. Just needing to vent.

PontiacPeggy

Oh boy, Genny5775, you've really gotten socked with terrible news.  You'd think that MedMut would cover your rads.  Does Cleveland Clinic have the right machine?  Are they in your network?  Finding a new RO etc sounds depressing.  Can your nurse navigator at University Hospital help you out?  And then to find out that the chemo was all for nothing - I can't imagine how you feel except maybe PO'd.  Too many curve balls.  do they do "margins" when you have a mastectomy?  If so, were yours clear?  

I don't blame you one bit for venting and you know we totally get how you feel.  

HUGS HUGS HUGS

maryland

My margin was 1 mm, not quite what I hoped for and the cancer in my breast was still active as well. Cleveland Clinic is in my network, and yes they have the machine, and it's only 30 minutes away. I do love my RO but I'm not willing to pay that much money, we could take a vacation on that. I think everyone at UH is trying hard, they really don't want me taking my business to the competition. It's weird all of UH Seidman Cancer Center is in my network except the main campus. It is very close to CC main campus and apparently CC keeps blocking Med Mut from accepting Case Western... politics! So frustrating, thanks for listening Pegg.

Psalm34-4

Nancy, glad to know you are on routine meds, and hope this is improving day by day as you recuperate from the stress of surgery 7 seizures.. Get plenty of sleep!

genny, I feel for you... you just be assertive with you insurance co.  As a nurse, much less cancer patient, it frustrates me beyond words that insurance companies, not doctor, can dictate our treatment. And what our government has done only makes all this worse... Praying things work out for the best for you treatment wise and financially..

PontiacPeggy

Genny5775, you must feel like you are hitting your head against a wall repeatedly.  I'd probably be drinking  You want to get well, not have all these idtiotic roadblocks placed in your way.  Don't know what to tell you except HUGS HUGS and more HUGS!

MomMom

Genny,  My heart goes out to you.  May you soon get the insurance issue resolved and be able to start rads!  You vent all you want.  Huge hugs to you.

Paula

ncollett

Thanks Psalm I am a little better today, so far no seizures just cant keep my eyes open. I went for a walk around the mall with my DH and couldnt wait to get home. As soon as I did which was around 1230p I slept until 530p No I have been up for a couple of hours I am tired again. This is frustrating me because all I have done for the last 3 days now is sleep and stay in bed which is not me. Ill be glad when I am back to myself. 

PontiacPeggy

Nancy, your body is sending a message:  Sleep!  You must need it.  Don't fight it.  I'm sure it is frustrating for you but go with the flow.  You'll be back to yourself very soon!  HUGS!

Psalm34-4

Nancy you need rest, esp after seizure episode.. Listen to your body.. Seriously.. could be a lot worse things than sleeping, lol.. 

Eat healthy, drink plenty of water and juice, and sleep away~~

ncollett

Thanks everyone for the support I just cant believe that this re-excision had taken this much out of me when it was supposed to be the easiest procedure yet. I guess I forget I have other issues. And you are right it wont hurt me to rest I just am not used to it and then wonder how much rest I need. Lol I have slept all day off and on and except for a little bit here and there I am still very tiered.  Love you ladies and hope you all are doing ok

sueshen50

Hi All,...

I just love this site....it has gotten my through all the ups and downs of my path in life right now. I am curious about something. I just started radiation yesterday ( yes on Sunday--2 treatments so far) and I am sooo fatigued and I just started. Should I be concerned? when I went through chemo, I always had the most obscure side affects....

Any others like me?

Sue