Husband thinks it's just a bump in the road
Comments
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Annie60
I start 4 cycles bi-weekly of A/C followed by 12 weeks weekly Taxol.
BTW my hubby has really stepped up just recently! He's got the whole family rallying to make physical changes to the house for my comfort, he's taken me to most of my pre treatment appts and will be with me tomorrow. I am shocked but grateful and I let him know it!!
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That's FANTASTIC! Way to go, Mr. DMHGF!
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edj3
Impressive huh? I feel bad for not trusting him. It seemed to change after our Chemo 101 education. I'm so glad. I am pretty tough on my own but feel extra strength knowing he'll be there if I need him :-)
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I am so glad to hear that he's helping. You are doing the same regiment I did, except I have Herceptin/Perjeta every three weeks along with the taxol, I am still doing the HP.
Look at Tiffany's Twenty Terrific Tips on BC.org for help on what to bring for chemo and what might make you more comfortable during it. There were several things that helped me - a silk pillow case - easy on the head during and after hair loss, a warm blanket - chemo rooms are usually cold and the fluids that you get make you colder, a soft hat for night time - again, I was always cold. As for head coverings, I used several hats and I used t-shirts. Google how to make a t-shirt headscarf for chemo patients. I got shirts for as little as $2 and you can get them in so many colors. Add a $1 bandanna, and it's really cute. The receptionist at radiation told me about using little girl tights to make coverings but I never did this. The t-shirts were easy, (no sewing), easy to put on and I felt less like a chemo patient when I used them. Some people just rock the bald look - but we are headed into winter and you will be cold!
Get a notebook to write questions and information in, if you haven't already. This is too much to keep up with in your head.
If you are given Neulasta to help with white blood counts, take Claritin several days before and after treatment. It really helps with the bone pain many people have. Sounds weird, and my MO could not say why it helps, but it does.
Hydrate, hydrate, hydrate!!! If water taste awful, and it might, add lemon or some flavoring. I ended up drinking lemonade that we made at home. Yes, it was sugar, but it was the only thing I could tolerate. The kind with artificial sweetener tasted awful. Take the nausea meds - don't try and tough it out. Try to eat as much protein as you can. It helps you recover from treatments faster.
Rest when you need to. One of our group, who always tried to find humor, came up with a list of "You might be doing chemo if...." one of these was you need a nap after a shower. And you might!!
Don't read other people's experience. Everyone reacts differently to chemo. What made me really sick, you may breeze through. But do ask advice on this site. The people are wonderful here and will help in any way they can. If I can help, post here or PM me anytime. You are in my thoughts and prayers.
Annie
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DMHGF - just checking in to see how you are. You have been in my thoughts a lot lately - I think because we are so similar in treatment and diagnosis. Hoping you are doing OK.
Annie
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Hi Annie60 and all!
I have been pretty absent. Busy between treatment and catching up with life after it takes me out of the game haha
Round 2 of chemo in the books today. Another step closer to the end and I went by myself this time. Treatment days have been pretty good, just tiring. I had worse days after the Neulasta injection...like I was hit by a truck while sick with the flu. Not much fun. No hair loss yet but I'm prepared. Having issues finding food and drink. Nothing tastes normal. I am a huge water drinker and have had to add a small amount of iced tea to get it down. It just tastes awful if I don't.
I've had some great support showing up. Husband has continued to step up but I've had to let him know when his expectations of me are getting too much. That was hard but he took it like a champ. He says sometimes he forgets I'm not superwoman right now haha.
How is everyone else holding up?? I hope for strength and healing for everyone who has been so honest and supportive on here. You are all heros.
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So glad that you are getting much needed help and support!
re Neulasta, - were you told about Claritan helping? I found that it made all the difference!
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AnotherNYCGIRL
I got that Claritin info here!! Thank you everyone!
I started taking it before my first injection, right through 7 days after. I guess it could have been worse had I not taken it? I don't know and I don't think I want to find out haha
I wasn't pleasant. The muscle aching, bone pain, headache and fuzziness was rough.
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The pain from Neulasta can be rough. I took Claritin non stop during chemo. Sounds like you are handling things! I am in the chair next Tuesday for HP. It's not too bad as long as I remember to drink - this has been the hardest thing for me. Try some lemon with the water or lemonade, although I could not use the sugar free type, I had to have the sugar.
Let us know if you need something. I'll check in on you now and then. Prayers for you and your family.
Annie
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DMHGF , - I hope the aches and crummy feeling pass quickly!
As for eating, - I remember that during chemo food didnt taste at all like it should have, and my stomach didnt always handle things well. On many days, I relied on scrambled eggs and toast, and drank ginger ale and Peach Snapple Iced Tea (which I never drank before or after chemo). I am not a big tea drinker, but a friend gave a box of "Allegro Happy Tummy Tea" to me that she bought at Whole Foods Market, and it seemed to help. If there isnt a Whole Foods near you, I also found it on Amazon.
Hope all here are feeling ok, and getting through treatment as easily and quickly as possible!
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Thanks for the tea advice. I'll give it a shot!!
Today has been the worst day yet. I've tried to just sleep through it but each time I wake up it's to the same crappiness. Aching so bad, sick, dizzy and a pillow full of hair. Here's hoping tomorrow I'm on the upswing? Do side effects get worse with each infusion? This was only my second and the 1st one wasn't nearly this bad.
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DMHGF, - Does your oncologist know how crummy you are feeling? There are good meds to counter act the side effects! Did you get Emend (some expensive, but worth it, pills for day of and couple days after treatment? ) Also, I dont know if i mentioned it on this board or another one, my onc spilt up the A and C for me after my first round because of various side effects (very low counts, high blood pressure, etc) that I had. It took a few more weeks for me to be done, but it was more tolerable for me.
As for the hair loss, - I think it's easier if buzzed rather than having long hair fall out
I hope you feel better SOON!!
Hugs from NYC
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anotherNYCGIRL
I will tell my MO when I go next. I guess I just expect this to be normal. I have been taking Zofran for the nausea and Claritin & Tylenol for the aches. I just can't bring myself to even think about food so that's probably the dizziness and weakness. I guess I was luckier than I thought with round 1. It wasn't pleasant but I didn't know it could be so much worse.
I will talk to my Dr and see what my options are. It's great that they were able to split your's and make it more tolerable.
I learn so much here. Thanks for the advice and support :-)
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I was finally given Ativan - or lorazepam for nausea. Zolfran just didn't help that much. It is used for so many things - I still take one before my HP infusion to help with muscle spams. It really helped with the nausea. I had a hard time eating - milk shakes and coke floats tasted good and helped my throat. I agree with anotherNYGC - make sure your MO knows how bad you feel. You may want to ask for an extra bag of fluids a couple of days after chemo to help with dehydration. I had to do this a couple of times during AC. I know it's an extra trip to the MO, but it will help you feel better. I hope you feel better.
Annie
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DMHGF_ Haven't check in on you in a while. I have been having some heart trouble but everything is fine now. I hope you are doing PK. When is your last treatment?
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Annie60
Hi Annie! Thanks for checking in. I haven't really been on the site much. It's been hard keeping up.
I'm so sorry to hear you have had heart issues! How scary. So glad you are doing better though (hugs)
My last dose dense a/c is tomorrow. I am not looking forward to it. My last treatment was really really bad. I was down with nausea, body pain, dizziness for almost an entire week. Nothing was touching it. I was able to drink milk shakes which at least gave me some energy. Thanks for that! I would have never guessed!!
I actually believe it is the Neulasta more than the chemo causing the worst because I'm ok until about 4-5 hours after that injection.
My wbc has been in the 25,000 range so I am considering telling them I don't want the Neulasta. I don't know if that is something I can do. Any thoughts?
Denise
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Are you doing the ONPro - the little box attached to the arm or stomach? if so, would taking the shots - two more days to go to dr- help instead of the mega dose of the ONPro? I would certainly talk to the MO about it. My A/C SE's sounded a lot like yours. It took me 10 days to recover. I felt bad the entire time on it. Passed out three times - I should have gotten an extra bag of fluids a few days after treatment. I finally had to take Adivan - it helps with nausea, muscle spasms ( I had a reaction to taxol and perjeta and take it before my THP treatments.) It really helped with the nausea.
What's next after A/C?
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Yes I've had the OnPro each time They did offer for this last one 5 daily shots instead. They even said I can bring them home so no extra trips. I may opt for that if they say I must have something.
10 days? Ugh!! That is what I'm expecting too. It's really awful even thinking about it.
They did give me an Adivan prescription thinking it might help this next time. If it does ANYTHING I'm willing to take it. Funny, before all this I resisted taking any meds haha.
After a/c it's 12 weekly Taxol treatments then 5 weeks daily radiation then minimum 5 years hormone therapy. I hate listing it all out like that as it makes it seem never ending!
I found out last week I also have gallstones. I almost laughed. When it rains it pours :-D
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It does seem overwhelming when you list it - I cried the first time I did that. Taxol was no walk in the park - but I did not have the nausea that I had with A/C. Fatigue was bad but I was already so run down from A/C, I think that made it worse. Your taste will be altered, I could not tolerate salty things. I was a salt lover but I still cannot handle much. I had some unusual SE's on Tacol, so don't judge how you will do by me. I know what you mean about hating pills - at one point I was on 17 - three times a day. I'm down to 10, having just having to add another BP med to help my racing heart.
I didn't ice my hands and feet and I do have terrible neuropathy. So I suggest giving that a try. There is a Weekly Taxol group on this site that is helpful,
I did 7 weeks of radiation, It was by far the easiest part of this but a pain going every day. I did have to take a break due to the beginning of blisters - no pain. I had really great techs and a doctor who was super careful not to let me burn.
Don't fear the AI you need for 5 years. I'm doing fine on mine. A few hotflashes and some stiffness that exercise helps. I am more emotional, but I am a boohooer by nature. I think that is leveling out.
My Stage 4 BC friend says that cancer is like the jelly of the month club - you keep getting it whether you want it or not. I find this to be true. If I can help, please do not hesitate to PM me or post. I could not have done this without the 8 amazing women I started this forced journey with. You need someone who has walked your path. Let me know how I can help.
Annie
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Annie60
Well #4 a/c is in the books! I asked about the Neulasta. They have given me instead the 5 shots to take at home. My infusion nurse negotiated with Dr to allow me to take only 3 so I could be as well as possible over Thanksgiving, then I will have a blood draw Fri. If my levels are too low I will take the other 2 over the weekend.
They also gave me steroids to help even more with nausea, bone pain and boost my appetite so I don't get so weak. I'm optimistic...we'll see!!
I'm whipped tonight so taking my zofran and setting my alarm for 8hrs. I'm not missing a dose haha
Take care and thanks bunches for the support and advice. I'll let you know how it goes ((hugs))
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Sending you prayers and hugs. I pray your SE's are few and you get back to feeling good quick!
Annie
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how are you going ???
I have always been the caregiver of my family too I have mastectomy in July
Hubby was emotionally supportive, I think fear dominates some of what they say and do
Hubby now says it needs to be normally and life needs to go back to what it was again
I have learnt that I need lots of self care this year and I need to look at what it good for me
I work am looking at starting business and I work
There is lots of things I have not stopped doing and don’t want to do anymore around the house,for family members and just because I am no longer picking up the people pieces
Just know that he needs to come to terms with it in his own way and that takes time but you can’t do it for him and you are the one that needs the love and support
Change takes time and acceptance takes a lot longer
Be kind to all of you
Hear to chat anytiem
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DMHGF - I hope you made it through Thanksgiving without being totally worn out. Holidays were very hard for me last year. Have the SE's eased since you had your last A/C? When do you start the next round? Think about and praying for you.
Annie
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Hi Annie60
I hope your holiday was awesome!. I love Thanksgiving because everyone comes from all over to my house. It's 4 days of missed family, good food, and great fun :-)
Unfortunately I'm typing from my hospital bed. I had my last a/c infusion on 11/21 and didn't ever really get out of SEs completely. By Thanksgiving I was having some bad belly pain and by Friday I had horrible chills and s 102 temp. They admitted me and found I had really bad neutropenia. I had virtually no neutrophils and my white blood count was bottomed out.
I now have a badly inflamed intestine (a result of chemo they failed to tell me about) I haven't had a solid bite in 5 days and I can even drink without extreme pain. This side effect I could have really done without.
It really sucks that I had my entire family here for the holiday and missed it all.
They are saying a couple more days at minimum so my 1st Taxol has been put off until Dec 12. This stuff is really taking it's toll on me physically and emotionally now. I not excited about the next step, that's for sure.
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I am so sorry! Chemo - the gift that keeps on giving. I hope you are home and healing. Taxol was not a walk in the park for me, but it was easier than A/C. I was extremely fatigued - probably not helped by coming off A/C but the nausea was gone. Taste was still altered, but not as bad. It was easier to stay hydrated. Do you think they might give you more time to heal? I hate that your holiday was ruined but glad that your doctor got you in the hospital and on meds. Will you have to stay on a special diet? I just hate this for you! Prayers and hugs!
Annie
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Hi Annie60
So I got home and they pushed my first Taxol back to last Thursday. My counts were still low but they didn't want to get behind.
Ok so yesterday was day 3 after the taxol and I got hit with horrible pain from my shoulders to my ankles. Every joint and muscle especially my hips, knees, calves and ankles had stabbing pain that didn't let up No sleeping here!
It says online that it can last 3days to a week. I am getting this every week so I am afraid it is going to be a constant for the next 12 weeks!! I know you had the neuropathy. Did you also have this pain? I told myself I could handle anything better than the nausea of the a/c but I might be changing my mind haha.
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Are you still taking the claritin? What did the MO say? Sounds like it might be a reaction to taxol. Did you call the MO? How fast did they run the taxol? I has a reaction to taxol and the pain was awful. Slowing the drip might help. I also did the same to perjeta. I had to take Adivan (still do) before every treatment. although it's an anxiety med, it also stops muscle spams. I know you don"t want to take more pills, but that is something we have to get over.
Let me know what the MO says, I hope you are feeling better.
Annie
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Hi Annie
So much has happened I forgot I asked you about the pain :-)
I'm back in the hospital since Monday afternoon! WBC 1.1 and ANC was ZERO. Had a 104 temp so they threw me right in. They don't know why my counts are not coming back even though I am having to take the shots.
They flood me with fluids and antibiotics and my numbers eventually come back and they send me home. This is my second time hospitalized just in December. I'm getting so tired of this whole process. Ahhhhhhhhhhhhhhhhh.
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Oh my goodness! I am so sorry. I hope they figure this out. Will you put off taxol for a while? Please know you are in my thoughts and prayers. Let me know how you are doing.
Annie
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Hope you are home and getting stronger. We are keeping you in our prayers.
Annie
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