Weekly Taxol for Stage 4
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Spring - My two youngest grandsons arrived from FL on Sat. for a two week stay. My husband is worn out but he is in charge of all the things they want to do: hunting, BB guns, riding the tractor, building forts. I am in charge of the beach, movies, bingo, the lake and making sure there is enough food in the house. (I just pawned that one off on hubby too as he has to go to town for gas.)
I have a port but they still do blood draws from the vein.
I had terrible swelling of my feet and ankles when I first went on Taxol but I took parsley capsules for two days and it all went away. Don't know if it will help with some of the swelling mentioned here but it is non-toxic and I have used it for water retention for years.
Happy SE free Monday to all.
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Brigadoon, Wishing you endurance through the visits with grandsons! How old?
I like the parsley capsule idea, will try that for the minor but annoying swelling that happens mid week. You have three sons?! That deserves a medal. I have two, but there is a quantum leap between two and three as far as rearing boys in one's household goes.
Wigs: Paula Young has a web site from which I have ordered inexpensive wigs. I sent some back til I got the ones I was comfortable with. $35 to $49 is average for a lot of their short styles. I wore one for a few hours yesterday, around the house. I needed a wig liner, like a piece of nylon stocking, and that helped reduce itching. The votes are not in, but I think I will be able to wear them with reasonable comfort. Locally I found a thin cotton engineer's cap for women, which, if I wore hats, I would say is pretty cute. Its bearable, has enough volume at the crown to be somewhat flattering. I will try that as well. Bald spots are becoming hard to hide now, despite having some hair remaining.
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I also had my port turn into a one way port last week. The nurse told me that it was probably a small clot that was doing it and that it would be self correcting.
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that happened to me too. They got a nurse specialist to play around with it for a while and she got it sorted. I'm off to taxol 37 this morning and then I have to drive to my dads about 6 hours away as my step mother has had a bad stroke and my father who has dementia needs to be sorted into a dementia unit as he can't look after himself and she is unlikely to ever leave hospital. Sigh there's always something going on
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Shazza,
I am so sorry! On top of everything else! I hope you get something sorted out for your Dad. My mother had dementia and I know just how stressful it can be dealing with someone who has this illness.
Drive safely and I hope you are able to sort something out when you arrive.
Hugs, SW
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shazzim sosorryto hear about your dad and step mom .I hope you are able to get things sorted out . ijust had a port taken out and a new one put in had my first infusion in my new port today and it works great .one poke instead of 4 or 5 .didn't come home sore .yeah/ so im real happy with my new port,
love chris
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Shazza .... Fantastic news on your scans!! I'm soooo happy for you!! You have been through so much in the last couple of months.
So very sorry to hear about your dad and step-mom. Sure hope it all gets sorted out; life certainly can be lifey at times.
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No. 35 today. Neuropathy is very gradually getting worse but I'm still not dropping things or stumbling, can use keyboard and touchscreen. Onc said today that I could move to another treatment if I'm findind SEs too much as he doesn't want to leave me with permanent nerve damage. Aargh! I don't know what to do. Taxol is keeping me stable and I'm terrified of moving to something less effective. I'd prefer to have nerve damage and be above ground.... He said he might even put me back on an hormonal. Problem is he has gone back on his word before and I'm not sure if he's mixing me up with someone else. Anyway I'd prefer if he said what he considered the best plan for me rather than throwing it up in the air and leaving it nebulous.
SW, I was prescribed fucithalmic 10mg (fusidic acid) eyedrops for my eye infection which I haven't used. The infection is caused by taxol affecting my tear ducts and I'm now using artelec eyedrops to wash out my eye and hot water to clean it.
Glad to hear that everyone is doing well so far
Hugs
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Shazza, I'm so very sorry to hear about your dad and your step-mum. I hope you find a suitable unit for him and he settles into his new environment and that your step-mum is comfortable. Do you have anyone to share this new burden with you? Sometimes life is grim... Thinking of you {{hugs}}
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Chris, how did they decide to replace your port? I am wondering about mine, as it is seldom a simple, painless process to access it anymore. Did they just replace it or change the kind as well?
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MameMe
I had nothing but problems with mine from day one and then it just kept getting worse and worse and harder to access it they would have to poke me 4 or 5 times before even getting it to go in and then most of the time they couldn't even get it in . and I would go home hurting and then I got infection in it and was in the hospital and finally they decided to just replace it and they did give me a completely new one I now have a power port instead of a regular port . and man what a difference Monday I had my first infusion thru my new port and one poke it was in .didn't hurt at all it was worth it and they did it all at once .took one out and put one in . I was the sorest on the side they took the one out for a few days but well worth it . hope this helps ...love chris
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I am having my next infusion tomorrow and keeping my fingers crossed my port behaves. My problems started 2 weeks ago when they couldn't get the IV to run in and they had to push a flush in and out for about 3 minutes to get it to clear. Last week it would only run in but they couldn't draw any bloods on it. The nurses said it sometimes happens. They can look for a blockage with x-rays and dye. The radiologist who put my port in may have to clear it using what the nurse called "extra strength heparin" or by passing a line through to remove the blockage. Taking the port out and replacing it is regarded as a last resort.
Aoibheann,
I don't really know what to say about the neuropathy and treatment. When you find something that is working you want to hang onto it. If it were me I would ask my onc again about going onto hormone therapy, with the understanding that I was reviewed again in 4 to 6 weeks. I would want to know that I could return to taxol if the hormone therapy isn't keeping me stable. Sometimes we need to be our own advocates to get the best treatment. If you feel he is being vague, you need to ask some direct questions that don't leave him much wiggle room so he can't get woolly with his answers.
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Thank you, Chris. I go in for # 11 today, and will see how the darned thing works. Its been trouble the last few times. I think mine is a power port already. I wonder if Taxol over time screws up blood clotting or something, lots of people are reporting difficulties with drawing thru their ports all of a sudden. Sherlock is on the case!
Mame
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For what it's worth I've had problems with blood draws and the nurses say it's because I'm not hydrated enough and to drink loads of water the day before. They also get me to change position, leaning back, lying down. I've had no difficulties with infusions, fingers crossed. Accessing the port always hurts a little though. What do you guys use? We're given a cream called 'emla' to apply before coming in which is supposed to numb the area but doesn't work so well for me. Also what is a power port?
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I don't get anything to numb the skin above my port. They just clean it and go straight in. I have noticed that it sometimes hurts a lot more than at other times. I have been told putting a larger gauge needle in is responsible. They run out of the smaller ones sometimes.
A 'power port' is the brand name for a type of port manufactured by a company called Bard. Port-a-cath is the brand of a different manufacturer, Smiths Medical.
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Thanks for info, SW. I wondered what a power port might do....
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I have a Power Port and it's a port that can be used for IV contrast when you have scans - I love it, it's great! Helps to save my veins! Also, with the Elma Cream, I'm told to put it on the area 1 hr before the port is to be accessed, cover with saran wrap & the area becomes totally numb - works great!!
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Had me my infusion yesterday. No problems getting the blood samples taken or delivering the infusion so I hope that will be the end of my problems with the port.
Woke up this morning to a find some blood in my urine. This is the 3rd time this has happened since I started chemo for stage IV.
Has anyone else suffered from reoccurring infections on weekly taxol?
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mame,springwatch,I hope they can get your port issues taken care of ,its terrible to be poked 3 and 4 times and then not even being able to access it and you going home hurting .one of the nurses at the infusion center where I go she just said im not going to poke you anymore we are going to talk to the dr about getting this taken care of ..so she did and they set me up with a surgeon , was wondering has anyone been getting heartburn while on taxol ? seems like I get it more and more
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I have to take Pepcid, which I was given an rx for, on a daily basis. The heartburn got worse as the weeks went by. I don,t get much nausea, but I take Ondansetron immediately if I start to feel queasy, and it works well. I guess the thing is to get on the side effects as soon as they start, or to take the remedies daily. I tended to wait, thinking things will go away, but now I jump. Taxol is hard on the system, even the lower doses.
Thanks for the port info, I had no trouble with it this week, thank goodness.
So far, no infections noticed. Just a bad taste in my mouth for several days.
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I had a different nurse do my blood draws and infusions yesterday. She is very experienced. She was feeling for the port with her fingers and barely glanced at my chest while she was putting in the line. She was actually watching the window cleaners setting up there equipment in the car park! That is in contrast to another nurse I had who spent ages looking for the centre of the port then jabbed it into my chest. Boy did that hurt!
I have not had heartburn issues but I take lansoprazole to protect my stomach from the anti-inflammatories I take for my bone mets. The lansoprazole is also prescribed for GERD so it is probably protecting me from any heart burn.
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Chris, I take Esomeprazole daily. Among other things it helps prevent heartburn etc.
SW, glad to hear your port was accessed easily. I wonder what is causing you to have blood in your urine. I think you should phone your onc centre and tell them what's happening.
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MameMe - Having so much fun with them. They are 8 and 9 and are easy to feed and do what they are told cheerfully. We are lucky in that two of my sons live on the same acreage that we live on and they have activities planned for the boys also so DH and I get time to prepare for the next energy sapping activity.. One DIL has taken them to putt putt golf and then lunch/ice cream today. Tomorrow our DS and DIL are taking them on a hike. DH is taking them to the drag races tonight so that I have time to myself and I am taking them to bingo tomorrow so that he has the same.
Two or three, boys or girls I think every family establishes the rhythm that gets them through. My DH was career military and we moved quite a bit and it was during the VN War so he was gone a lot during the first 10 years when the boys were young.. The three boys were very close because they were the constant in their peer group and since I was both mom and dad most of the time they needed allies ;-) They are in their 40's now and still very close.
I looked at the Paula Young website you suggested and think I found a couple I will try. Thank you for the suggestion.
Has anyone heard from ShazzaKelly? I am wondering how her arrangements for her father and stepmother are going.
I am enjoying my week off infusions and have noticed less fatigue. Still have enough hair to cover. I don't comb it anymore but allow the wind (or a fan) to style it with the blown look. If I handle it too much I have hair all over my hands UGH.
I hope all port issues resolve. I just got mine a month ago and I would hate to go through that and have it not work.
Springwatch - I have had a couple of UTI's and periodically I will have symptoms for a couple of hours. I have upped my water intake to try to stop it. I do think it is a side effect of the Taxol or chemo in general because that is one of the questions on the weekly Q&A page my MO's office has me fill out at the beginning of each visit.
Next Wed will be my 7th time in the chair. What fun!
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So glad to hear that the little fellows are good kids, it makes such a difference. Your family sounds engaged and fun, am glad they help you out.
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I have had blood in my urine every time I have had an UTI infection. I am not that worried about it but I will ask my onc to have the radiologist who read my scans to double check. It clears up with antibiotics which I am taking again now. The onc knows about the recurring infections but seems unconcerned. I went to see my GP yesterday to get my prescription for the antibiotics and drop off a urine specimen. While waiting to be seen, I heard a woman behind talking behind me saying that she brought her daughter in the day before with some spots and the dr. had given her some cream but she was now covered with them and was really poorly. I looked around and she looked like she had chickenpox! I shot out of my seat and almost ran to the other side of the waiting room. I probably appeared very rude because some people gave me a look to say what is your problem?
I have nothing special planned for today. Unlike you, brigadoon, who appears to have her hands full with the grandchildren! Maybe a little bit in the garden as it is a nice day. I can manage about an hour in total with lots of breaks for tea and newspapers. It's a lovely day here and I don't want to be stuck inside.
I too hope Shazza has been able to sort something out for her stepmum and father. She almost certainly hands her hands full!
My mother had dementia although it never progressed beyond moderate symptoms. She died as a result of injuries received falling in the bathroom at her care home. Relocating her to care was a nightmare as she didn't believe she had a problem and was frightened of any change. But we had got to the point where she thought she was in her 30's again and couldn't always remember where she lived. She could not recall anything about my cancer apart from the fact that I had it and so each time I saw her I would have to go through it all again. She would only have to step out of the room for the conversation to have disappeared from her memory. When I pointed that we had just talked about it, she told me she couldn't possibly know about my cancer as this was my first visit in 7 years! She rand me up 6 in the morning once to tell me there was a chicken coming out of the light on her ceiling. But I think what finally made my sisters realise that I wasn't exaggerating when I said was she needed to be in care was when we discovered that she had let 'a man' come into the house and pack up some of her things.She then gave him £4500 to ship it to who knows where, although he probably kept her things and sold to pocket the money. We discovered the missing money from her account but couldn't get it back without knowing who she gave it to. My sisters never visited her and very rarely phoned so they had no idea how much she had deteriorated in the space of about 6 months. Sorry about the above but just thinking about this still stresses me out and sometimes it helps to write it down. It has only been about 18 mths since she died and dealing with my mother and the mess her estate was in was a nightmare. I only just got everything done and 3 weeks later I was diagnosed with mets.
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Springwatch- Your story of coping with your Mom's dementia makes me glad my folks didn't get that far. I can only imagine how stressful that was. Sounds like you were the sacrifice as your siblings must live away. Day to day care of a person who has been your life guide creates such complex emotions and just feeling guilty about not being there doesn't compare. Sounds like you were virtually abandoned to the task by your siblings.
My husband's mother was difficult and my wonderful sister-in-law was our sacrifice and saviour. She is unmarried and lived at home. We were all close enough to help but I am sure it wasn't enough. We are forever in her debt for it was very stressful
You must wonder if all that stress made you vulnerable to this disease. A gift to the one who has already given so much.
Thank you by proxy because I know you don't hear it enough.
I hope to get in a little gardening today too. Th weeds have almost won the battle but I am still hopeful. My lovely 24 year old Granddaughter is coming today and we love working together. I call her my Laura Borealis because she is so spectacular!
HaPpY SE free and stress free day to all.
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My port which didn't work last week for blood draws, works just fine now. I've had my port since 11/2011 and have had it accessed about once a month, either during chemo or just flushed when I wasn't on chemo. Everything seems port-ok now.
I would be interested in chatting with anyone who is on long term Abraxane, meaning more than say six cycles. I think my onc wants to go that route, and I of course want to quit immediately. I am NED as of early June [yeah!]. That was after my third cycle. I also had three cycles of Abraxane in 2011 (quit due to other problems, not Abraxane related, but requiring immediate surgery).
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Hi Guys I'm back from visiting down the line. My Step Mother will be in hospital for some time yet but is showing some improvement. She is paralysed down one side and her speech and swallowing have been affected. She has a large family so is well supported.
Unfortunately the day I arrived the Dementia unit my father has been moved to was put in lock down because of a vomiting and daihrreoa bug so no visitors and that did not change the whole time I was there so I never got the chance to see him, although he is well cared for and apparently not causing any problems.
I did get a fair bit sorted but not being able to see Dad made the whole trip seem a waste of time. I don't have a whole lot of leave owing to me so I don't know when I will make it down again.
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Alexgram I'm on my 13th Cycle of Taxol with no plans to stop while I'm stable. I'm not sure Abraxene is available in New Zealand. It's just a more modern version on Taxol isn't it?
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Shazza,
So pleased that your step mother has a good support network. That is one less thing to worry about. As you say, it sounds as if she will be in hospital for a long time and have a lengthy period of rehab in front of her.
What a pity you couldn't visit your Dad while you were there. Are you already familiar with the dementia unit he is in? You probably don't have a lot of options but I found it comforting to know that the place my mother was in was well run. No one could have foreseen the accident she had while there and I attach no blame to the care home.
Alexgram, I think abraxane is taxol but protein-bound to reduce the allergic side-effects. It is more expensive so I am not sure how many insurance companies or health services will pay for it, unless they needed to for a patient who is sensitive to the usual stuff.
Brigadoon, Thank you for your kind words regarding my mother. I lived closest to her so took on all the responsibility of care. I have two sisters. One of them came forward after the money went missing and it was she who found a care home near to where she lived. My other sister had a falling out with my mother many years ago and they had not spoken for well over a decade. A source of great distress to my mother. This sister refused to help but developed a keen interest in my mother's affairs as soon as she passed away. What a shame she couldn't have shown some interest when she was still alive. Oh well, you can chose your friends but not your family.
I don't think anything has been proven as a link between stress and cancer, but looking back over the time I had between my primary diagnosis and my recurrence i have wondered.
Lovely weather here today and having a pub lunch with friends so something to look forward to later.
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