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dpcaregiver Member
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my husband was diagnosed with MM on 10/23/08. He is scheduled to start DPCAE on 1/5/09. From the schedule I've been given, during the week of 1/10 thru 1/17 he will not be doing much except the "shot' to stimulate his stem cells. My question is 1. how sick will he be this week and would it be wrong for me, his caregiver, to go on a 7 day trip back east that has been planned for 6 months as long as I have another caregiver (daughter) staying with my husband? Also, is this the time we would need to be 15 minutes from the hospital (we live about an hour away). We can't seem to get any answers as to how sick we might expect him to be or what actual danger he will be in. Any help out there??? |
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DougC Member
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It's impossible for anyone to tell you how sick your husband will be on D-PACE; each patient reacts differently. I can tell you how things went with me during the stem cell harvest. I had my stem cells harvested Jan 08. I've had three rounds of D-PACE since being dx in Nov 07. I can honestly say, D-PACE never made me sick. I've spoken to many patients over the past year and only a few that I've spoken with got sick from the D-PACE. BUT, D-PACE is chemo and it does knock your white blood cells down to near zero. That means there's potential for infection. I did get a staph infection during the stem cell harvest. So yes, it has its associated risks in that regard. The caregiver and your husband will need to watch for fever...meaning, take his temp often. Yes, during the stem cell harvest...while on D-PACE and the couple of weeks after, he will need to be within 15 mins of the BMT clinic. I was told as long as I had 24hr coverage of a caregiver I was ok. I live about 2 hours away. We stayed at the Homewood Suites for every treatment. Whether or not to take the trip is a personal choice only you can make. I guess you know which 7 days you'd be gone? The way I remember it, I started D-PACE 27 Dec and wore the chemo pack 24hrs a day for 4 days. During that time we went hiking around the valley and hit the gym in the hotel. I had my first neulasta shot on 1 Jan. On 7 Jan I had a cathader placed and received my 2nd neulasta shot on the 8th. Also on the 8th they began harvesting stem cells. On the 9th they harvested more and I was done. I went home on the 10th of Jan. However, I went home with a staph infection that I treated at home with the help of home nursing. Feel free to e-mail me if you have patient - to - patient kind of questions. Best of luck to you and your husband. Doug |
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dpcaregiver Member
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Doug thank you so very much for your reply. My trip is planned for the week "after DPACE" so it sounds like I may be able to leave. Is that the time (we only live an hour from Huntsman) that you had to stay closer to the hospital?? I definately understand that each case is different. I just want to do what is best for my husband, but I also need to take care of me too so that I can better deal with his needs. |
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Annick Member
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Hi DPACE caregiver, Yes, the week after DPACE you still need to hang around close to the hospital so that your husband can be brought in quickly at the first sign of infection. When someone doesn't have an immune system after chemotherapy such as DPACE, an infection can quickly become very dangerous, especially if an hour drive under the best circumstances becomes an hour and half to two hours because of winter weather. As Doug C stated, it would be impossible to predict how your husband will react to DPACE, but most patients can get through DPACE with the usual chemo symptoms (some nausea, fatigue, loss of appetite, etc) and will not have unusual complications, provided that your husband will take all of his supportive care medications (antibiotic, antiviral, antifungal, antacid, and antiemetic (i.e. anti-vomiting) according to his prescribed schedule. If you trust that your daughter will follow the clinic directions to the letter, and that she will bring her father in as soon as there are any signs of infection, I think it would be ok for you to travel. However, please realize that I cannot guarantee that your husband will not have any complications. I hope that helps, and I wish you and your family a wonderful holiday and a happy and healthy 2009. |
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DougC Member
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During the week after receiving D-PACE your husband's white blood cell counts will slowly begin to drop. Other counts will drop too, but to keep it simple, we'll just focus on the whites. It takes about 6 days after the neulasta shot before his white blood cell counts will start to swing higher. During this time he may have side effects from the neulasta shot. Basically, his bones in the small of the back and maybe his ribs will ache. I had a lot of pain, others little. As Annick said, he'll have the drugs he needs to counter the side effect of both the D-PACE and neulasta. If he takes the pills as instructed, he should do ok. It's also very important that he communicate to the nurses and the PA. They can't help if they don't know. Don't hold anything back, communicate. The 4 days he's on D-PACE is kind of emotionally tough since it will probably be his first round of chemo infused through an IV using his port. That sort of freaked me out. You'll probably use the clinic to change his chemo pack each day, but home care is another option. With home care they come right to your hotel room...or where ever it is you stay. Personally, I liked the clinic over home care. Lets recap, 4 days of chemo, 2 days labs plus a neulasta shot on day 6, then roughly 7 days until white cells start to climb, cathater placement and second neulasta. Depending on the timing, you may start harvesting that same day I believe. If too late, he'll start day 13...at least that's the schedule I experienced. The harvesting of stem cells can take 2 to 4 days I believe...each person is different. The harvesting is really uneventful...the term is far more scary than the procedure. However, it is yet another emotional event for all involved....both patient and caregiver. It may sound odd, but it's kind of a nice event to share with your caregiver...I can't really explain it. You make a good point about needing to take care of yourself. I'd say that applies emotionally and physically. It has got to be tough keeping the positive game face on 24/7 during the treatment schema and beyond. But somehow you'll manage to do it. If you get a cold or flu, it shakes up everything. Now you almost become a threat because your husband's immune system is going to be very suppressed. Him getting sick means the schedule may get pushed back and even worse, he may have more serious complications. There's enormous pressure on the caregiver. The patient goes on these wild anger/aggression/depression rides thanks to dex and the diagnoses itself. And who's right there to take the telephone pole to the chest? Yep, the caregiver. So, whether or not to take the trip is yet another one of those internal battles you'll get to wage....I'm very sorry. Lastly, I read your other post under Kathy's story. I sense frustration with scheduling. I suggest you communicate, communicate, communicate. If you need to file family medical leave act paperwork with your employer, do it...talk to your coordinator. If you need more notice of appointments so you can better schedule leave with your employer, communicate that need with your coordinator. If an appointment just can't work, talk with your doctor about rescheduling. I found the stress surrounding appointments was almost as bad as that surrounding the treatment itself. You must communicate. Don't be shy, communicate your needs to the staff. Which leads me to one last point. It's important the caregiver be someone who can take notes, communicate rationally, and execute the plan. Your husband will not always be the most coherent person in the room ;-) Sorry for the long winded post btw, I never thought I'd make it through the two transplants and consolidation, but I did, as have thousands of others. Those of us whose chose the tandem transplant have chosen the biggest stick in the wood pile to swing away at the beast. Fight the good fight. Best of luck |
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dpcaregiver Member
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Thank you for the reply. Once I was finally able to get more information (thank you Doug C) about the process I've cancelled my trip. Wouldn't be a problem if they would just give us a refund. Oh well. We do have some concerns with my husband's increasing groin pain. Talking to the BMT yesterday we were told to check in with our primary care giver if we 'feel' it needs immediate attention. That to us is frustrating as we are trying very hard to go to HUNTSMAN, not drive another hour somewhere else. Huntsman has our records, Huntsman has done all of the scans, blood work, etc and to have to play the start over with more tests somewhere else seems to be a waste of time, money and simply wastes more time NOT getting his proper Myloma treatment. Am I wrong to want Huntsman to deal with these issues as they come up? When we called the BMT we were told his groin pain, which has been increasing for the past 2 weeks while we wait to get DPACE started may or may not be Myeloma related. That would be why we feel Huntsman is the better direction as they are the specialists. We've already had to deal with another hospital with high fever and infection as Huntsman didn't want to see us 'yet' since we hadn't been matriculated to Huntsman at that point. We are now, so we prefer to come there, but feel we are being shoved aside as it is another holiday and comin up on another week-end. We were moved back another week as of yesterday, to start DPACE becasue we can'tbegin that until we go to the "orientation' which they only do on Thursdays, but Christmas and New Years have cancelled the next 2 classes and won't have another one till the 8th. We could have gone last week or the week before, but no one told us. I expect all these feelings will go away once we can finally get "GOING" but it is scary watching the symptoms increase daily as we are waiting, waiting, waiting. dpcaregiver |
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dpcaregiver Member
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Doug How long did you have to stay'close' to the hospital during your DPACE. They told us 3 weeks. |
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DougC Member
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Hmmm, since I'm only a patient, I'm not in the best position to advise on issues that are causing you frustration. Please remember, I'm only sharing my experiences and opinions. Ok, enough of that. Is your husband currently on dex, thalomide, and other drugs like fluconozal, acyclover? I had pain about 2in above my left groin muscle. I believe it was sometime after my stem cell harvest. Anyway, I told the PA (she's not there anymore, moved to MT) and she schedule me an ultra sound. I was concerned I was getting a blood clot or some sort of blockage down there. The ultra sound didn't find anything. I better tell you now, I read so much about MM that I actually created my own problems at times...but I do believe it's better to be informed. I get ribbed occasionally by the staff for the amount of concern/worry I caused myself. They...and my wife.. told me to stop reading :-) The pain went away once I got out of bed and started walking several miles a day. So, I attribute the pain to inactivity. It also could be related to the lose of muscle mass cause by the dex. Dex hits the load baring muscles first...legs, butt, hips, lats, you get the idea. Anyway, what I would do if I were you, is make sure my insurance company will cover treatments outside of the BMT clinic but still under the University system. I would approach the PA first about getting a referral to one of the clinics at the U of U...they have all the clinics you'll need. If not happy, I'd move to the coordinator. If still not happy, contact your doctor and the clinic manager at the same time via e-mail or whatever it takes. As I said, I was referred for an ultra sound by the PA. In addition, I was referred to the dental clinic by my coordinator because of a concern I had over a tooth/crown. I even requested an additional pulmonary exam and was scheduled for it by my coordinator because of a concern I had about some breathing issues I developed. I agree with you, the University has everything you need. All you need from the Huntsman/BMT clinic is a referral. Don't give up, you're at the right clinic. I know how frustrating scheduling can be....trust me. That's why I said, communicate. At times the communication can get frustrating...stay the course. I keep telling you to communicate. Well, it's just as important for them to communicate with you. The problem is, they're over taxed at times. You won't be able to sit back waiting for them to tell you about dates for classes or treatments; getting new prescriptions; side effects; follow up appointments; nothing. You'll have to stay on them because they're dealing with a lot of patients all in various stages of treatment. The coordinators and the PAs are the keys. Don't assume they're working something or know what you need. Always check with the gals at the front desk on the way out that you have a scheduled appointment. Don't ever leave that place without one...I assumed way too many times that one was scheduled for follow up and it wasn't...though they always took care of me...always. Don't ever leave during the hard treatments without the PA clearing you to leave. Sometimes the blood work comes back showing you're low on something and if you've already left, you'll be driving right back up there...been there, done that. Trust me, the BMT clinic will take care of you. It's all scary. You won't be comfortable with it for a long time. However, at least you'll know what's normal side effect type stuff and what isn't. You'll know what to expect. There are just so many twists and turns along the way...you'll be one tough cookie by the end I'll tell ya. But hey, your husband, family and friends are the ones with the cancer...fight for what you need. Sorry about the long note again and the spelling of those drugs. I should also tell you I'm a retied military guy so I need to leave my appointments with a plan. I need structure. I need to know my enemy. I need to control. Sad part is, I'm trying to control something I can't...Myeloma. That's why I rely on my doctor and his staff so much...they've been great! Fight the good fight! |
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DougC Member
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Yepper, about 3 weeks depending on how things go. Again, each situation is different. However, I believe 3 weeks is the standard. The nurses know more than anyone about things like length of stay, side effects, etc. Of course, each case is different. We stay at the Homewood Suites. The suites are clean, have a dishwasher, full sized fridge, stove, no oven. The bigger rooms have two flat screens, seperate rooms, real nice. |
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Annick Member
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Hi DPACE caregiver, I'm so sorry to hear of your frustrations with the clinic. DPACE should not be contingent upon completion of the education class, and, in fact, if you're husband is in need of urgent treatment, he should be receiving it urgently, regardless of the holiday. Since I don't know who your husband is or the specifics of the situation, it's difficult for me to comment beyond this, but I would be more than happy to help you out in any way that I can. You may e-mail me at annick.tricot@hci.utah.edu with your husband's name, and I'd be happy to review his labs and scans to make sure that he's medically ok to wait on DPACE. And, if there are other problems you'd like addressed, please feel free to let me know. Our intent is to be of help to you and your husband as he navigates this treatment process, and if we've caused any frustration, I apologize. |
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dpcaregiver Member
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Wow, You guys are AMAZING! Within a few short hours after my "frustrated" post, I received a call from our coordinator to help with our frustration and assure us we were not being put on hold just because it is the holidays. She had received a call from the man himself (Dr. Tricot) when he read my posting. Alrighty then, I am so impressed that the doctor actually reads these posts. Just so you all know, we do believe in Huntsman, we just didn't understand fully what realy was happening behind the scenes so to speak. After our coordinator's call, one to me separately and another to my husband, we feel much better that he isn't going to die before the first week of January, his cancer isn't spreading as aggressively as we were afraid. The "other" oncologist we went to at ANOTHER hosptial (never to return) told us he needed to begin treatment immediately and that "he could die within six months if we didn't" when we tried to delay any treatment before getting into Huntsman. He had a more aggrresive form, etc. He also said Kim was Stage III B and there was no Stage IV. That is just to help you understand why our fear and overreaction. Now that we have been assured he is okay, and have an actual appointment scheduled, things have calmed down at our house. We were also given the Patient Education Binder, we are able to start making arrangements for housing, clothing, food, etc. Our biggest fear was that things were hapening in my husband's body that were going to be unreversable. Anyway, THANK YOU FOR RESPONDING so fast. We feel better and are in awe of how fast we were respnded to. For now, Merry Christmas to all and to all, A good night. |
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DougC Member
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Annick ,is amazing, isn't she? A call from the man himself; now that's what I'm talking about! You're in good hands...I trust "the man" and his plan fully. From one patient to another, and his caregiver, best of luck Have a wonderful holiday Doug |
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Dizzy1 Member
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Hay dpcaregiver.. I am is the same Caregiver boat as you are. I also was stressed about scheduling and all, but I think we are rolling now. Sounds like we will be on the same schedule, my husband will get his centeral lines in on the 2nd and start chemo on the 6th. You also said you was looking for a place. We found one not on the list and they have plenty of places. It is called the Chase hotel and suites, we have one and they are pretty clean and close. If you want more info on them e-mail me mdallred@wirelessbeehive.com Would love to chat with anyone going through all this, they are right that the Care giver is the one carrying it all, and we need to keep it together. Also my husband would love to talk to DougC if he wants to talk on the phone. My husband is Mark and he dont do the internet thing LOL Thanks everyone for all the info here. |
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