April 30, 2014 at 7:40 pm #82023
Matt…I called the Hope House and indeed you have to have at least three treatments for cancer a week. I guess, Thank God, I don’t have to do that…..I will be grateful. However, if you can take care of yourself, you don’t have to have a caregiver with you. It is indeed free as long as you meet the pretty simple criteria and would be an incredible place for someone to stay while battling cancer for the various things they do for the patients and families.
Meanwhile, she suggested that I call the Mayo Patient Advocates which I did. They are going to put together a package of possible places keeping in mind my reason for being there and the time intervals. She was also extremely knowledgable about other things….including our type of cancer and also the doctor’s names. She wanted to know who I was seeing at Mayo and when I told her Dr. Domingo who is an oncology fellow, she was familiar with him. I then mentioned Dr. Grothy, who appeared in my patient notes after the l6 week post op checkup and she filled me in on him….he is a liver, Bile Duct and Pancreatic specialist….also colon cancer as well…..as that was the only thing I could find on him with a quick web search.
I told her my story…briefly as I could, as to why I was wanting to make a switch to another doctor and she said she thought it was very reasonable to do considering the interaction I had with my local guy.
I think if he brought in another doctor or two and could share the duties, he could go back to the type of medicine he wants to practice, but he is overloaded (still giving him the benefit of the doubt because of the glowing reports from so many people). It just isn’t working for me. With this being a rare cancer which he apparently isn’t that versed on….and being stretched too thin (IMO), and with my additional problem with diabetes and some allergies I’ve had with medications, I think I need the team approach that is found at Mayo. I HAVE to get this blood sugar back in control, or I could be in serious problems with blood clots.
I had forgotten entirely about the patient advocate program. So, if you go back there again…assuming you are…..you might check in with them as well. If I can get this arranged at Mayo, we might even run into each other…as I think you said you had to go back this summer for a scan? I’ll be finishing up 4 rounds of chemo at the end of July…and then try for two more, “God willing and the creek don’t rise.”
Just gotta get this all figured out…but at least a start today. I may do the gem infusion here next Tuesday….just to give myself time to set up things at Mayo if it works out. That third week being off would help out the timeline a lot. I shouldn’t have as much problem with the gem alone from what I’ve heard.
Thanks again….you’ve been a lifesaver today.
Julie T.April 30, 2014 at 3:21 pm #82020
I’d think it’s worth a call to see if you qualify anyway, if you haven’t already.April 30, 2014 at 3:16 pm #82019
Matt…Hope House Lodge looks wonderful, however, one of their requirements is that you must be receiving outpatient cancer treatment or support three times per week….and blood draws, Dr. appts, etc do not count. I’m not sure of the difference of treatment vs supoort, .but with only one infusion on day one and 8, that throws me out of the running for one of the rooms. DRAT….what a great idea though, I will remember it to pass along to others as a possibility.
Onward to the next idea.
Julie T.April 30, 2014 at 3:05 pm #82018
Matt….first….the blood test will only show that you have had H. Pylori….and not necessarily that you have an active infection. That said, it’s hard to get rid of it…very resistant these days to antibiotics….so the regimen my GP suggested was 3 different medications at the same time to eradicate it.
HOWEVER, I had asked her to have a breath test or poo test as these will detect actual active infections of H. PYlori. She did not think those were available here in our area…and possibly only in a study situation. Interestingly enough, the oncologist as least did say he could do the poo test in his clinic lab, so that is what we are doing. It will hopefully show whether there is an active infection in the gastric tract that needs to be treated, rather than treating antibodies that might indicate a previous infection that has been cured. That said….it can’t be cured easily, so unless you were on something really strong for a number of days, an infection likely would still be around.
The current reading I did this morning was that they think reflux in the duodenum may be a way that H. Pylori makes it way into the bile….but that isn’t confirmed. I think they had some other ideas.
My husband is going to be tested,….as he had a rare tumor of his colon (very large, but caught before it turned malignant….even the surgeon told me it was cancer the day it was found on a routine colonoscopy). He’s had two ulcers, but each time I think that no H. Pylori was found….but they’re still checking his old records. Now we are trying to decide if our son, daughter in law and kids need to be tested, because this is easily transmitted with body fluids….and that little grandson of ours traded bites of food with me…and he with his parents. Sigh…that just breaks my heart…but at least if a poo test can be done, they won’t have to do a blood draw on the little one.
Thanks for the links to Hope House. Will let you know what i decide on going back to Mayo or what I find out about Hope House. I think it may be my first call after looking at the link.
Julie T.April 30, 2014 at 2:52 pm #82017
After reading your post on H. Pylori I actually sent my local GP doc an email asking him if I could get a blood test for it and, if positive, be treated with antibiotics…
Here’s the link to the Hope Lodge – there’s a free shuttle to/from the clinic too. I’ve not stayed there personally, but it looks very nice. I’m not sure if you’re allowed to stay without a caregiver with you… things to look into, for sure.
Keep us posted. I’m rooting for you!!
-MattApril 30, 2014 at 2:43 pm #82022
Matt, did not know there was a Hope Lodge via Cancer Society there. I have experience the Mayo system twice in my life….once 35 years ago when they removed a volleyball , benign tumor from my uterus that let us go on to have a full term birth of our only living child after local specialists said I would probably have to have a hysterectomy. They actually lied to us…flat out lied that they didn’t know of any other doctor /surgeon to try the surgery except their buddy. As it turned out the Mayo doctor was one of the two top gynecological surgeons in the world at the time and his response was that they do this surgery every day, and though my tumor was some larger than most, it was doable and he expected us to go on to have another child, which we did. I actually wanted to go back to Mayo for the pregnancy, but was nixed by my husband….so we went to the U of Iowa, because I wouldn’t go to ANY of the OBs here in town.
Now, here I am again, and as before, Mayo didn’t disappoint…or not much. Having an oncology fellow as my primary doctor, was a little more stressful because he was overly cautious and dug into everything imaginable and scared us silly that we might be dealing with mesolelioma or sarcoma of the lungs…or something, who knows what, growing between two other organs (obviously was an adhesion from my previous surgery and a cesarean to boot…lucky that’s all there was from those two.
Yes, I do believe I deserve better….and though they have marked my chemo as being curative instead of the other two catagories, I feel that when he first met me over a week ago, he probably figured he was dealing with another terminal case which colored his opinions somewhat, but there more to it than that. On Tuesday, he was openly hostile to me in front of his staff…..everything got very quiet except for his angry outbursts.
I will check into the Hope House to see what I can find out. My husband could take me up there, stay with me for the chemo and then maybe go back home to work for a week and a couple days…to gt through the day 1 and day 8 infusions and then come get me to be home for a week and a half. It would be incredible lonely, for both of us….we’re both worried about each other….but it might be the best solution. The day 8 infusion is only the gemcetibine, and not as likely to cause issues. A hotel situation would get very costly and my husband can’t take off that much work right now.
Now later this morning, I am still dealing with what seems to be issues with mild tightness in my chest…and mild breathing issue from the tightness. After two Benadryl capsules in the late wee hours, the itching has subsided on my arms pretty much and my legs are much quieter, though there are still itchy areas, just not all over from foot to mid thigh. I’ve been sitting here in the recliner off and on since 4 a.m. with my feet up…trying to drink more water and keep the fluid from pooling in my legs so much. Every once in a while, I get a very wierd sensation in my legs, kind of like after your foot or hand falls asleep and it starts to tingle as it wakes back up. It’s momentary, but something I’m tracking.
Thanks for the encouragement…it helps give me some resolve to do something proactive. My husband is great, but he hates to see jumping from one place to another….even though he said earlier he would be glad to drive me to Mayo for the chemos. But I reminded him of the last time I didn’t follow my gut instincts……actually two times now. Once, the fibroid tumor that ended in the death of our child when I wanted to change doctors, and the other when I was having diarrhea for most of last year and didn’t go further with it when the colonoscopy didn’t show anything. If a CT would have been done at that time, the tumor probably would have been half the size and with no other tumors present it would have been at most T2a instead of barely T2b.
BTW…I am researching into the idea that an infection caused the diarrhea since it went away for a while twice with an antibiotic, but came back the first time in two months and the 2nd time didn’t come back (but had surgery that removed a good hunk of the left node). My theory is that the infection was from H. Pylori which I have now found out has been studied in Thailand as a probable cause of bile duct cancer. In fact, they said that actually few people infected with the liver fluke parasite go on to develop CC, so there has to be some other lurking cause. Turns out that H. Pylori, contrary to what was previously thought, can indeed live in the bile ducts. I had a blood antibody test that showed I have antibodies to it and thus I may still have it or it had been killed off by some treatment..most likely Vancamiacin which can kill off most everything, but is reserved for only the resistant bugs, like C-Diff of the intestinal tract (which I contracted Feb2012) I’m going to write Mayo doctors about it….copy the studies I’ve been reading and relate my story one more time. After I was diagnosed, I had the “gut” feeling that my cancer was somehow related to that diarrhea, and now I am convinced I am right. One thing this oncologist here has agreed to do, is do a poo test to check for active H. Pylori. I don’t think he is going to find it….but maybe? Stay tuned on that. I realize this isn’t about the chemo problems…but it does take my mind off of them a little bit and when I posted my ideas, I probably put it in a place not as likely to be seen on the boards.
Julie T.April 30, 2014 at 12:51 pm #82021
I’m SO SORRY to hear that you’re experiencing all of this. After experiencing the level of competency and care I received at Mayo I’m scared to go anywhere else… I’m wondering if your local oncologist is behaving the way he is because he has little/no experience with cholangiocarcinoma? That’s no excuse, and you DO deserve better.
Do you have the option to stay in Rochester while you’re getting the chemo? Perhaps you could stay for free at the Cancer Society’s Hope Lodge?April 30, 2014 at 12:12 pm #9903
I had my first infusion yesterday of Gem and Cis with a first bag of stuff of steroid, potassium and something else I can’t remember. They ran the first bag through, then did the Cisplatin in about an hour and a half. After that, came the Gem for a half hour. Part way through the Cis, I noticed that my legs were swelling and uncomfortable so raised the foot rest. Half way through the Cis, I suddenly had a tightness in my chest and had a lot of pressure with about half a breath. The nurse checked my blood pressure, pulse and lungs and everything checked out okay. She had me sit up (thus my legs had to go down) and it alleviated a little of the tightness , but then my ear lobs throbbed for about 30 seconds and when that stopped, my lower teeth actually throbbed for about a minute (actually this is when she checked blood pressure). So, then we had to halt things for a while..maybe half an hour….before the oncologist was free to give her instructions to give me something to kick my kidneys into action. (no urination at that point). Gradually, I was able to eliminate the fluid several times and it seemed to help the chest tightness mostly. We finished the Gem and then waited for over half an hour or more again for the oncologist to come out and speak to me about a drug interaction between an antibiotic he gave me on Sunday with a beta blocker (Atenolol). I had two instances on Monday of very low blood pressure (one tine it was 79/43) which both occurred about 2 hours after taking the antibiotic. I did an internet check for this antibiotic and low blood pressure and low blood pressure. Sure enough, there is a warning about it and in fact if the patient is on Atenolol, it isn’t advised and instead a Z-pack should be used instead of the Erythromycin. The nurse left a sticky note to advise him that we needed to discuss this, but after waiting a long tine, she checked on him again, to find he’d gone into a room with a new patient which was going to take a long time. She advised us to go eat and go home and she’d call us later, which she did at 4:20 p.m. I full expected him to change the antibiotic, but instead he said to take both it and the Atenolol. Well, I hadn’t taken it yesterday morning and did not take it last night either, because sudden cardiac death is a possible side effect of combining these two drugs. Since yesterday, my blood sugar (Type 1.5 diabetic caused by Prednisone) went up to 292 at 2 pm lunch time after getting the steroid in the first fluids bag. Then, at supper it was about 322, even with the insulin I took at lunch time which should have covered it. It was 262 at 2 a.m.. Elevated my legs on pillows in bed and woke up at 4 a.m. with swelling mostly gone in lower legs, but then was itching and burning on the legs below the knee , as well as the backs of my arms itching. Took two Benadryl I keep around for hives and put Udder Cream on my legs to relieve any dryness that might be making this worse. Now it is 6:30 a.m…up since 4 and again had some tightness in my chest when I tried to take the Benadryl capsule. It isn’t as bad as during chemo when it happened, but it’s there and happened suddenly right after I tried to swallow the pill. Have downed a bottle of water since being up at 4 and sipping more as I sit here. I took the Benadryl because I thought this could be an allergic reaction..but mild. The nurse said she’d call me today (Wed) to see how I am doing concerning the antibiotic and Atenolol. I will ask her about that then.
I had made the decision to go ahead and do the chemo here at home instead of Mayo, 3 hours away, due to the overwhelming referrals saying this guy is the best in town and listens…and is compassionate. But, while he did come to his clinic on Sun afternoon to check and treat me for an infection, I have had two encounters with him that we less than great and when I saw him yesterday morning before the chemo, he barely looked at my leg (where he thought the infection was located) and said we would start chemo that day anyway. Then, when I mentioned something he’d said to us during our consult on the 4/21, he rather angrily railed back that he’d never mentioned that word. I was sitting , plugged into the port, so I was sitting, but stood my ground and told him that he had indeed said that…as it wasn’t something I had thought about and had gone home to research it. He again denied more forcefully that he hadn’t said it, so my husband then chimed in and told him that he had heard him too. The “conversation” went down hill from there, if that was possible, after a few exchanges, when he pretty nastily said, “Show me the studies.” I told him I’d have had it there to give to him, but my printer is broken. He left abruptly…never saw him again the rest of the day. In fact, he never came into the chemo rooms to personally check on anyone, including me when I had the problems. I left there in total confusion and tears again….and frankly never wanted to go back. I am again contemplating ditching this guy….I have a suspicion that he is overloaded with work by trying to be an oncologist as well as run the chemo clinic. On one hand, I admire him very much, but doesn’t seem to have time for me and as of the first chemo day, he was downright nasty. Crap, that’s the last thing I need as a patient…trying to worry too much about his sensitivities. I know that he encouraged a male friend of ours to research and they talked at length about his cancer, so I don’t know exactly why he is not taking the time with me…other than maybe it is because he’s over loaded…or…maybe it’s because I’m female and asking questions….I don’t know. But, I do know I deserve better than this. So, today, I will make another call to Mayo…about possibly moving my chemo up there…so that I can make use of the Mayo diabetes department to better control the blood sugars during this and hopefully have a more personal treatment than I feel I’m getting. My other option would be to go to another oncologist in a group in town, but I have NO idea who…and fear I’d be getting into a worse position than I am now. On one hand the local oncologist would be available to see me without the 3 hour drive up there for a possibly emergency, but if we go to Mayo…I may fare better in the short and long run. Right now, I’m wondering if this itching and chest discomfort is a mild allergic reaction and if I will not be able to do one of the two drugs…probably the Cisplatin. Today, I will also probably call my cardiologist here in town to see what he says about the drug interactions. He will probably want me to come down to his office for an EKG, which probably won’t show anything because I did not take the Atenolol for the past two doses and as of this morning, 3 doses. I had such high hopes yesterday when they said to go ahead with the chemo …I needed to get started, but now I’m totally in a mess again, wishing I’d have done something different. Still itching and burning on my legs at 7 a.m….tired and mad. Help.
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