No taxol.

[topeka]

Second round Tolkien. 2 minutes to really take breathing down. Heart beat weird. Got oxygen. Bright red and felt on fire. Kidneys bad pain and stomach. Pharmacist said my body seemed to be sensitive and had enough and was fighting back.

[Catharine]

Hi Topeka, so sorry to hear , our bodies seem resilient sometimes against all the odds. Keep going and I send my best wishes xx

[Fernanda]

Topeka, some people are alergic to taxol. But there are other drugs for ov ca, your medical team will choose something different for you.

Hugs, Fernanda

[TrishLey]

I believe this cam happen. I hope you are feeling better now. The ladies are right there are other options/choices of treatment. Xx Trish

[thesilent1]

I heard this could happen. Sorry its happened to you. As the other ladies said, the oncologist will prescribe another chemo drug for you. Sending you virtual hugs. Ann xo

[topeka in reply to thesilent1]

I need 2 more rounds, 3 days each, 8 hours a day, and the pharmacist is saying he feels just isofosamide will do at this point. I don't know. But my inner voice and gut feelings are screaming at me no Taxol and they have never failed me in 60 yrs. I will keep listening to them. Many huge hugs back!

[thesilent1 in reply to topeka]

I am not medically qualified. I do know however that the consultants have trained for years and would not choose to specialise in Oncology if they were not passion ate about treating us. It certainly isn't one of the easier specialties. I do believe it is best to trust the judgement of your medical team. I hope you feel better soon. Ann xo

[topeka in reply to thesilent1]

In Topeka, we have had a lot of problems with medical. Dr.'s being booted from hospital, going on to another, my friends wife died when her Dr. told her her pnuemonia was all in her head and insisted on it and she died. Things like this here are common and we all know we don't have the best care in small Topeka. I know most Dr.'s and so on mean well and I use to have the best long ago. I would though never just trust any one or team with my life and not question it, especially after what the pharmacist said. I know they know the meds the best and he was very worried my body took in took much being sensitive. I just believe we need to try to work with them but we have to be our own advocates especially when we know inside some is wrong and then thigns happen to add to it. My Dr. and team are nice, but they are not personally invovled and so I have to be my own advocate. Just wanting to share any other stories of taxol as the Dr. journals on the net are a lot of math, but loaded with much information so I also think we keep on learning.

[citrine]

That must have been frightening. Hope you are feeling better and that you will soon be started on an alternative treatment.

Love Mary xx

[topeka in reply to citrine]

I did just talk to the P.A. and let her know things have changed over night as I can't bend to get shoes on, too painful. Honestly yesterday she got very alarmed when I told her where the pain was and how there was NO order in the world this foul. I worried I have picked up a gangreen in the colon sort of if not kidney problems as it's right today on both sides of belly button and the button itself. I had a in law who did get that, and they hurt like me and kept letting it go. Finally got to the ER, too late! I told the P.A. who is also named Amy, the new things in case she needs to tell the scan people.

[MargaretJ]

Hi Topeka

An awful experience isn't it! Happened to me on Carboplatin! anaphylactic shock! I got over it and have had have had 3 more lots of chemo since. Good luck! I am currently on caelyx!

[charleee in reply to MargaretJ]

How are you on caelyx? Just had first round as I am now resistant to carboplatin. Had terrible constipation but feel not too bad now except for taste!!

[topeka in reply to charleee]

I was doing just taxol and isofosamide. Unless he adds some thing a lot less toxic then taxol it will be just isofosamide to finish out the chemo. I am thinking I don't want any thing else added maybe. Not enough time to do the real research needed. I saw the study too about people super sensitive to taxol and how out of 409 it took 7 to 10 yrs to get lung disease, ( Have asthma) bone cancer and liver cancer. Now I see why they like to use the 5 or 6 yr rule maker as a way to say things were great in that many years and don't like to go further. I will let you know if any damage was done due to the taxol when I get the scan on kidneys or if the surgeon messed up. She never checked her work! One lady in KC was in KU MED, a sweet girl, 20's, Holly, and I was telling my friend I'd never go to KU MED or let my dog go there for any reason and Holly heard us and cut in. She said she was telling her folks and husband she is going to die! Hospital kept saying it was in her mind. Finally they all saw she was hanging by a thread. So they got balistic and she got life flighted to the Mayo Clinic where they found she had a colon blockage and kept giving her stuff to make things set up like cement in it! I have since heard tons of stories about KU MED but for what I saw first hand, never would I want surgery there again yet some surgery can't be done in Topeka, too small, etc.

[topeka in reply to MargaretJ]

Sweeheart, good luck to all of us!!!

[Hidden]

Horrible - hope you're feeling better. I had it too with carboplatin. All the best x

[jennybutler in reply to Hidden]

I am on my 3rd line having same as you. How did yours go? I have to have blood transfusion on Friday before no. 3 as enemic did you become enemic? Felt shattered all month blood test picked it up even though I have been taking iron tablets for a month or more.

Love Jenny xxx

[Hidden in reply to jennybutler]

Hi Jenny - I'm not sure it was me you meant to write to....?

I had 2nd line carbotaxol - finished December, but reacted to the carbo even though it was fine first time around.

1st time around I had carbo on its own and did have 2 or 3 blood transfusions as all the counts got low.

2nd time I ate lots of eggs, liver and green leafies as well as taking Floradix and - touch wood - my bloods stayed okay.

It's all a bit of a mystery isn't it - how our bodies work differently at different times, how one person's reacts differently to anothers; not to mention the mystery which is dratted chemo!

You do need supplies of patience too for the blood transfusions. I was really surprised at how long it all took.

Best of luck with it all! Love Chris

[jennybutler in reply to Hidden]

Hi Chris thanks for your reply very helpful, I am on caelyx and its tough made worse by bloods not being right, have got spinnage eggs and toms. tonight yummy. Thanks for advice take care .

Love Jenny xx ps it was you I meant to write to.

[Hidden in reply to jennybutler]

Your supper does sound nice.

This is the link to the thread I posted originally about my regime...I realised I'd missed a few bits! (the search facility doesn't seem to work quite right).

healthunlocked.com/ovacome/...

Hope it's helpful xx

[jennybutler in reply to Hidden]

thanks for that.xxx

[topeka in reply to jennybutler]

I am getting close to that, although I stopped after 2 rounds of taxol. I am loaded to the gills with their supplements and my pharmancy has about all my money! There is only so much I can do and spending money hand over fist is not helping and the look at me and say "well do this or do that" I AM doing all I can! And buying all their script supplements and drugs and every thing else that now creates a clash. Now taking antibiotics today as for no reason portacath got very infected Sunday. I is throbbing.

[jennybutler in reply to topeka]

Sorry to hear this, you can get prescriptions paid as get from doctor as we are long term sick. ( untill immunotheraphy ) used to treat and cure OV such good things coming from trials and research. hope your feeling better soon.

Love Jenny x

[Hidden in reply to jennybutler]

Hi Jenny - Topeka's in the US so what we expect probably doesn't apply there. xx

[Snam]

To prevent allergic symptoms I always had to take Medrol for two days before chemo and one after. Even so the red rash and itch can be a problem. Since I was on Taxol as well as carboplatins I don't know which caused it. Perhaps you also need some kind of cortizone prevention. Good luck!

[topeka in reply to Snam]

They are against cortizones giving reasons it can cause a problem? The cancer pharmacisist flat told my Dr. I am in the system as very sensitive to "most" medicines, and I do mean most. He said my body absorded in 2 rounds what it should not have and is fighting back. It was not good to have tons of people giving me emergency help to breath, try to regulate heart, stop the kidney pain as if being ripped out, stomach, the works. He really was quit to put his foot down but up front he told the Dr. he thought this was not the best idea for me having seem my records. They gave me "tons" of meds round one and I had problems and breathing was gone pretty much for about 8 days, to the bathroom and back to the living room was like a marathon. They told me they can't always save those with emergency conditions as I had and that was when the pharmacist stepped in after round 2 which to where I had even more drugs in me before they started. Today the problem from Sunday night is getting bad, can't bend, really not good. Will put up with it and visit my eldery mother 82 with her church friend driving her when she should not be coming. But she wants to see me due to all this. I will then keep holding on best I can till bed and take pain meds and wait for test tomorrow. Unless I end up with the ER first which scares me. The one place I'd probably pick up the deadliest germs. I come from a medical family on both sides, and so am not unfamiliar with a lot of this, and yet some is weird. I showed my husband last night where I was so in depth reading Dr. journals that it actually said Taxol has a higher rate of problems in KANSAS where we live, ??? and did not go on to say why and I tried every way I could to find an answer and can't. Scary! And all of you on this site are in my many prayers and I do send all of you LOVE.

[Zannah]

How horrid for you! I hope that they've found something that you tolerate better.

Love

Zannah xxx

[topeka]

Thanks for the reply/support! Feels good to talk to people who know what I am talking about. I was given a 85% survival rate, confined tumor in uterus, hysterectomy, and bleeding caught it early thanks to fibroids. But the blood of course spread cells for about 2 weeks, the internal radiation 4 times they swear will stop the vagina from problems later on. I was due 4 rounds of chemo. Pharmacist there says he is positive isofosamide will do and doesn't want to risk me taking any more taxol and said I probably have built up not great stuff due to the severe sensitivity to it, well, could be, had problems since I joined here and now Wed going for test, then see the Dr. Thur. I pray it has not done damage to my kidneys as they are thinking! Wow, 2014 and we put the most toxic stuff in people still. Any one from England? I have pen pals. They target the target area first with radiation then chemo. So I'd of had the cells gone for sure in the vaginal cuff already if we did that here. My Dr. is "not" real up to date on Taxol. Had to look a lot up and does insist we are all textbook cookie cutters and so we should "all" be able to handle thingsthe same way, but we all know that is not true. Dig very deep into Dr. study/journals world wide about Taxol. Took me about a whole week of many hours and wow, I did not like what I found and to know they use things so lightly, but we are not them nor their families. I also found my Dr. was moved from one hospital to another and did not want to say why. Bothers me. What is every one using for trying to keep blood work best it can be? My white count really bottomed way out but I did not eat since last Wed. Here it is Tuesday! Just cold drinks. But when I have eaten I eat a lot of red meat, which seems to give me energy some how, protein, a lot of canteloupe, crave it, brunsweiger meat, not the best for you but will build the blood pretty fast so was using it. Veg, as in peas and corn only, frozen. It is day 7 and I still am hurting, still queasy, have compazine, and 10mg but it puts me out! I expect my mother today from back home as friends are bringing her, very old, frail, not well herself but she wants to come so can't take medcine or will be out when she gets here, 4 hours drive. Yet feel as usual like I will throw up any second. I do have Emetrol OTC which helps some if i sip it slow. I will probably do that. Grandson is also in town till the 28th and want to have quality time,but so far just the cancer center and now 2 more trips this week there, so tired and a best friend next door drives me and stays with me always thank God for her. My fiance works and just has to as we are about to go in debt on every new med they say go get that half don't work. My pain is mainly kidneys, groin area, vaginal area, stomach, abdomin, but what ever happened Sunday night was like a horse kicked me on the left side of my belly button. I never felt pain like that, and twice, they saw my urine looked bad and I get the scan. I am upset they were suppose to be testing urine for unseen blood all along and have not! Also found the surgeon was to due a full body MRI and colon exam before surgery and did not. She did not even want to see if the hysterecomy healed ok! I am one hour from her place in KC (KU MED) and she was upset that I would not go there and stay 3 nights in a row for 4 weeks for treatment and upset I said I will do lab work here as it saves an hour drive, GAS, etc. Gee common sense. Maybe it's all about how much money they get. My radiologist was not happy when I met her to hear I'd get blood work here rather then drive as well! Gees, they have one old old lady and man coming from Witchita (3 hours) for blood weekly, it could be done in Witchita and she looked so worn out!!! They see how sick and very tired the patients are and yet seem to act like every one should just feel great for what ever. Guess they'd have to be in our shoes to know. I did take care of my late husband who died of Leukemia for 2 yrs back in 94. I saw the same attitudes there. He was burned with radiation enough to get skin cancer and they said "Oops" that was it! He swelled huge, water puddled like a lake around him, his throat on down had many oozing ulcers, infections, and they allowed any one in his room sick or not, like the nasty janitor sneezing and wiping snot on his clothes and I said some thing and they said don't worry about it! I asked what about the gowns, mask and again they said oh not many really get sick, What, no immune system, sure no problem.........not! I have seen a lot and learned a lot and maybe that made me able to be ready to handle this for me. Cure, no that won't really happen I believe. The drug companies love the money they make off cancer patients and so do the hospitals and Dr.'s. I told my radilogist about a story and instead of feeling excited she made a face and said that would put her out of a job! Saw a boy 20 getting lab Monday and was about to face the Dr. as to his type of cancer and scans and if he will make it or not and what to do. He was terrified. I managed to hold tears till he was out of sight while having had talked to him about how he sure does much better then me at lab work as he nearly passed out. Standing next to him, my grandson 21, and I was so heart broke the 20 yr old was there with cancer and yet grateful it was not my grandson. News says 1 in 3 get cancer now and 1 in 4 die. Due to the population and baby boomers. Wow. Well that's about it fo rme right now. Will do what I can to get ready for my mother and pray she makes the trip ok. God bless all of you and thank you for replying and allowing me to be in on the conversations. You are all God sent to me.

[topeka]

Oh no, looks like I was on the IPAD again! It will not allow certain words. Tolkein is a writer. But it changed my email, insist my husband has a Ford Toronto, not Torino and on and on. Very fussy to type on and frustrating. I use mostly for research. At least it did not spell a dirty word to every one!

[Hidden]

Hi Topeka... in case you haven't realised this is a site in England.

I thought I'd better make it clear as you say something rather odd about what you understand to be standard care in the UK (if I understood you right about radiotherapy before chemo).

If I did understand you right, then this is an approach to cancer care in this country I've never heard of (not saying it never happens) but it certainly isn't the standard for OC.

Travelling for blood tests can be a big frustration here too! And there can be variations in care depending on where you live, although there are national guidelines and standards. But there are some worries we don't have here mercifully, like facing going into debt in order to afford medical care. Long may this last!

I wondered if you knew about the American Inspire site for OC?

It's a new day here in the UK and I hope when the new day comes for you it will be a better one.

Best wishes

Chris

[topeka in reply to Hidden]

Yes I do. Here in the states, when well, lol, I am into a lot of things. 3 emergency response groups, one medical, and chairperson for Topeka for Wounded Warriors Family Support and neighborhood watch leader. But my one hobby is pen friends around the entire world of which I have many. I am also a Cooper, don't have to tell you where that comes from. Out of all the countries in the world I have like 2 penapls from here and there and 7 in England. We actually get a lot of British and Canadians here for medical so they can get help fast, but they can afford the trip. I have had 2 friends come here for help. Many think we don't have free care, lol. I myself do have insurance. I have it through where my late husband worked and get employee rate and it's great, I love having it. My daughter and grandson do not, so they free. A big huge myth about health care here and acting as though people can't get help. It's too long of a story to explain why our government want others to see us in a bad light. Thanks for telling me about the radiation. My pen friends, including 2 who had cancer said radiation was always first! Maybe they had it that way and think they all do. I was not real sure on traveling. Most of my friends there, all but 2 have cars. The others ride bicycles and say that is good enough and trains and buses and will do the job. We have such open land here we can't do that. I don't like our cancer support groups. I don't go. They focus on breast cancer, all you see is pink, and the county even has pink toters( wheelie bins) with pink ribbons on them if you want one, and they hold tons of breast cancer events all year round and other cancers just get left by the way side. That makes me hard for me and others. I accidentally wore pink to the last chemo and ever one gathered quick to talk breast cancer where as before no one noticed me. I did not mean to wear it on purpose, and wish I had noticed so I did not. I support it too, but it'd be nice to be included in just having cancer and not push one kind ahead of others and give them a color, jewerly, events, and so on as this is not a time to feel left out. I have had 2 visitors from England in the past and plan to go there some day. Right now I just want to finsih treatement, 2 more rounds of chemo, the 4 back to back in 2 weeks time radiation and then done and get energy back for the holiday season. I do look at Dr. journel studies around the world and compare. I was shocked on one site the statement taxol was most deadly and bad in Kansas where I am! And it did not say why! It's the same drug so why in Kansas is it so bad unless we over use the dose maybe. I will never find the answer to that. Just was weird I saw it and when I showed it to my husband it kind of gave him the creeps and he asked what else about Kansas do we not know that we should. Creepy

[Hidden]

Maybe your friends had different cancers?

I've had breast too, so I'm a bit more torn than you, but there are certainly a lot more breast than ovarian cancer sufferers and survivors out there....

That's so right, getting around in the city is so much easier than in big open spaces.... we could manage without the car and really only use it for out of city trips.

I agree, it's like having one life when you're well and a bit of a struggle to keep it up when you're not!

Good to hear you sounding a bit better!

[topeka in reply to Hidden]

Yes I always knew what kinds of cancer friends had. Our family history goes way back for did we. I am the only one to have gotten cancer. I took care of my late husband for two years with leukemia. Will see Dr Thursday , get scan report , they want a stool sample. Figure may be a long talk with his love of taxol. But the cancer center pharmacist made things clear in my defense. Gave in and took pain and sick pill. Knocked me on My bottom but I now how a bit of loopy time which I try to enjoy with grandson before he leaves the 28th.