Forum Replies Created
Marion….made MINE too. )))). I feel like I’m a balloon in which someone stuck a pin…..I just need to collapse and sleep tonight. Unpacking can wait until tomorrow.
Positivity….yes…..you are absolutely right….caregivers who truly care, go through the same experiences and emotions as the patients. My husband is my number one cheerleader….and I worry about him…..how the stress is affecting him too. We’ve been married for 42 years…as of this 5th of July and he is the love of my life.
We are home now from Mayo….two minutes in the house, and I had to post on here before another minute gets away from me.
The scans today went well and the resullt was NO SIGN OF CANCER. The slightly enlarged lymph node and tiny lung nodules that were “concerning” three months ago are unchanged and of no concern right now.
Blood counts were good (for me). For the first time in about two years, all three major counts, white, and red blood cells and platelets were within normal limits at the same time. My hemoglobin was 11.9 a month ago and has now gone to 12. 2. !!!!!!!!!!!
Thank you for being here for me. Last night was a rough night….up until 4 a.m before I was finally able to go to sleep…and then up at 6 a.m to get ready to go to the clinic. I’m tired….but as you can imagine…feeling good.
Love you all,
Darla….I feel like I’ve been doing the “strong” thing for so long at this point……as I know it has been my only choice….giving up certainly isn’t. But….all the same…here i am ….not after 1 a.m and I can’t settle down to go to sleep here in the hotel room. The only redeeming thing about this is that my husband is peacefully sleeping nearby. I had a rough time when he went to bed…..shed a few tears…..but otherwise I’m trying to keep myself busy looking at some of my old genealogy land records research. You can’t read that old handwriting and think of much of anything else. LOL. I will probably give up in another hour and try to sleep a little before we have to get up at 6 a.m. You’re right though…one day at a time. I’ve made it past Thursday….and Friday is here. Julie
Darla…..yup….I am making myself “busy”. Busy, busy, busy! Today, I worked on cleaning out a cabinet and my countertop, then I had the 5 year old grandson here to play with me for a couple hours. After that…out for a pizza date with my husband and then sitting and staring at the empty cupboard, trying to figure out how to arrange all my medical, insurance, provider and tax files. The grandson was the highlight of my day, of course, but it felt good to get some stuff cleaned out….and in the process, I didn’t think about the CC very much. Tonight though, I’m actually sort of shakey, thinking about the next couple days. I always thought of myself as one pretty tough broad, but this CC has made me a bit more humble. And…..what I seem to forget during times like this, “When the going gets tough, the tough pray.”
Thank you everyone for your encouraging words and thoughts. I’m “trying”.
Spokanemom…..thank you….I have to remind myself to be kind to myself. It’s just very hard to deal with the one cancer, let alone the two…and to know that if one comes back, the second one will make treatment very limited and difficult and when the other comes back, all I’ll have is a hail Mary and likely very short time left.
Catherine….at Mayo (Rochester) I usually have my blood work early in the morning, and that is followed by an MRI and CT scan. Then about 3 p.m the same day, I meet with an oncologist for the results. Occasionally, the situation is that they can’t get it all scheduled in one day and I have to meet with the oncologist on day two for results, but no phone calls…no waiting around for days or a week for results up there.
Gavin…..I will fix a “cuppa” and imagine you are here.
Darla….you aren’t far from us here in Iowa…so our weather is pretty much your weather…..and it’s been pretty dismal all of April here too. . That doesn’t help a lot.
Marion….thank you…I’ve have Foundation One testing done….and at present there doesn’t seem to be any drugs for my mutations, except one in a trial when the testing was done last fall. Any trials I do must take into consideration that the trial drug can’t affect the bone marrow because it was chemo that caused the MDS and would likely drop me out of remission from the MDS. I have thought….what if they did Keytruda or other similar drug, say for a CC recurrence …to have it work….or even not work on the CC, but it fixed the MDS instead? So much has changed in the three years since my diagnosis in 2014….but with that MDS wrinkle, the scans are especially worrisome.
I just posted something on Facebook tonight…..and it ended with something like , “Anxiety never changed what is going to happen.” Now, to convince my head of that right now.
Love you guys,
Beautiful poem, Shelley….says it all for all of us.
JulieMay 2, 2017 at 1:42 am in reply to: Allergy to Adhesives…..in need of bandaging idea for port #94653
Thanks Karen and Lourdes…..I am going to go to my regular computer and printer and print this info off so I can read it better and take with me to the next infusion.
I will report back about all of this if I find something that works. I cringe at the thought of having to have the port accessed every day for 5 days in a row, so I hope we can come up with a good answer to this for me and hopefully many others. My current oncologist/chemo center said that they have two of us right now who are severely allergic to the adhesives on almost everything. Since I am going to be getting the VIDAZA infusions for “the rest of my life” (Mayo hematologist) , whether it is for 3 months or 3 years…..we have to come up with something that works. And…if it works for me….hopefully it will work for others.
Hi…..I’m 3 + years out from my diagnosis and first surgery with two recurrences in that time. At the time of my diagnosis, my CA 19-19 was totally normal with a 5 cm tumor in my liver. There’s a percentage of the popularion for whom the test doesn’t work due to some genetic issue. I’m one of them. No CA 19-9 tests have been done on me since then until recently when I changed oncologists. The reason for now tests was that if it didn’t show it in the beginning, it wasn’t likely to show it if there was a recurrence. The new oncologist did not apparently look at my first blood tests to see that it diidn’t indicate a problem, so when I go back for 3 month scans later this week, I’m sure he’ll have run the CA 19-9 again, and I will tell him this time. There’s no point in wasting money and resources for something that won’t show anything.
If your CA 19-9 was elevated originally, I would think though that the doc should have been tracking it along with CT scans from the beginning to now.
JulieMay 1, 2017 at 8:44 pm in reply to: Allergy to Adhesives…..in need of bandaging idea for port #94650
Thank you everyone for the help. I start the Vidaza 5 days of infusions again next Monday (one week from now) and will take some of the ideas with me.
Gavin, Yes….the Cavilon is something we have tried. It isn’t 100% perfect, but it did help. The problem came last month/round when the nurse FORGOT to use the Cavilon on the first days of the 5 days of infusions. The next day….BLISTERS!!! I am just now to the point that the skin has healed almost….but it is still red and one scar the nurse said looked like I’d had open heart surgery. . Once the blisters had started…..they didn’t have anything they could put on the skin over the areas of the blisters….and thus…major issues.
So, I am hoping that when I go back next week…and it is remembered to put Cavalon on before the bandage dressing to protect the port overnight…..I won’t deal with the blisters again this time. If they raise up again, we’ll probably have to de-access the port every night and re-access each morning of the 5 days. .
Lainy, my dear friend …..as much as I hate CC…..without that diagnosis, I would never have met you and become the best of friends. So, at least something good has come from having CC. You have listened to my fears in the middle of the night through our emails and given me hope. I love you with all my heart. You will be missed on the boards, but I know that God has other plans for you and you will touch the lives of others as you have here.
You “sis”, JulieMarch 30, 2017 at 1:24 am in reply to: Platelets, Immunotherapy may reduce tumor regrowth #94339
WOW……this is really a good read. It’s in it’s infancy, but it looks like some neat potential here.March 28, 2017 at 2:21 am in reply to: Dichotomy in intrahepatic cholangiocarcinomas based on histologic simi #94500
Than ks. Gavin. That was esp interesting to me as I had periferal intrahepatic CC.
Thanks Marion, I thought I remembered something about lung surgeries, but I wasn’t sure, so glad I put that question out there to you. Just to clarify…..when you say “wedge surgeries” are you talking about wedge surgeries of the liver or lungs?
Sigh…..I am one of those “realistic” people like Rich. It did get better, but took a while. I believe that once Rich feels like there’s a plan he can did his heels into, he will feel more like fighting. Right now, this is all so new and he is facing his mortaity sooner than he ever thought he would. It might help him esp to meet with someone who has felt as he does right now. Another reason for us to meet?
My husband (name is Allen….though I call him Tup): He did not know the nodule was there….was found by accident. The ENT doc said it didn’t “look like anything”, but then said, “but I could be wrong.” So yes, it is suspicious and we’ll be waiting for the pathology on pins and needles. Tup is trying to stay calm, but I know he is stressed over it.
Are Rich’s stomach problems more the nausea feelings, or heartburn type problems….or both?
Same here with the snow and cold. We had such a nice bit of warm weather in February so it’s really hard to have to deal with this current weather. The good thing about it is that it won’t last for long and we’ll be mowing grass and watering flowers. I’m ready for some nice sunshine and good, old fashioned thunderstorms.
Dear Tim and Julie……I am so sorry for the loss of your son. I am the mom of one son and I can’t imagine losing him. I know as parents, we’d rather it was us than them, but we don’t get those choices. I hope sweet memories will give you comfort and peace. Please know that we share your loss.