fillise Posted August 9, 2009 Posted August 9, 2009 Well, today is day 7 after mom's first treatent with Alimta and she has been pretty miserable all week. This is much harder on her than the Carbo/Taxol/Avastin, though her onc told her this regime was fairly easily tolerated. Not for her! I see that it is giving other folks trouble as well. She is experiencing a level of fatigue and SOB she has not experienced before. I am hoping that she will start to turnaround today. If she doesn't she is going to call the Dr. tomorrow. Susan Quote
Patti B Posted August 9, 2009 Posted August 9, 2009 ((((Susan)))) I am so sorry your mom is having a hard time on Alimta. I was on it for about 7 - 8 months and the fatigue and SOB (which never got TOO bad) did not start until about 4 - 5 months into it. But then, everyone is different. Is she taking the daily folic acid and getting the Vit B12 shots?? Hope things begin to turn around for her soon. Hugs - Patti B. Quote
Treebywater Posted August 10, 2009 Posted August 10, 2009 Alimta was ROUGH on my Mom. And the Carboplatin/Gemzar combo was nothing compared to how she reacted to the Alimta. Alimta can be the magic bullet for some. From watching Mom and hearing other stories here I also know it can really erode a person's strength, so be sure you talk often with her onc. about how everything is going. Praying for you and your Mama. Quote
recce101 Posted August 10, 2009 Posted August 10, 2009 I'm another one whose cumulative fatigue and shortness of breath have been increasing after a time on Alimta. I spoke to the onc about it yesterday and told him many of my Internet friends are having the same problem, so he's setting me up for a lung function test to see if there's some deficiency in the way the lungs are processing oxygen. It shouldn't be this bad, since my lungs sound clear and I can still inhale close to 2000ml on the spirometer. If we come up with anything I'll be sure to let everyone know. Ned Quote
ts Posted August 10, 2009 Posted August 10, 2009 Ned, I'm swimming and a bit younger than you and my spiro tops out around 1800! How are you getting up there? And keeping the other one in the middle range? I'm impressed. Quote
recce101 Posted August 10, 2009 Posted August 10, 2009 It helps to fully exhale that last little bit of air before inhaling. It usually takes me about 3 tries to get what I think is my best for the day. Note I said "close" to 2000. It's usually around 1800-1900, so maybe my close is not as close as your close. Ned Quote
jaminkw Posted August 10, 2009 Posted August 10, 2009 Susan, like I've said, my turn-around day on Altimta given all else controlled is day 6. If your Mom doesn't feel better today, she should call the onc. I don't a lot people appreciate how much it drains your overall confidence in fighting this disease when the treatment is knocking you flat. Please tell your Mom I've been there and know this is true even for the upbeat optimists among us. Tell her to hang in there and keep remembering, it's the treatment wiping her out, not the cancer. Judy in Key West Quote
fillise Posted August 10, 2009 Author Posted August 10, 2009 Today is day 8 from mom's ALIMTA treatment and she wasn't turning around. She called her Onc's office this morning and they told her to come in. The PA was shocked at how much weight she had lost in two weeks and by how bad mom looked (this is according to my dad). They are running some tests to see if there is something else going on. Her blood work wasn't abnormal so I think they might suspect that she has contracted some type of bug. They gave her IV fluids and want her to go back in the morning for more fluids. They asked her if she thought she needed to be in the hospital, to which she replied NO--not unless absolutely necessary. Which is good because her Onc likes to keep his patients out of the hospital if at all possible (he says they stay healthier). So, I will check with her again tomorrow to see what she finds out and how she is feeling. Susan Quote
SandraL Posted August 10, 2009 Posted August 10, 2009 I had a tough go of it as well Susan. It doesn't mean it is not working though. I hope mom starts to feel better soon. I rebounded somewhat between treatments. Sandra Quote
jaminkw Posted August 11, 2009 Posted August 11, 2009 Susan, so glad your Mom called the dr. I keep hearing so much about dehydration on this site. I never knew it could cause so much misery. Also, it's good they are checking for any other infection. I was sick for about six weeks this spring/summer (unfortunately in my case no weight loss) and still don't know what it was. Some kind of sinus/allergy/infectious bug. I finally got better but if it was the antibiotics, they took a full week. Everyone will feel better, I believe, including your Mom now that they are keeping an eye on her. We'll be waiting to hear. Judy in Key West Quote
jstdzy Posted August 11, 2009 Posted August 11, 2009 Sorry Mom is hitting a rough patch. Hope the doc's get her straightened back out! Prayers for Mom! Dana Quote
fillise Posted August 12, 2009 Author Posted August 12, 2009 Day 10 from ALIMTA and mom was hospitalized this morning. She is weak and SOB, can't hold food down (both ends are going). They are giving her fluids, will drain some more fluids tomorrow and possibly give her a blood transfusion. I just talked with her and she sounds a little bit relieved that someone will be taking care of her. Apparently she and dad had a very rough night last night with her being sick in the middle of the night and my father trying to clean it and her up. Susan Quote
jaminkw Posted August 13, 2009 Posted August 13, 2009 Susan, I think it's Randy who says that sometimes the hospital is the best place to be. I'm sorry your mom is going through this. Here's hoping they get her turned around soon. Judy in Key West Quote
fighting4mom Posted August 13, 2009 Posted August 13, 2009 Susan, I am sorry to hear of the rough time your Mom is having. I hope she can get the care and treatment needed in the hospital and be feeling better soon. Praying for you, Kimberly Quote
michellep Posted August 13, 2009 Posted August 13, 2009 Susan, I'm sorry to hear about how you're mom's feeling, but I agree that being in the hospital right now is the best place for her. I don't like when my husband is there, but the good thing is that everyone comes to you there....the docs....all the testing....even chemo. Saves the patient a lot of energy having to get in the car for all those office visits. Just take her some good food ok? Everyone loses weight on hospital food. YUCK Quote
fillise Posted August 13, 2009 Author Posted August 13, 2009 Michelle--that's exactly what mom said--she didn't have to get up and get dressed to go see the Dr. LOL! She got some platelets today, but they are going to try to get her nausea/diarrea settled before draining the fluid from around her lungs again. The Dr. said she should ecpext to be in there at least through the weekend. I talked with her a few minutes ago and she had, so far, kept everything down today. Keep your fingers crossed. Susan Quote
Caren Posted August 13, 2009 Posted August 13, 2009 Susan I am so sorry to hear that your mum isn't doing so well right now. I will be sending many positive vibes for a fast recovery for her. Quote
michellep Posted August 13, 2009 Posted August 13, 2009 "fillise"]Michelle--that's exactly what mom said--she didn't have to get up and get dressed to go see the Dr. LOL!She got some platelets today, but they are going to try to get her nausea/diarrea settled before draining the fluid from around her lungs again. The Dr. said she should ecpext to be in there at least through the weekend. I talked with her a few minutes ago and she had, so far, kept everything down today. Keep your fingers crossed. Susan Well, maybe I'll check myself into the hospital for some TLC and not have to get dressed too Although I hope I can get pizza delivery cuz the food is awful! Will your mom have the Pluradesis done because of all the drains? It sure helped my hubby a lot! No fluid since! Quote
fillise Posted August 15, 2009 Author Posted August 15, 2009 I'm flying up and the pleurodosis is on my list to ask about! Susan Quote
michellep Posted August 15, 2009 Posted August 15, 2009 Please let me know how it goes and I am sending my thoughts and prayers to you and Mom Quote
Barb73 Posted August 15, 2009 Posted August 15, 2009 Susan, Having experienced watching Bill on Alimta (for about a year) the fatigue is very real and does last a while following infusions, (but usually with a rebound). So very sorry that your Mom is having difficulty, but being in the hospital, where they can monitor, scan, and go into action, is best. Bill was in the hospital last October, 2008. Got up one night spitting up blood. Scary. Called the ambulance and they took us over to the hospital. They did scans, blood labs, and assessed him for anything untoward. He also had an "accident" re urine while there. We were both feeling very anxious. When he was released, he saw the pulmonologist to assess lungs and received a prescription for Spiriva. Although it was not what he wanted (being in the hospital), he has been fine ever since. I am praying that your Mom's problem/s are resolved and that your Mom (+ you and your family) will receive good news. Barbara Quote
kukla Posted August 15, 2009 Posted August 15, 2009 Susan - so sorry your mom, dad and you are going thru this! We've been battling dehydration now for almost 3 months. Glad your mom is somewhere where she can get fluids and has round the clock care. Although I'm sure it's hard on your dad having her in the hospital, it's probably better for him too. Glenn went on a Spiriva and Symbicort inhalers, which have really helped him with lung function. He has a spirometer and flutter valve, which he uses at home and in the hospital. His scores aren't as good as Ned's (go Ned!) but they both really help him keep his lungs working while he's stuck in the bed. Best to everyone! Kathleen Quote
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