peggyjm
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His counts have basically “held” since yesterday (platelets are at 10,000 and hemoglobin are at 7) so they want to give him two units of red cells and 1 of platelets tomorrow. (He’s finally getting a PICC line in today…YAY!) Kris, he hasn’t been taking any meds, except now he is taking steroids for the immune thrombocytopenia. The oncologist wants to do a bone marrow biopsy later this week to see if they can figure out why he isn’t making red cells. It seems odd that this is happening now. He hasn’t had chemo since last fall, and finished up his radiation treatments in February. Is it common to have suppression of the bone marrow months after chemo/radiation?
OK, we’re back on the roller coaster!
My brother went back to the hospital today (48 hours after his platelets had gone up to 19,000) and they had dropped back to 9,000. The doctor upped his steroids and he goes back to the hospital tomorrow. If they drop any lower, they will have to give him platelets. His hemoglobin has also dropped a bit, but they aren’t too concerned (7.5, down from 8.9) The biggest concern is the platelets as they can cause bleeding, which will in turn lower his hemoglobin.Great news! His blood counts have stabilized and so the doctor said that it confirms that the problem with the platelets was caused by an autoimmune response to the platelets (his body is attacking the platelets). But, the good news is that the doctor thinks that they can manage it with steroids. So, he is no longer bleeding, his platelets are up to 19,000 (still low but WAY better than 2,000!) and the doctor discharged him today! He has to return to the hospital for a blood check on Sunday and then he returns to the oncologist on the 16th for another CT scan and blood work. But the director of the hospice program said that my brother isn’t ready for hospice yet and that he believes that he has some more “tread left in his tires”. As many of you have mentioned before…it’s a real roller coaster ride, isn’t it? He came so close to not making it this week, and now things are looking good again!
Thanks for all your good wishes and prayers!
PeggyThank you all. Lainy, I received the list. Thanks! I’m off to the family meeting with the doctors and my brother’s family this morning.
I think that it was the “A team” trying to do the IV.
I haven’t had chemo, but I do have small veins that “roll” and have had lots of IV antibiotics over the years and used to have the nurse anesthetist come in to start my IVs. I had them write it in my orders so that if my vein blew in the middle of the night, I wasn’t at the mercy of a reduced hospital staff. For me, though, the biggest factor was the size of the needle. With the larger gauge needles, they just kept blowing through veins.I’m not exactly sure why he isn’t keen on having a port, whether it is because he has to deal with having it in all the time (cleaning, etc?) or just doesn’t want another procedure. He has two more chemos scheduled before his next CT scan and then the possibility of a third one depending upon what the scan shows. I think that he feels at this point that he is close enough to a chemo break that he isn’t sure that he wants to go through the port deal and would rather “tough it out”.
How many Gem/Cis cycles do most people go through before they put one on a chemo “holiday”?
An update on my brother…his numbers were really good today (well 80% of them!) But, good enough to go ahead with his chemo treatment. Good news is that the doctor did confirm that they can probably swap out the plastic inserts in his metal stents when they get clogged.
He has small veins, though, and they have really taken a beating from the chemo and blood draws and it took 2 nurses 11 tries before they were able to do the blood draw. Of course, they had trouble with the IV to run the chemo, too. I’ve given him the suggestions to make sure that he is well hydrated before he goes in, no caffeine, and to use warm compresses. I’ve also found that I do better with a pediatric needle, but don’t know if they will have those on site. He really is trying to avoid a port, and so I thought that maybe some of you have some other tricks up your sleeve of how best to get battered veins to cooperate for blood draws/IV’s.
Thanks!
PeggyHi LadyLinden,
I’m sorry that you are still sore. Hopefully each day will be better. My brother does have a few rough days each time he has an ERCP, but he’s always been jaundiced when he goes in. This one was rough in that he got really sick afterwards. The doctor explained that when they “unclog” the stent, all that crap goes into your system and makes you sick.
Tomorrow he has his blood work done again and hopefully his levels will be good enough that he can have his chemo. He does feel like at least when he is doing the chemo, he is doing something to fight this disease!
Take care,
PeggyDear LadyLinden,
You have been on my mind so much lately as I wondered how your procedure had gone. I’m so sorry that you didn’t have the positive experience that you had with the plastic stents! Hopefully today will be a better day. Did they tell you anything about what the future will be with the metal stents? If clogged, will they put plastic inside them?
We were all worried about how my brother would respond to the chemo, but honestly the chemo has been the easiest part of his whole treatment so far. He said that it’s boring to sit there for 5 hours for the infusion and since he chose not to have a port put in, the veins in his arms are taking a beating. He’s had very little problems with nausea, though, and very little vomiting. It does seem like the chemo is having a positive effect, too, with no new growth and one tumor showing some shrinkage. So, we’re hoping that it will buy him some extra time!
PeggyDear Sandie,
I’m sorry to hear of your little setback! My brother has been on Gem/Cis since August with very minimal side effects. About five days after his infusion he vomits once or twice and then is ok again. Hopefully you’ll breeze through the treatments! Take care,
PeggyHi Wallsm1,
They haven’t mentioned an external bile bag yet. I guess if they are unable to swap out the plastic inside the metal, maybe they’ll do that? We’re hoping that they can swap out the inner stents. Thanks.Wow! It was great to wake up this morning to so many responses!! To clarify, he has had three doctors do the stent placement. Only one had difficulty with the placement itself. The first stent was placed during his initial ERCP, when they were diagnosing his cholangiocarcinoma and it was a single plastic one. It lasted just under two months. The doctors at Mayo suggested replacing it with metal, but his local oncologist said to wait until it got clogged and not to replace a working stent. Unfortunately it got clogged just as his bilirubin levels were finally approaching a level where he could do chemo. It was the local doctor who was going to put in a metal stent and had so much trouble he put in another plastic one, but also ran into difficulties with the stent placement and it had to be replaced right away. He returned to Mayo and the doctor there had no problems placing two metal stents and his jaundice cleared much faster. He has always been sedated during the procedures, but the discomfort lasts for 24-48 hours after the procedure.
It sounds like everyone else is mentioning having plastic stents, which can be switched out. My understanding is that metal stents can’t be removed, so they are in there permanently. They have now put plastic ones inside the metal ones, but does anyone know if they can switch those out once they are inside the metal ones?
Wow, Pat! FOUR ERCPs since June? I hope that the one you are having tomorrow will go as well as the 2nd and 3rd one that you had!
Thanks, again, everyone for your help!
Dear Anna,
I’m so sorry for what your mother went through before she died. This really is a terrible illness, isn’t it?
My brother started with a plastic stent, and it became occluded after a little over a month. Mayo Clinic told him that he needed to have a metal stent put in instead, but he had the ERCP done locally and the doctor couldn’t get a metal stent in and so he just swapped out the plastic stent. It wasn’t placed properly and so he had to go back to Mayo, where they were able to take out the plastic stent and put in two metal stents. The hope was that they would last for at least 9 months, but they only lasted another 2 months. He was told in August that once the metal stents are occluded, that it is a “Hail Mary Pass” to put the plastic stents inside of them, but that there aren’t other good options. From what your mother experienced, it sounds like putting in an internal/external stent is a possibility, even though it doesn’t sound like a very pleasant thing to go through. The problem is that without some way to drain the liver, I would assume he would go into liver failure?
It’s all so discouraging. He has been feeling really good, and has handled the chemo with few side effects. I’m hoping that someone on this site has had a positive experience with the plastic stents inside the metal stents and know what happens when they become occluded.
Thanks, Marion. We’re hoping that someone has had experience with this and can give us an idea as to what to expect. I just spoke to my sister-in-law and she said that he is really discouraged because they told him in July that the plastic stents inside the metal ones don’t last nearly as long as just the metal ones and it is sort of a last ditch effort. He didn’t ask today what the options are once these fail. Hopefully they can swap out the plastic stents inside the metal ones, but we just don’t know.
Hi all,
I have another update on my brother. He was finally able to start the chemo on August 13th. He has had very little in the way of side effects from the chemo and actually said recently that he felt the best he has felt since this whole ordeal started in May. He had a CT scan done recently and got the results two weeks ago and they were better than hoped for! There were no new growths, the largest tumor in his liver had actually shrunk a tiny bit and his labs were the best they’ve been since May. We were all flying high! Then, for those of you who have referred to this cancer as a roller coaster, last week we were jolted back to reality a bit, when his labs were all over the place. Still good enough to do chemo, but not great. Monday he started to vomit and he thought it was just from the chemo. (He tends to do well from chemo Tuesday until about Sunday, then vomits a couple of times and is ok again.) Apparently it wasn’t, as he started to feel worse and worse and when he had his labs done on Tuesday, they were not good, and he is jaundiced again.His doctor called the surgeon at Mayo who did his latest ERCP and double metal stent replacement there and he is on vacation. (Of course!) But, he has had so many troubles with the ERCPs that the oncologist said that it is worth waiting until next Monday to have that doc do it again. (He could have someone else at Mayo do it this Friday, but everyone decided that a couple of days won’t make a difference.) To say he is discouraged is an understatement. He was told during the summer that these metal stents should last about 9 months and then the options aren’t great. They can put plastic ones inside the metal ones, but that it is only a short term solution. The metal stents only worked for about 2 months. I told him to monitor his temp, etc. as I’m concerned that things could get out of control by next week, since he’s already having more symptoms because of the jaundice. Are there other things that he should be monitoring while he is waiting to get in to Mayo? Does anyone have experience with what happens when the metal stents fail?
I’m 9,000 miles away in Singapore and feeling very worried and helpless to do anything for him.
