suzannegm
Forum Replies Created
-
Posts
-
Hi Suzan – First, welcome to the site, sorry you had to find us. What good news you share with us today! Regarding liver regeneration, that is a good question for your surgeon. I also had a liver resection, but for some ‘strange’ reason, my liver did not regenerate back to capacity. it’s just one more way I’m ‘outside the box’ with my CC journey, according to my doctors. But for only having 25% of my liver left, I’m doing OK.
I think I can speak for all of us who have had chemo, getting ‘CHEMO BRAIN’ is a very normal side effect. Some chemo drugs cause chemo brain worse than other drugs (at least in my experience, and I have been on several different chemo drugs in the 2 1/2 years since I started down this wacky crazy road). I still search for words sometimes but am better at forming a complete thought and verbalizing it. One thing I have learned to do is, the minute a thought pops into my head, write it down immediately. Otherwise, for me, the thought disappears as quickly as it came. I am always writing post it notes to myself like ‘start dishwasher’, or ‘call so and so’. For a while it looked like (and still does sometimes) that I’m redecorating my home with post its! I also lose my train of thought frequently in the middle of sentence, so I just laugh and say ‘oh well, that train left the station’. Sometimes the thought circles back around and sometimes it doesn’t. Luckily my family and friends are sometimes able to help me reel the thought back in too. Keep asking questions, knowledge is power. Take care!Jill – I have BCBS Open Access. I was originally denied my first PET scan so the doctor had to do a peer to peer review with the BCBS doctor, then jump thru some more hoops but eventually he was able to convince BCBS it was necessary. I don’t know exactly what he said to them but perhaps you can ask your doctor to jump thru hoops too. I have had a mostly positive experience with BCBS.
Kris – you trooper! Thinking of you constantly. All the best for Monday. My prayers and thoughts are with you.
Kris – we are kindred spirits! So many jokes run through my head that others would find positively morbid if I said them out loud. So now is the time to make this solemn vow (ala Animal House): “I, (state your name), do hereby vow to be completely irreverant in the face of this thing that may or may not bring my body down but cannot take my sense of humor, however dark others may find it.” Then ceremoniously eat a big piece of cake, or smear the icing on your face. Whatever makes you feel good. This is just what I needed today!
Results today. Would have loved to remain “ignorant” but it didn’t work out that way. The cancer is awake again after almost 3 months without chemo. Platelets are still in the toilet, my CA19-9 is rising, bilirubin is slowly creeping up. One tumor has grown and I have a couple of new spots. But one good thing is there are no mets outside my liver. Starting on Xeloda, and looking at a bone marrow biopsy to try and figure out this platelet issue. May be looking at a splenic embolization. Until my platelets are at least 100 I can’t even be considered for any clinical trials. Will also be researching a possible chemo pump implant. I need more info. Man, it just gets better and better (said with sarcasm).
Thanks for all the support, and I’m still glad I had my “ignorance” dinner. I highly recommend it, good food, great family, great friends, lots of laughs. This is what I live for.
Kris – SC rocks!I use the same thing that sduggins husband uses. It’s called Emla cream. It’s a great thing but for me it takes about an hour to numb my skin really really well. Tell your Mom to put a big glob of it on, not just a little bit. I hope this gives her some relief.
Does your mother numb her port before access is attempted? I do this every time my port is accessed, with a cream I put on about an hour before and cover it with Glad Press & Seal wrap (it sticks to the skin but not like an adhesive). There have been several times when the nurses were not able to get blood through my port, but it didn’t affect the chemo going in. They explained to me that cells build up at the port opening to the artery and then open and close like a flap, so that when they try to get a blood return it closes but fluid going in pushes it open. I would just have them access a vein in order to do my initial blood work. Sometimes they were able to get a blood return by putting me in one of the chemo recliners and tipping me a little backwards, they called it a positional thing. Also, there is a drug called activase (I don’t know how to spell it) that I have been given to dissolve the cell flap. I used to get upset and really concerned when they couldn’t get a blood return but the nurses told me it wasn’t really an abnormal thing. They always told me they have lots of tricks they could try to get blood return before having to check the port function. But do check with your doc about your concerns.
My spleen is also enlarged, though only slightly, and my platelets are up and down. My doctors have told me that my spleen is “harboring” the platelets and releasing them sporadically, so that’s part of the reason my spleen is enlarged and my platelets are kind of all over the place. Last week my platelets were 56 and this week they’re 46. Hopefully they’ll be high enough next week for chemo (my last treatment was 2 weeks ago), which is annoying to me because you would think the further away from chemo my platelets would go up but instead they bounce around. My docs have given me chemo with my platelets at 59, but they prefer 70. I don’t know of anything to try at home that will help boost my counts, but maybe someone else knows of something.
Hi Kathleen – after the gem/cis stopped working, I did have the spheres, then started on the Folfox treatment. The Folfox treatment makes me tired and low energy, but not as bad as the gem/cis. I also have developed a sensitivity to cold with the Folfox. My dose of the Folfox has been reduced by 20% because my platelet count got really low and I now have treatment every 3 weeks instead of every 2 because my platelets don’t bounce back fast enough. Also my white blood cell count stays a bit low. Wonder why your doc is nixing every treatment for your Mom. Is it because she has mets? Where are you located? Is there another cancer center or oncologist close by? Maybe it is time to get a second opinion. I think with MD Anderson you first send the medical records and they give treatment advice or set up an appt. Others on this site have more experience with that so maybe they can comment. Don’t give up!
Hi lovemymom – your words are so encouraging to me. Thank you so much. As far as advice for your Mom, the treatment I’ve been getting at Winship Cancer Institute (at Emory in Atlanta) has been so amazing that I have not felt the need to go for second opinions, yet. I’m not sure yet what my next step will be, but I will be turning to this board when I have to figure it out. I have not yet been turned down by insurance for a particular treatment that has been recommended, but the doctors did have to jump through hoops with the insurance company so I could get the FOLFOX chemo. I do know that at the cancer center where I receive treatment they have access to programs to help pay, if needed, for treatment. I would definitely ask about that and also get with a social worker at her hospital or cancer center to help with that. I was on gemzar/cisplatin and it also stopped worked for me, then I was offered radioembolization (sirpheres or therespheres). Have you looked into that, or chemoembolization? My CA19-9 has been kind of all over the place, so that number by itself doesn’t necessarily mean something horrible. Please don’t give up on your Mom, her will to live sounds really strong and that can take her a long way. I wish you and your family the best of luck and prayers to get through this crazy thing that’s happening. Hope I was able to help.
Hi jane638 – So sorry to hear about your additional tumors. I had resection, then was on gemzar/cisplatin but it stopped working, then had sirspheres, and then started FOLFOX 6 (which is a colon cancer treatment). Docs could not say if the sirpheres did the trick or it was the FOLFOX, or the combination of both. I would definitely ask your doctors about FOLFOX6. I have had low platelets since right after I started that chemo, and they had to reduce my dose 20% and eliminate the 5-fu push. I am now having to get it every 3 weeks instead of every 2 weeks also due to low platelets. But since gem/cis stopped working, I think my options were limited. As you may have read several times, whatever decision you make is the right one for you.
Thanks to everyone for all your great responses and support! My plan is to continue with chemo but hopefully in Feb or March stop chemo long enough to have my hernia operated on. I call it my “alien”. It’s so huge I had to get a girdle type garment to keep people from running and screaming in the other direction hoping nothing will pop out and get them! (sounds gross right?) Has anyone else had a large hernia operated on with success?
