Starting Chemo January 2015
Comments
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Thank you ladies for your support and SweetHope, you are so loving and straightforward at the same time. I love you and I really appreciate everything each of you have to offer me.
It is very difficult to ask for help from anyone especially the one man who should know you best. We have need married for 24 years and he still hasn't got a clue how to help me without me saying something to him. There is something wrong there. My sister in law says she is coming over to cook dinner and clean but when she comes over she brings her family of 5 including herself and I end up cooking most of the meal. The other day she had to cut the potatoes because I didn't have the strength to do it but that's pretty much all she did for the meal. I even set it out after it was finished cooking so everyone can eat. I don't know why she was there really other than to get a free meal for her family. Maybe I should shut up and just be grateful she even came over to help at all.
I will talk to my MO tomorrow and I will call my insurance company again. I am driving myself crazy and I don't know how to stop taking care of other people.
My children are old enough to make some meals. A lot of meals actually by themselves but they again rely on me. I know the this is my fault and I need to make them be more independent.
Again, thank you all for being such a great support team for me.
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Cat, here is a suggestion. Go back to your bedroom and shut the door.
Read a book, do a crossword puzzle, take a nap, but don't come out of your room until dinner is served. Better yet, let DSIL bring you a tray! (And be sure to leave the sponge and mop in plain sight for her.)
My DH of 26 years is intelligent, resourceful, and a man's man...yet he can't find butter in the fridge. I am sure that while you are trying to rest you will have many questions yelled to you on "where are the forks, and what do I do about this spill on the floor?" Ignore them! They will eventually figure it out. What doesn't get done doesn't matter anyway.
A light bulb will go off. Your children will respect you more...and more importantly, they will respect themselves more. Your husband will be able to brag on how much he is helping. And you will get the much needed rest you deserve.
And thank you for your kind words. I was afraid I was coming off as patronizing and I was leary about hitting the submit button. Then I crossed my fingers that you would understand that the tough love was coming from a place of caring and concern for your health. I understand your situation and it is an exhausting job being a mother and wife...throw in cancer fighter, and you really are in a fix!
So remember, go rest in your room...(they won't burn down the house). And ask your DH to rub lotion on your feet while you DSIL works in the kitchen.
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mommacat, I Am in the same boat as you regarding our husbands. He thinks just because he works that he has done his part in helping and shouldn't have to do anything else. When I still work 40 hours a week and take care of everything to do with our house and 3 kids. I even ended up in the hospital a few weeks ago for 5 days, neutropenic and with the flu and ended up getting a transfusion. I told him I was tired, but he didn't believe me. he just dosn't get that when I tell him I am tired that I really mean it.
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I'm pretty sure that's just a guy thing where you have to spell it out for them. Most men really suck at mind reading even when it seems totally obvious to us.
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Thanks ladies, I only have one thing to say.....
Men, what do you do with them? Lol.
Thank you all for being my bc sisters and support straps. I couldn't make it without you.
Oh, saw my rads dr today for the initial consultation. I go in on May 20th for my markers and treatment plan and I will start rads most likely on June 8th. That will be a week after my last chemo. The really good news is I was told prior to today I needed 34 rounds of rads. This dr said I only need 28 rounds. Yeaaaaa. ...
take care ladies
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Sweethope-you are so awesome and wise! That was some of the best, kindest, most honest advice I have ever read.
Mommacat, I started seeing a counselor today. I found her by looking in the directory of my insurance web page. She is "in network". I looked at a few people, read their online profiles and called a few of them up to talk on the phone before making a decision. She is a licensed family therapist. I spoke to her over the phone and liked her before making an appointment with her; she was smart, compassionate, and seemed to understand me. She was not in a rush to get off the phone but wanted to gather some basic information about me. Those are qualities you should find in a good therapist. She has experience with breast cancer survivors, but a therapist will be able to help you in all areas of you life because it is all connected. I encourage you to try this. You write about feeling overwhelmed and need someone who is completely on your side and can help you navigate through all this tough crap so that you can take more time for yourself and your healing. Which you so deserve. Please private message me if you want to.
Anyhow, found out today that I have the BRCA2 gene mutation. So. And I told my onco doc that I wanted to stop Taxol because of the neuropathy. I have a total of 4 treatments. So. I will have to have another bone scan to see if the spot on my rib is gone. I am learning to let go of my fear. I want to live fully each day whatever that means to me in the moment. Right now, that means having a chocolate Haagan Daas ice cream bar and taking Otis for a walk on this beautiful spring day. I hope everyone continues to heal (I had thrush too, Jenn. That wan NOT pleasant.) For those of you having a much better time with Taxol infusions I am really happy for you. Especially for those that suffered on A/C. Gives me hope of feeling better again.
Tennisfan, you may have written about how your first treatment went but I get lost in the post sometimes?
Good night brave women.
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Dstar I'm totally rooting for you that your spot is gone and hope you can quit the Taxol. This weekend I went to a birthday party and one of the guests wanted to talk to me. She has been dealing with cancer for some time. Her chemo stopped a year ago and she is still dealing with the side effects of Herceptin and Taxol. She is still on steroids. Her eyesight is bad, her neuropathy is awful, she is still weak and still has chemo brain pretty bad. I think it helped her to talk to someone who understood the reality of being tired from walking across a parking lot or feeling faint just from standing. My heart went out to this woman and it also made me all the more glad I made the decisions I did. All of us are different and must choose what is right for us, which may be wrong for someone else. I'm grateful I had a choice in the matter.
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Dstar, Thank you!
I am preparing to get my first of eight weekly Taxol in two hours. After the pain of the DD Taxol I had two weeks ago, I am very apprehensive. I'm hoping that by NOT having a Neulasta shot the pains will be less. I'm so jealous of you all that have ended your chemo. (What a dilemma, I want to stay healthy enough to continue chemo, yet deep down I would love an excuse to quit!)
Brandi, that woman at the birthday party broke my heart...and scared me. Yes, you made the right choice, but what a tough decision.
Just needed some levity now. This was taken a month before dx. We were on our way to our Mardi Gras Krewe's Halloween party. The theme was superheroes going to a toga party. I was Storm, and Tom was Flash. Sure miss the silly days.
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BTW, Anyone else with lymphodema now? I'm waiting on my sleeve and gauntlet....can't wait to wear that this steamy summer. I've had two lymph massages and my arm lost 7.5 cm of girth. Yeah!
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Hi mommacat4…about the swelling, I saw MO on Friday and discussed the swelling in my ankles. She did not seemed concerned, said it was a SE of taxotere and I should buy some compression socks to help. Have you talked to your MO about your swelling? That just sounds incredibly painful!! I was told to watch out for redness or pain as a sign of blood clots.
As to your other post...SweetHope gave you **excellent, wonderful advice!! I hope you are taking it!!
Love the toga photo!! --Lorie
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Yay Sweethope! Is LE temporary or permanent?
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Brandi, LE is forever! Damn!
Hi All! I had an allergic reaction to Taxol this morning. Very scary! I'm back to Abbynormal now..Whew! So no more Taxol and maybe no more chemo. I will see MO on Friday.
Word to the wise: if you begin to feel the LEAST BIT DIFFERENT during your infusion, get the Chemo Nurse right away. (As soon as the Taxol drip reached me, I felt my heart get "heavy" and thought maybe anxiety, but within one more second I was very tight chested, face red, blood pressure up, and lower spine in spasm. I had four nurses immediately there with oxygen, stopping chemo, one shot of something, then a big shot of Benedryl followed by another Benedryl five minutes later.). Again, do not hesitate to call the nurse. Things can go south at any time (this was my second infusion of Taxol and a lower dosage, too.)
Maybe I shouldn't have written that I would love an excuse to quit chemo. Be careful what you wish for, duh!
XOXO, Becky
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SweetHope, I am so so sorry that this scary reaction happened to you. The disease is bad enough, the SE can be worse I found. I hope you feel better this evening, and no more worries. Good luck with your decision, we all struggle with them. Take Care, Cheryl
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Thank you so much Cheryl. Doesn't this just suck?! I hope you having some good times while on your mini-vacation from chemo. If I could, I'd be driving up to your place, honking the horn, saying "come on, let's hit the road and go see some sights!" Who knows, maybe this time next year.
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SweetHope - let's go now! We could meet halfway North meets South. Come up this Fall, Ohio is beautiful when the leaves change, just before the snow, wind, and ice gets here! We have 32 degrees on the way, and they said the snow word in the forecast.............ugh!
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Cheryl, What fun! I'd love to see the fall colors again. My DH is on Lake Superior right now and he said it was snowing and sleeting this morning. So watch out! Here, it is forecast to be in the mid 80's the rest of this week. It probably will stay hot from now on.
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Sweethope, that must have been so scary. Hope you are feeling better now.
I read the comments on husbands and I think I'am quite lucky, cause my DH actually helps a lot. Cooking though he tried, but finally we agreed that he could better do more of other chores and I the cooking. That's fine because cooking is the thing I like the most
.Noor
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SweetHope I am so sorry about your reaction. That is scary!! Glad the nurses were right there! Wonder if you are just allergic to Taxanes in general or what happened. Let us know!! I finished chemo and am feeling better but I have no reserve and get tired so fast. Trying to get ready for MX on May 4th.
Love to all my Chemo sisters.
Who else is getting surgery besides Brandi and I?
PMR53
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PMR, I did some snooping on Dr. Google and found out it only occurred 2% during trials...and occurred within minutes of starting first or second dose.
So happy you are finished with chemo. I hope each day makes you stronger. Just remember what the rest of the animal kingdom does when they are ill or injured...they find a safe, comfortable spot and sleep. I plan on doing plenty of that this week.
Sending positive thoughts for your very successful MX on the 4th.
XOXO, Becky
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SweetHope
I am sorry you were part of the 2%. Figures one of us would have this.. Or peelin feet or thrush or..... One of the many SE we have had through chemo hell.
I love what you posted a few days ago about going in your room and shutting the door. They won't burn the kitchen down. Since I do 99% of shopping and cooking it will be interesting after my surgery. I do not want to overdo it and will cook a few meals and freeze before, do some take out and also have a few meals brought over. My husband can bbq and that's it. I am going to do what you said!! Good advice. My kitty curls up next to me and has since January. She knows we need rest.
Also I wanted to add my mom has worn a compression sleeve for last 10 years. She buys mostly 3/4 inch sleeves on most shirts. I know it bothers her and it's annoying. I am sorry for everyone with lymphadema. My Mom is pretty stoic though. When she went through AC and Taxol she rarely complained. I now realize after going through chemo, just because we don't always verbalize our pain, or how sick we are it shouldn't be minimized.
Brandi999 how are you preparing for surgery ? How are you feeling?
Dinner tonight was frozen Tilipia with a can of diced tomatoes, lemon and seasonings. Throw it in the oven 15 min. Easy and healthy. I found some good recipes off Pinterest. I run out of ideas sometimes.
Love to all. Sleep good!
PMR53
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Wow, SweetHope, glad you are back to Abbynormal. Yikes. Lymph massage is amazing, glad it helped you. Did you have 29 lymph nodes removed? Or less, I hope.
Thanks Brandi for the good thoughts. I am on a 4 week break now from Abraxane (another kind of paclitaxel and what I started taking as alternative to Taxol). Then I will meet with my onco doc to evaluate the neuropathy and maybe do 4 more treatments. I am leaning toward not. Ready to start healing. Signed up for gentle yoga in May and a class on what to eat to deal with fatigue in June.
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Noor, you have a new avatar with two beautiful horses, but, again, the pic is so small. Please post the enlarged picture. I sure enjoyed when you did that before.
PMR, please send your DH to teach my DH how to BBQ. My DH can only make hard boiled eggs and ham and cheese on wheat. No kidding. He can inspect a Gorilla Rig in the Gulf of Mexico and find a loose bolt, but he can't find that butter. Hugs to your Mom.
Dstar, yes I had 29 nodes removed...27 were in a cluster near my arm pit. I was so glad to know they were negative, but at first I was angry that they caused LE. I have since learned that I could get LE from just the 2 nodes removed in my breast. Thanks cancer! I hear your "Ready to start healing" loud and clear.
I searched BCO for others who had a reaction to taxol. I think I found six. Several had a different reaction and actually restarted their infusions once they were stable! I was told Taxol was over and be sure to always list it as an allergy. I think I have a little PTSD from this scare as I couldn't stop reliving it and questioning each step in my mind. Maybe it was the premed steroids doing it, but I just couldn't concentrate on anything else. I'm still obsessing over the panic I felt when I thought I was losing consciecness. Sorry, but it still brings on tears.
I think I'll try yoga, too.
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Yesterday the news was reporting on genetic testing for $249. Just read this new post and wanted everyone here to see it:
JohnSmith wrote:
This information was posted in the "Clinical Trials, Research Studies, News" section, but since some never venture into that portion of the forum, it warranted a thread here.
A California based start-up called "Color Genomics" (or simply "Color") is offering a $249 saliva test kit for breast and ovarian cancer.
It analyzes these 19 genes: ATM, BARD1, BRCA1, BRCA2, BRIP1, CDH1, CHEK2, EPCAM, MLH1, MSH2, MSH6, NBN, PALB2, PMS2, PTEN, RAD51C, RAD51D, STK11, TP53.
The test includes the CDH1 gene. Like the well known BRCA gene, CDH1 is a "tumor suppressor gene". Without this gene, a cell has a higher chance of mutating. CDH1 is responsible for encoding the E-cadherin protein. The hallmark of Lobular BC is the lack of E-cadherin.
Color is not yet able to ship test kits internationally. Within the U.S. they can't ship to Florida, Maryland, New York, Pennsylvania, or Rhode Island, as each state has different regulatory requirements around genetic testing. This may change in the future.
As a side note, my wife had the same exact genes tested last year, but spent over $2000 out of pocket, since insurance only covered a portion.
Color Genomics website. (Either go to new articles for link or google it. It won't work on this copy.)
Media articles:
Startup Pledges To Cut Cost Of Breast Cancer Genetic Testing From $4000 To $249
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I think if you live in one of the states listed, have the kit sent to a friend to forward it to you. I'm doing that for my niece in Florida.
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I learned about the testing in a Facebook article yesterday. I am jumping up and down for all of you who were denied the genetics testing opportunity before.
On a different note, sorry for what you went through yesterday Sweethope. It is traumatic indeed. Now it won't happen again to you. My turn to hold your hand and comfort you. Thank God the nuses are trained properly.
I hope that with time your memory erases this.
Dstar, thanks for asking. Somedays I feel guilty to report in because I am so lucky so far... Including no Taxol side effects. Not sure how to explain it, still waiting for something to happen. Sometimes I am afraid chemo is not working on me then I look at my bald head and that reassures me.
My biggest SE was heart burn but I haven't felt it since after my first AC. I will always remember advice from Beachbum saying that sometimes we get to despise food we love: well after that first AC I had a huge (mexican) salad for lunch and burped it for 36 hours straight. Couldn't even sleep!!!
So saturday I had a savoury crepe and it was served with a small green salad. I miss salad so much so I thought surely I could try a leaf or two? Well I kid you not I burped my one leaf the whole day. Done with salad for a while. Not trying again for at least 12 months. Not sure how I will survive summer and hot flashes eating pasta every night lol. The doctor says it's the meds that make us crave the carbs.
I have enough hot flashes for an army however and it will last way longer than chemo SEs so there, I feel (a little) less guilty now.
I want to thank whomever said that great chemo response is also good to report. It made me feel better!
Finally, I have to confess that I confused the words first responder and first aid - I thought it was very weird to get all this praise just for learning to do CPR etc for two days... Then it dawned on me so I wanted to make sure to rectify what I said. Are we still friends???
I can hear you laughing all the way from here!!! I nevertheless went and bought a whole bag of first aid supplies and gave some to both my sisters with a few important explanations. You should have seen the cashier at the pharmacy - She thinks I am a compulsive shopper because I bought three of everything lol.
Enough for today, really.
Bonne journée les amies!
Marjo
Ps. RVgal, is Bailey a Goldendoodle? My sister is in love with your dog.
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Marjo, you are still a Rockstar in my eyes! It's wonderful to read about how well you doing. No, I did not giggle when you burped for 36 hours. That's a real SE! Have you tried Nexium? It is OTC now in the US, but if you can get a prescription from your MO it might be cheaper.
Thanks for holding my hand. It sure does help.
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I already read the post on the genetic testing, but since it is not sent abroad, no good for me. On the good side I will have genetic testing done due to family history. Made an appointment, but the demand is so high that it will be 16th april 2016!
Sweethope, here is the picture:
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Noor, thank you. Now I can see the smile on your face.
I'm afraid the demand will be very high soon, so I ordered mine this morning. I hope they are prepared for this onslaught here in the US.
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hi sweethope, I am happy to hear you are ok after your scary reaction to taxol! When I was doing taxotere I was told if you will have any sort if reaction it is usually on the first or second treatment so I had to wear a blood pressure monitor during those treatments. I asked to wear during all as you never know what could happen. My boss had kidney toxicity during his 2nd round with one if the taxane drugs (not too sure which one) but ended up in the hospital for 3 weeks. Unfortunately his cancer didn't respond so he had to go back for more chemo another taxane; they monitored him very closely but he has been doing great with the chemo!
I understand wanting to be do e as I felt like that after my first treatment, chemo is not easy and you ladies are all so strong! I sometimes avoid posting as I am done chemo and don't want to take away from the struggles everyone has been having.
I had my PICC line removed yesterday, I'm sure I was their most eventful patient as I was already anxious about having it removed (which I dont know why it's a very simple thing), my vein was contracting not allowing the line to come out and the nurses were talking about how they have no specialists in the building to assist (freaking me out further) and then I had one hell of a hot flash; all at the same time. I told the nurses I thought I was going to pass out as everything (sight/hearing) became very fuzzy. Well low and behold I wake up on the ground with about 10 other nurses/ doctor in the room, with absolutely everything strapped to me (heart/blood pressure monitor, crash cart was there also) Guess they called a code blue!! I was only out for about 10-15 seconds (man they are fast!!). As soon as I came to I was joking that I gave them fair warning. All my vitals were normal and I said I was going to drive myself home as I was there by myself, well the nurses were having none of it, so the doctor that responded said he'd take care of me. I was answering all his questions (and even some medical questions the nurses couldn't answer) so he wasn't worried about me. He bought me a coffee and made me stay till it was done and then let me drive home (after about an hour).
What kinda day would it be without me making an ass out of myself.
I took my first tamoxifen pill last night, so far no problems! I know it's only one pill but I hope it stays that way.
Wishing you all the best and hopefully some good weather! The weather has been very bipolar here, nice one day cold the next. I can't wait for summer and a steady stream if got temps so I can go fishing.
Teri
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Noor that is a beautiful photo. You and the horses look happy and peaceful. IBC is really tough from what I understand. I read your posts and always hope for the best for you!
Marjo, I am also happy you are doing well; it lifts my spirits. I think with breast cancer, at least with this group of women, misery does not love company.
SweetHope, I also read (I think it was on the drug manufacturer's web site) not to re-challenge a patient with Taxol if they have a severe allergic reaction. But, my onco doc said if I had that reaction, I would be pre medicated again with even stronger drugs (Yikes!) and given the infusion. I don't know, be really careful if you get another Taxol infusion. If you are scared, which is completely logical with a reaction like that and crying is a normal response there is no need to apologize for
you may have a full-blown panic attack. I hope they will give you a sedative like lorazepam in your premeds to help relax you. And having some around the house for when you feel large amounts of anxiety seems important. I believe that mindfull practices like meditation and gentle yoga are the best paths to a peaceful mind, but in the meantime, some chemical assistance is a good for the short term if your mind is racing and the same thoughts are circling around and around. That is just too stressful. Have good day everyone!
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