Starting Chemo in November 2017
Comments
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rljes, i think it’s the baking soda and salt solution? i’ve seen some post about mixing salt and bakig soda in a container and then just putting that in water when needed.
don’t know the proportions though.0 -
Hope99....I can only reiterate what everyone else has said....stay off the Internet! In fact, that was the first thing my onco told me to do!! It will make you crazy.
Hope
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Rljes, 1/2 teaspoon of and soda bic to a glass of water. Use it 2 hourly with ulcers and 4 times a day as prevention. Also use an ulcer gel directly on ulcers. Take your temp if it gets to 104 you should see dr or go to emergency in case you have infected mouth ulcers. be careful, thinking
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That should have read salt and soda bi
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binniebin- 104? I was told 100.4, 104 seems awfully high to wait so long. You may want to clarify that.
Tina
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I am using the biotine mouthwash and so far no sores. I bought a couple packages of the really cheap toothbrushes since I normally use the spin brush and figured that was too harsh. Besides hair loss, mouth sores were my biggest fear. I’m trying to be proactive there.
Mkn86- the proportions I got were 3:1 ratio. To me that’s pretty strong but I guess they ant it that way.
Tina
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I only use warm salt water for a mouth rinse. I've never had an issue with mouth sores. I do rinse every time I eat anything throughout the day...plus, after I brush my teeth. Oh yes, I use the softest tooth brush I could find. My onco said if I got mouth sores, he would prescribe some kind of a prescription gel. So far, so good.
Hope
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Day 7
Oh wow, we are all having detailed conversations that I have trouble keeping up. Hope today is going good for all of you. I think I would feel very good today except -
Yesterday I knew I was constipated. Took stool softeners and they did absolutely nothing. So I went to bed thinking this morning I would make a strong cup of coffee and that should purge me. During the night hours, I kept waking up with abdominal cramps. Knew again I was stuffed up. So, when I got up I noticed every time I moved, I would cramp, break out in slight sweat - not good. Forced myself to drink the coffee, still no good.
So, thank God, I have several friends to call. I called the friend closest to the closest drug store between her and I, and on her way to work was kind enough to pick up a laxative. Let me say I’m never ever constipated. I bet only 3 times in my life, so this was one drug I didn’t think I’d need.
So lesson learned.
I drank the horrible stuff and then had the runs most of morning, but was glad I cleaned out my system and the cramps are gone. (A bit afraid to go anywhere - I might pick up some depends like a Rljes did for these unsure bouts). I went from one extreme to the other and back again.
So - not to upset anyone about to go through this, make sure you have a laxative on hand just in case you need it. I’ve had to take stool softeners after surgeries in the past, and they always worked. Don’t know why it didn’t this time. Just eating differently and chemo drugs. Everyone is different, this didn’t kill me, but I felt awful with the morning stomach cramps.
Otherwise still tired, but moving along - if you get my drift!
Oh, and next time I need to walk and move more.
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blair2- I was the same with the constipation. Told myself if nothing happpened by day 5 I was hitting the laxative, fortunately (or unfortunately) the big D kicked in first thing day 5. Felt amazing to be cleaned out finally, unfortunately it never stopped....doing day two of Imodium now. So far only one episode this morning and nothing since.Make sure you have the Imodium on hand just in case.
Feel pretty great today, went for a walk though a nature park trying to increase my energy. After an hour I was so beat. Grabbed some things at Walmart, found out orange soda tastes good. Yeah!! And grabbed me a huge platter of apples, grapes and caramel sauce....currently my lunch today! I figured I am down 7 lbs I can splurge a little
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Mom4gma3 - I took the laxative at 7:45 this morning and in 45 minutes it all started. (I hope it was the laxative working quickly, and not sudden Big D, or I’m in deep ....). I kind of wished I hadn’t taken the adult dose, but I was in pain. It wasn’t the gassy pain though one gets with diarrhea and I hadn’t gone in over 3 days, so I know I was constipated.So now I expect to carry on through the evening until the laxative wears off. I do have Imodium as I had to use it over the weekend twice. I thought maybe it caused me to become constipated in time, plus lack of physical activity. I have my white count lab tomorrow, I hope I’m on empty by then. It’s hard to pace yourself when you have no idea what your body will do.
The food looks good. I fixed myself an egg salad sandwich. Haven’t had that in ages. I’ve lost 5 lbs., not my choice of dieting for sure.
The good news is - no nausea - no bone pain - no fever - and I can breathe!
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All of you, thanks for your replays . it helped me a lot. this place is the best one to write my fears with sisters. and I am sure I will find someone can respond with me .
Actually, I asked my doctor about my stage and he told me Stage 2A, but we can not guarantee that (is their any chance to change?) ! why? I do not know, this answer put me in trouble with me fears. Also he asked me to start chemo before Sugary, this step made me fear, he said because you have two nodes involved. I do not know how much worst is that. Did ANYONE know ?
About chemo brain, I am happy to read all these comments, sounds its temporary SE, not something will stay forever with you. but still cry when I remember that, the internet had a lot of articles about that.
Finally, I will start CHEMO ( FEC+taxotere) in 6 cycles, then make surgery. is that keep me from metastasis and spread of my tumor, 2.5 CM, inside me?
About lawyer IntegraGirl , Thanks for positive replay. When I read the signatures of members here, I found FEC is mostly offered to triple negative cancer, a little bit for positive receptors. is that common chemo for triple negative?
rljes, I will send to you, thanks .
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hope99- the stage is really just size and metastasis, mine is 1A, it was 7mm when I found it, it was 1.6cm by the time they removed it. Still a 1A due to size but it had grown exponentially in 4 weeks. That being said mine is a grade 3, that tells you how many abnormal cells are visualized. Higher the grade the more abnormal with 3 being the highest. I’m HER2+ so I know that’s what’s feeding my tumor, so herceptin is the med they are using to block that. Lymph node involvement let’s you know if it’s travelled. Triple negative becomes more difficult because they don’t know what’s feeding it. The other numbers you get are the oncology score (which I don’t have) and your ki-67 which mine is 70%. That is the rate of growth. The one I had was growing extremely rapid. If I hadnt found my lump purely by accident, I would have been in big trouble. So stage really has little to do with the big picture. They removed all of mine, but if they missed anything it will come back, so I have to do the chemo.
Blair2- glad today is a good day today for you too (for the most part anyway). I wish I was getting my numbers today like I was supposed to but MO is on vacation so just watching for signs of low numbers. Today has been my best day so far, hoping we are good for the next two weeks.
Tina
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Hope99, remember to breathe.
You sound a lot like me. I was (still am 90% of the time) really anxious and worried. But worry is not going to help. Focus on the things that can help like taking care of yourself and preparing to get through this! You will be ok. Your cancer seems very similar to mine. When it was first found, the doctor said it was 2.5cm and there was a suspected lymph node. So they staged me at IIA. After a biopsy confirmed cancer in the lymph node and an ultrasound found a DCIS buddy next to the original mass, they sent me off to get a PET/CT. That ended up showing about 8 more lymph nodes including in the breastbone area and clavicle area so I was down graded to Stage IIIB. I told my oncologist I wasn't sure I wanted to see her anymore if she kept giving me bad news.This may sound scary but the good news is that the medical staff I am working with are doing their best to fully understand the full scope of my cancer so that they can best attack it. For me, the treatment is chemo first, then surgery, followed by radiation. The idea is that they want reduce or eliminate the cancer in the lymph nodes and the tumor first. So far, after 3 treatments, the tumor and original lymph node have shown reduction!
Although, your chemo drugs may be different from mine, it sounds like they might be doing something similar. And don't be afraid to ask your doc questions. If their answers don't make sense, tell them to try again. You got this!
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Can anyone tell me when my blood cell counts would be lowest on the 2 week AC treatment with neulasta support? I am trying to figure out when I need to me most worried about germs or getting sick from others?
Thanks
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mom4gma3, yes oops re temperature reading should have said 100.4 to the dr not 104. Sorry. Your numbers are similar to mine. Mines grade 3, ki67 is 80, I'm weakly her2 positive, so I'll only have 6 months herceptin but it may also be not very effective either. They think they found it early and that's why her2 is weak. Mine is also er pos which i see yours is neg. yours had a fast rate of growth, how scary. I had missed 2-3 self exams and was prompted when a friend was diagnosed. So lucky I didn't leave it longer. My annual mama and u/s were clear last December. Scar
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- Binniebin- I was horrible about self exams and at 46 I had never had a mammogram. I only found it because I was visiting my daughter in Nebraska last July and wrestling with my granddaughter and she elbowed me in the boob and it hurt. I put my hand there and felt the lump. She elbowed me on the exact spot there was a lump. Talk about irony. She has always been my baby now she has saved her Nana’s life because idk when I would have found it. It’s funny because my daughter got preggo with her at 17, she didn’t want her but I talked her into keeping her, raised her til she was about 2 then her mama got her shit together and now she’s an awesome mom, Ava is now 7 and has a baby sister Alivia that’s 2. Who would of thought my fate could of been decided by that decision 8 years ago.
- I have to do the herceptin for a year but in the grand scheme of things that’s a cake walk. I was so worried about how miserable I would feel and making sure I could work, but really the middle 3 days of the first week were the only rough ones. Hopefully that holds in the future.
- Tina
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Tina...What a beautiful outcome! I'm a firm believer that "everything happens for a reason".
Hope
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I haven't been on lately due to chemo side effects. I finished round 2 of AC on 11/28. The side effects where so bad I couldn't get to the bathroom without help or I would almost pass out. It got so bad I almost had my husband call 911. Today is the first day I am starting to feel better but I am still pretty week and have a headache that has not went away. I have stayed well hydrated(hubby has forced me to drink even going as far as waking me up every hour to do so) so know that's not the reason for the extreme weakness. I spoke to my oncologist after round one and told them how hard it was on my body and their answer was to give me 3 days of decadron to bring home which did nothing and round 2 was 10 fold round one. I am honestly considering stopping the chemo because it has beyond rough. When I am not sleeping which is basically 24/7 I am on the verge of vomiting and passing out. My husband has to go back to work at some point as bills are piling up and GoFundMe can only help so much. There is no way I will be able to care of my 6 little ones when he goes back when I myself can't function. This is rough. I am so scared to make the wrong decision but at the same time I feel like I'm not being listened too by the doctor. I am wondering if he may let me stop the AC now and see if taxol is easier on me or drop the A and just do the C and see how that works for me. Sorry I rambled I am just so overwhelmed.
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Shaneswife - Oh Crystal, your pain through all of this makes me so sad. It also makes me a bit mad at your doctors - even though they may be the best. I wish I could help you and had the right words to comfort you. The only thing I can think of if I were in your place, is to ask your doctor if a different chemo drug would tone down the side effects, even though you are triple negative and they obviously feel those are the only drugs to use. What would be the recurrence chances if they changed, and then base your decision from that. It sounds they need to give you a bit less of it - something has got to give. You shouldn’t suffer like this! This sucks.
No - you are not rambling - this is why we all cohort here! You say whatever you want. Please keep us posted when you can and I hope things will change for the better soon
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Thank you Blair. I will definitely keep you posted. I am considering taking another week to recover before doing the third round. Maybe my body just needs a break between the bilateral and now the chemo. I feel like my doctor's aren't listening so maybe threatening to stop the chemo(I am cancer free this is just extra insurance) will make them listen. I am tired of being tired and miserable.
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you are like me, my cancer is grade 3, I think the HER2+ also, according to knowledge, feed the tumor size. I do not have any idea about oncology score. only I have Ki-67= 70%. I think chemo working well in triple negative but do you know how the doctor check its performance in your body? ( ignor the size of tumor in your answer please because its common answer). How old R U ?\
I am sorry about your case, as you said we almost the same. Did you make Bone scan, CT scan and biopsy for auxiliary node and tumor BEFORE THE DOCTOR TOLD you you are in Stage 2A and 2.5 cm? or you did the previous tests after Clinical examination ( physical test ) ?
most of the doctor identify the stages after many tests, conversely the others identify it from the beginning without make any test and this is not accurate. because CT scan can catch the nodes in breast node with assistance of biopsy to diagnose the situation .
I hope FEC working well as well as AC in your protocol treatment
I am sorry, why the SE appear like that with you? I think it should not be! DO NOT TRY to think about stopping the chemo, its working well with triple negative and no more options in your case. ask your doctor to reduce the dose or find some solution to this issues. Also I read someone here, I do not remember who wrote that, face a lot of problem in her neuron system on feet. and she stooped chemo due to this problem . I do not know if this problem is a common or rare SEs. so sorry and I am sad to hear that. my chemo on MONDAY
how many cycles you will finish ?
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Shaneswife - I agree with Hope99. Triple negative requires chemo. It is the most aggressive form of breast cancer, with high rates of recurrence. You have 6 little ones - and they need you to be here a very long time. This may be horrible, but it isn't forever. Ask for help. Friends? Family? Find some people you trust who can come over while your husband returns to work. People want to help. Just let them know what you need. Ask to speak to the social worker at your chemo center - or talk with your oncology nurses about what you need. They can make referrals. Other resources are in every city.... check for connections through Komen. Ask people to help you find the resources, if you don't have the energy to do it yourself.
Hugs to you.
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hope99- I am 46, as for checking the performance, I was told that they could do a head to tow PET scan and still miss a cancer cell which is why I have to continue with the chemo. I’ve contemplated many times not doin the chemo since they believe they removed all the cancer and my nodes were clear, but I decided it isn’t worth the risk of something getting missed.
Tina
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I am well aware triple negative requires chemo. I am 2 cycles in. #3 is supposed to happen Tuesday. I am cancer free and the chemo is adjuvant. My oncologist even gave me the option before starting chemo not to do it as I was single focal, node negative, and no lymphovascular invasion. I had my whole breast removed(bilateral 9/18) before starting the chemo. My blood work(cancer markers and all) is in normal range and all my scans were clear(CT, MRI, Bone scan, x-ray) so it is really a matter of the very small(my oncologist words) chance that a stray cell slipped through. I have made it through 6 natural child births without so much as a complaint but the chemo is pure hell. Nothing is combating the side effects and I can't even care for myself much less my children. If I still had cancer quitting wouldn't cross my mind but the fact is am cancer free and this is just "in case" makes it hard to justify the horrible debilitating side effects. If things don't change I have to choose what is best for myself and my family. Bills won't pay themselves and my hubby has to return to his 13 hour days at work at some point and as it stands I can't care for myself or my kids if he is gone all day. He has to help me even walk the 25 feet to the bathroom because I continually black out and come close to fainting. Finding someone I trust is pretty hard considering I live hours from my family and have no one nearby other than my husbands family who neither of us trust to help and I have fairly bad social anxiety so am not the kind to make friends(when I do finally let people in they end up being fake and trying to go after my husband) so that's not an option. Daycare isn't an option either since it will cost thousands a week. As far as caring for me not to many people want to take on 6 kids much less a 32 year old woman who needs to be woken routinely for meds and to be reminded to eat plus walked to the bathroom(because of the horrible side effects). I am by no means taking this lightly as I have lost a lot of family from breast cancer the most recent being my cousin who had TNBC and passed the day after Christmas at 35 in 2016. I have checked so many resources and can't seem to get any help so we are really putting on a precarious balancing act at this point. If my oncologist won't listen to me(they haven't yet) then eventually my only viable option will be to stop the chemo and get back to normal life. This is a lot to go through for only 4% risk reduction. The chemo is more likely to kill me than the risk of recurrence. I didn't even mention the chest pain, shortness of breath, extremely fast heart rate, and my heart jumping and skipping beats since round 2....the side effects I am experiencing can't be healthy
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Oh my god! sorry about that Crystal . this is the first time I hear something like that, I know a lot of patients did chemo in 59 and 64 years old with a lot of problems in heart and kidney functions ! you still young, 32 years only! why all these side effects appear in your case? you should find answers through doctors and try, as much as you can, to complete this course to avoid any recurrence in the future. you have 5 boys and you should stay a life for a long time for them ! one more thing, do not trust too much in tumor marker please, some times its fake .
Finally, sometimes the childbirth make our body more weak, specially if you do that continuously without break at least 2 years.
Hope you will be fine
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I have done some research and am considering doing just the cytoxan and dropping the A. Then doing the DD Taxol. I think a lot of the side effects are from the A. I see a lot of people doing just the C and T so I know it's a viable option. I am not holding much stock in the marker test but more so in all the scans and the pathology reports of my nodes and mastectomy. I was doing monthly self exams and didn't find anything in July(neither did my gyno) and in August is when I found the mass so it's likely it had only just begun which makes me even more hopeful that I will remain cancer free. I definitely have a lot of life to live and I want to be here for my 5 beautiful girls and my baby boy. I am not planning on stopping treatment but more so using the threat as a tactic to get my oncologist to finally listen to me after all we are our own advocates. I can't help but feel like the large kickback doctors get from each round of chemo is a reason they are so pushy about putting even us early stagers through it.
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shaneswife8, I really feel for you. I cannot imagine caring for little ones with what you are going through. And hats off to your very supportive hubby. Is your clinic able to provide any support for you at home. Shame on your dr for not listening! Oncologist should be caring and empathetic
I feel that your heart symptoms warrant a Call to 911. They can do an ecg etc and blood tests to check your heart out. And they may be able to fix your extremely fast heart rate, which then would most likely help your short of breath. If your hearts going fast it needs extra oxygen, so causes you to be short of breath. Maybe a smalll reduction of A would help.
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I spoke with the nurse and she agrees stopping the A may be a good idea. We will be discussing it with the doctor on Tuesday. I am hoping he agrees as I can't continue to live like this. The signs are pointing to cardiac toxicity which means that the A is causing damage to my heart.
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Doctors do NOT get kickbacks from chemotherapy. That suggestion is offensive at best.
I am sorry you are having such a rough time. I don't know if you have considered seeing a counselor to help you with all this stress - but it may be worthwhile. And if you aren't happy with your current oncologist - by all means, seek out a second or even a third opinion from another doctor in a different practice. You may find a doctor you trust more.
I wish you all the best as you deal with your side effects and make these difficult decisions.
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Meowmmy65 - wasn’t today your first treatment? If so, how did you do? Do you sense some relief getting it finally started? Now you have to pace yourself day by day and hopefully not suffer like some of us have. Some don’t seem to suffer much at all - well, thank goodness. I’m amazed how the side effects are varied among us, even though we are on different chemo cocktails, but many the same. Keep us posted with your journey.
We all certainly hope Crystal can work with her doctors and find some serious help with her situation.
I actually feel normal today, except tired a bit. Constipation is over, belly feels good, and I had very good blood count report after my lab today. This was my Day 7 after chemo. I never had nausea, but religiously took the anti nausea pills for 4 days. I had bone pain, fever, little diarrhea, constipation (I’ve learned what I’ll do a little differently after next treatment about taking Imodium and that awful laxative), never had metallic tastes, and food tasted good every day except I did lose my appetite some. That’s about it for me. Now comes the hair loss, but nothing happening yet with it. Next chemo is set for Dec. 22 - will be sick for Christmas- oh well.
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