Stephi Posted November 10, 2005 Share Posted November 10, 2005 My husband (IIIB) was put in hospital yesterday with low (1.1) white blood count and dehydration. He started his 2nd round of chemo last Wed. Straight taxotere, no hydration once every 3 weeks. He was very weak, mouth sores, slight fever, chills. The bed situation is bad here (New Orleans) so they didn't put him on the cancer floor. It seems that half the wing he is on the nurses put on gowns to go in the rooms..also visitors. There is a sign on my husband's door saying no plants, do not come in if sick, etc. I have caught several nurses coming in without washing their hands and called them on it..They Drs. on rounds when asked about this said they weren't really worried about it..also when told he had mouth sores after looking at them, said that they didn't "look" too bad, so he wouldn't perscribe any mouthwash for the pain..he isn't able to eat because of these..I am very frustrated, and would almost rather have him at home..which the Dr. said was an option, even though the white count has not gone up but is stable...I am getting very uncomfortable with this..also the nurse last night was an idiot..even though he was admitted at noon, he didn't get his night meds until midnight after I asked several times for them..I understand with the hurricane they are understaffed, but every time I went to find the nurse she was standing there talking and not doing anything...any ideas???? thanks Stephi Quote Link to comment Share on other sites More sharing options...
Ry Posted November 10, 2005 Share Posted November 10, 2005 Well except for the hurricane part we went through the same thing. John ended up with pneumonia due to his counts being so low. They explained to us the masking up, plant thing etc was to keep all germs away from him while his counts were so low. It is good you are being an advocate and watching the infection control procedures carefully. Hospitals are germ factories and if you think he'd be better at home then ask the doctor to release him once he is hydrated. Swishing his mouth with an antacid like Maalox or Mylanta will help neutralize the acid in his mouth so the sores can heal. Once he goes back to treatment, make sure he drinks lots of water with the taxotere. Good luck. Rochelle Quote Link to comment Share on other sites More sharing options...
Don Wood Posted November 11, 2005 Share Posted November 11, 2005 My wife gets Neulasta shots for white blood cell buildup when she is on chemo, as now. I would ask about it. Also, I agree you should get a mouthwash. If he has sores in his mouth that are interfering with his eating and drinking, this is serious. There is a magic mouthwash concoction the onc can prescribe for him. The sores are a side effect of the Taxotere -- my wife has had that with chemo. I, as my wife's primary caregiver and advocate, always advocate to move her back home as soon as possible when she is hospitalized because of germs in the hospital and being home helps the mental and emotional attitude. Don Quote Link to comment Share on other sites More sharing options...
Snowflake Posted November 11, 2005 Share Posted November 11, 2005 Stephi, If you think you can take care of him at home and your home clean enough (considering the hurricane, mold growth, etc.), take him home. Check to see if you can get a visiting nurse to stop in and check his hydration, possibly pull blood for tests at the hospital, and check him for signs of infection. If you think there's a possibility of mold in your home, do NOT take him home. If your doctor will not prescribe the mouthwash for his "not so bad" mouth sores, ask again - and suggest the option of finding another doctor. Remember, YOU are paying HIM, if YOU (you and hubby) are not happy with him, trade him in! You have to decide what you are willing to put up with in a specialist. My oncologist is very good, and there are times I have to wait to see him for over two hours. I HATE waiting, but I wait for him. Many times, my appointments have gone longer than what was on the books, he makes sure my questions are answered before I leave - and he does the same for all of his patients. He does rounds before he shows up in his office (before 8:00 AM) and he's there well into the evening hours (I've been in his office at 7:00 PM and seen patients waiting for him on my way out). He's good, and I'll wait - but if I didn't think he was worth it, I'd be shopping around. A doctor who is not concerned about his patient's comfort is not a real great doctor, in my opinion. You have my permission to chew some butt and make 'em snap to! Nurses should wash their flippin' hands, it's really a no-brainer, if you're wearing a mask, there's a germ concern. Heck, I'm a blonde and I have THAT figured out! Keep on 'em - it's important! Take care, and good luck! Becky Quote Link to comment Share on other sites More sharing options...
Patkid Posted November 11, 2005 Share Posted November 11, 2005 No ideas, Stephi, just lots of prayers and support. Pat Quote Link to comment Share on other sites More sharing options...
daggiesmom Posted November 11, 2005 Share Posted November 11, 2005 If you can, I'd take him home. Use mouth wash as much as possible. Hydrate him with plenty of Gatorade (great, better than water anyday). Get him to eat as much as possible. See can you get him a shot of Neulasta for the white cell count, and keep him away from other folks as much as possible if his white cell count is low. GO FOR A SECOND OPINION. I don't like the sound of this particular doctor. Please let us know how you're doing. Along with having to deal with this, you've got a special situation considering where you are. Infection is dangerous and you've got to guard against that as much as possible. Joanie Quote Link to comment Share on other sites More sharing options...
cindi o'h Posted November 11, 2005 Share Posted November 11, 2005 ditto ditto. And if he stays in the hospital and the doc is the same and won't give him something for his mouthsores, go to the pharmacy and ask for something to numb his sores. You can apply with a long q-tip applicator. Or try the dentist. They are usually very compassionate and knowledgeable when it comes to mouth sores.. they understand. I hate that you are in that position. But, I am glad that your husband has you there for him! Cindi o'h Quote Link to comment Share on other sites More sharing options...
Leslie221 Posted November 11, 2005 Share Posted November 11, 2005 It is so frustrating and upsetting when other people don't seem to show the diligence and concern for someone you love when they're ill. This is the most important person in your life and he is going through something serious and it sometimes seems like you are surrounded by people who are over-worked, under-concerned, and just plain don't take you seriously. Glad you are his advocate - it's important to have someone be your advocate when you're "at the mercy" of hospital staff. Your concern, questions, and repeated requests will help get him the treatment he should have. Sending caring thoughts that care gets better and mouth sores are treated soon! Leslie Quote Link to comment Share on other sites More sharing options...
mamasbabygirl Posted November 11, 2005 Share Posted November 11, 2005 Also, for non-radiation related mouth sores, my mom has to take diflucan. Ask if they will prescribe that. I am so sorry that you have all of these worries and you are RIGHT to stay by his side and make sure things are handled properly. Don't feel bad about it, AT ALL!! I kind of saw that as our job while mom was in the hospital. Quote Link to comment Share on other sites More sharing options...
Ann Posted November 11, 2005 Share Posted November 11, 2005 Wow, I am so sorry you have to deal with all this. I guess it's things like this that we don't think of when we think of the aftermath of the hurricane and its devastation...and I live in Florida. You know, I'm always hesitant to give any type of medical-related advice on this board but I have to say that I think you should consider caring for him in your home, circumstamces allowing. I would think that you could better limit the risk of coming into contact with infections if you were home in an environment you could control. How in the world can this doctor be even the least bit hesitant about ordering something for his mouth discomfort? Hey...if there is something out there (which there definitely is) that can limit pain and discomfort, why would anyone be at all hesitant to prescribe it? I know you have some tough decisions to make regarding your husbands care so be strong. I'll be saying prayers. Quote Link to comment Share on other sites More sharing options...
Maryanne Posted November 11, 2005 Share Posted November 11, 2005 Hi Stephi, Wow, you certainly are going through some stressful times. I am sorry he is going through all this pain. His doctors seem unconcerned and that is not good. I would look for more caring doctors when you get out of the hospital. After he is hydrated see if you can get him home ASAP. If your house is safe. I don't have answers as far as the mouthwash. I know there are plently of people on here who have had answeres to that. I want you to know that I am thinking of you and pray your husband will feel better soon. Poor guy he is going through so much. Keep doing what you are doing, complain, yell get their attention howerver you can. This is your husband and you want the best care for him and for him to be comfortable and pain free. Keep us posted. Maryanne Quote Link to comment Share on other sites More sharing options...
Stephi Posted November 11, 2005 Author Share Posted November 11, 2005 I called his regular oncologist..for some reason she was not on the floor...but just in the cancer center. They are giving him Neulasta...she called up a script for the mouthwash ..and I am bringing him home today..... I have all his records that I will be faxing to MD Anderson. Since we are so limited on hospitals here I will feel much better for a comp. cancer center to give us advise. It is possible for us to go to Anderson, and if surgery becomes an option for him thats where we will go. We were fortunate that we did not get any flooding after the storm, and I had the house tested for mold before I let him come back in here to be sure it was safe. I have always been proactive where Drs. are concerned..and have had to remind a few they do work for US!!! there are still some out there with that "GOD" complex...I do so much research and read so much from other cancer patients that I can be "armed and dangerous"....since this storm it just seems like I have become a bit overwelmed and wonder sometimes if it will ever get better..as much as I love this place, I'd like to leave and forget all this pain and devestation exists.. thanks again for the great posts.. Stephi Quote Link to comment Share on other sites More sharing options...
tnmynatt Posted November 11, 2005 Share Posted November 11, 2005 Stephi, Sounds like you got things back on track. Keep up the good work! It does pay off. Take care. Quote Link to comment Share on other sites More sharing options...
mamasbabygirl Posted November 11, 2005 Share Posted November 11, 2005 Good work Steph! Quote Link to comment Share on other sites More sharing options...
RandyW Posted November 11, 2005 Share Posted November 11, 2005 You Rock Steph!!!!! HE is lucky to have a "Coach" Like you in his corner. He is The True Fighter, therefore you would be the coach directing the fight. Good Luck Quote Link to comment Share on other sites More sharing options...
Maryanne Posted November 11, 2005 Share Posted November 11, 2005 I am so glad Steph that you took the bull by the horns until you got results. When are you leaving and which MD Anderson are you going too? I know they have a couple locations. I know there is one in Houston. Keep us posted and updated if you can. I am so proud that you are doing all this. I will keep Larry in my prayers. Maryanne Quote Link to comment Share on other sites More sharing options...
Stephi Posted November 13, 2005 Author Share Posted November 13, 2005 Thank you all so much again for the support and prayers. We got home last night...count back up to 4.3 but he is still tired. Good thing is he is not smoking..caught him trying to take a puff or 2 and it made him sick!!!! (prayers answered!!!) He has been pretty "touchy" to say the least....Our daughter is here today and tomorrow, so that helps a bit. She can keep him occupied while I get some things done...now if he will just stop drinking...lol guess ya can't have everything.... Looks like these chemo sessions just won't be as easy as the first ones...much stronger though, so hopefully these will shrink the tumor alot. When he is told they can operate, we will go to MD Anderson in Houston. They gave us a second opinion in May this year..said then it was operable, but sent him hone for pulmonary rehab, and to stop smoking and drinking...He has to take another pul. function test to be sure he can survive if they take an entire lung. I understand that in reality, they don't know what is there until they get in. A friend just had surgery, they thought he had several tumors...he had scare tissue, they were able to only take a section and there hadbeen no spread...yeahhhhh, so this man went from thinking he had little time to live to now a possible complete cure..miracles do still happen, and I keep the hope and faith for all of the lung cancer patients.. May God's Blessings be with you all Stephi Quote Link to comment Share on other sites More sharing options...
kamataca Posted November 13, 2005 Share Posted November 13, 2005 What a rollercoaster ride you are on, Steph! Glad you are such a take charge kinda gal in this situation. I'll be praying for you! Kelly Quote Link to comment Share on other sites More sharing options...
KarHart Posted November 22, 2005 Share Posted November 22, 2005 Stephi, I came into this post really late. I hope Larry is doing better now and on the way to having surgery. Those low white counts can really get you, glad his are back up. Karen H Quote Link to comment Share on other sites More sharing options...
ma's kid Posted November 22, 2005 Share Posted November 22, 2005 I also came *late* to this post and am praying for you both! You are a wonderful, caring advocate! Love, Libby Quote Link to comment Share on other sites More sharing options...
Maryanne Posted November 25, 2005 Share Posted November 25, 2005 Hi Stephi, You havn't posted sind the 13th, can you give us any update on Larry? I hope all is going well. Maryanne Quote Link to comment Share on other sites More sharing options...
Stephi Posted November 28, 2005 Author Share Posted November 28, 2005 Larry has been home for awhile and back to work. he was feeling pretty good until Thanksgiving Day..a bit tired and then he has started thoe flu l ike aches and pains again.. I did temp, bp, etc. and no problems that I see..they gave him injections for red and white blood counts..(to keep them up)..so I don't know what this is..I will call the Dr. tomorrow and I'm sure she will want to see him..He is major grumpy though... Last night I was doing my daily research and ran across the article by Dr. Sewell at Miss State Medical center in Jackson. He is doing a radiofrequency ablation..I think they also do these at the "Cancer Centers of America"....I wrote to them to try to get an appointment or at least a consult to fax records to them. I was wondering if anyone has had any experience with this..here's the link if you are interested. http://vir.umc.edu/rfcontact.html I'm so sorry I've not posted in awhile. My house is still upside down with the repairs and renovation from the storm. My floors are still not in and I've been trying to get all the things I could do done, so when the workmen get here tomorrow everything is layed out for them..Looks like my floors will be the last thing done (next weekend)..so I have everything ready to go in place right away (including my Christmas tree which I have put upstairs and decorated!!!! I have this urgency about Christmas this year..as all of us do..you just wonder if this will be the last and want to make it as special as possible. Thank goodness this repairs stuff will be over soon..and then the next weekend I go to the gift show for the weekend..I go with my cousins and will stay overnight..the hotel in inbetween the convention center and the casino...we look forward to this each year, and I desperatly need it... thanks again for the prayers and caring Stephi Quote Link to comment Share on other sites More sharing options...
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