Starting Chemo June 2017
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Lilsuzq (Sue): I'm not getting the Carboplatin but also am on the docetaxel and yes it has kicked my butt too. I've had many cry days thinking I can't do this anymore but as you say it's only one more then we're done with this and onto the healing process. My last one is Sept 30.
Kim: You can do it. I basically have about five foods I can actually taste and can eat without gagging: Jello, Eggs, Lentil soup, Burgers/Steaks, and Orange Juice. And I did find some mini blueberry muffins at Walmart the other day that actually taste like blueberry and muffin. I'm sure by the time this is all done I'm going to have to start all over getting my blood sugars under control again. I worked so hard over the past ten years to keep them below the A1C of 7.
Paulette: find some foods you like and keep eating them.
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Pink - I'm not giving up on food yet but it's not easy to find one I like, I can't eat steak it taste like cardboard to me. Anything have salt can taste bad on day 4, I hope today they taste better. I don't know I can make it to the end but I will keep hanging in there.
Lilsuzq - life will not be normal but I think we will go on the best we can. We will try our best to make our life back to normal and be happy. I just so lucky to have my hubby by my side and all of you also.
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Paulette - sending you good thoughts! Hope you can find something that does taste good to you - then load up on it.
Peachy - we are in a similar boat, I'm also having chemo first. I started with a pretty big tumor but we can tell it has shrunk after 13 weeks of treatment. Even if lumpectomy is an option for me, I'm doing a BMX. My reasoning is that my breasts are REALLY good at growing tumors - over the last 15 years, I've had multiple benign growths in both breasts, and now at the age of 34 I had 3 cancerous tumors grow super quickly. I just feel like it would only be a matter of time before the proverbial shoe dropped in the other breast. This is based on nothing my oncologist has said, just my gut feeling. Go with your gut either way!!! Everyone else is exactly right - it's a totally personal decision.
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runnermum. My experience with DD Taxol:
Day one is long, but I do not feel terrible after getting the infusion. I do not have a bad reaction to the Benadryl or the steroid they give first like some do. I get a little sleepy. When they start to give you the Taxol they will monitor you for any histamine allergic reaction. If it happens, they said it would be within the first 20-30 min. They will stop the infusion and give you more Benadryl, wait for that to work and then start the Taxol again a little slower. If you still have a reaction, they may need to move you off Taxol. I'm told this is not very common but my nurse wanted me prepared just in case. The allergic reaction can be scary if you don't know what is happening.
So, when I get home (I go for chemo on Thursdays) I am a little tired and a little wired at the same time. Eventually the steroid wins over the Benadryl and I do not sleep very soundly. I have to force myself to shut the lights at midnight or I'll stay up all night.
Friday I am still held up by the steroid but feel a little irritable from lack of sleep- a bit of a steroid "edge." Seems when I do drift off to sleep, a hot flash is not far from waking me up these days. I work from home on Friday.
By Saturday the steroid has worn off. I normally sleep late, catching up on the sleep I lost Thurs night. I wouldn't say I feel well rested when get up. I feel some fatigue creeping during the day, but not bad.
Sunday rolls around and I start to feel stiff. Hips, and knees mostly. It hurts to be still for too long. I'm constantly stretching my legs and bending my knees. This Sunday I took Advil for it and it helped.
Monday, the stiffness is still around, but bearable. I work from home but feel I could go in if needed.
Tuesday, I go back into work feeling ok. I go to work until the following Thursday and do it all over again.
I did have a bump in the middle of treatment. A bacterial infection in my lungs took a toll on me with a week of high fever. Once the infection was identified and I got antibiotics, I was fine. Did not miss a treatment.
That is my long-winded experience. If you react like I did, I think you will be fine to go see your son compete.
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curlyN I understand your decision. I am sorry you are going through this so young. I am 48 and this is the first time I have had anything show up. I do have dense breasts and my tumor was not seen on the mammo. Maybe it has been there for awhile but only found when I felt it.
Discovering a second spot and then a positive node via an MRI was a kick in the ribs. That does push me toward BMX.
Lots to think about.
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I'm feeling guilty here girls. I had my first Taxol last Friday. I felt fine during it, no sleepiness from the benadryl. I felt nothing change. I did get sick but I'm positive it was the McDonald's hashbrown cause once I got it out I felt better. Fatigue never set in. I ate fine all weekend. I'm working and I feel as if i got nothing. I came home from chemo and tore down a kitchen wall to start some remodeling around the house (hubby said no more HGTV for me!) I hope it stays this way. I'm feeling sorta normal!
Paulette.. I wish i had your problem with food, I eat everything! I weighed 118 before chemo and now I'm 130. I want to eat all day every day! Everything tastes good to me now!
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Susie - that's so not fair I wish I can eat anything. For taxol any salt turned into bitter so I guess I can eat much salt for the next several weeks unless it changes.
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Susie never feel guilty for feeling good!! You go girl!
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Way to go Susie!!! That is wonderful and will help you feel positive going into your next Taxol too! I feel you about the weight - my onco told me early on many women gain weight on this treatment. I was all "No way, not me!". 13 weeks and 9 lbs later.....
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Susie Glad that you are feeling so good! No need to feel guilty, we are happy when our tribe members feel great!
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Susie when you feel good so do we!
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Thank You Peachy Jeanne!! Your post was so helpful! Thank u!!!
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I hit the rock bottom middle of the night last night cried then took my Ativan so I can calm down. The reason I hit the bottom because my PET scans got couple spots on my thyroid that's something I need to address after my chemo. I really should not think about it I can only do one thing at a time.
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Susie, so glad you tolerated Taxol #1! It's great to hear from you all about our GOOD days! I know that I tend to come to these forums and post more often when I'm feeling cruddy. I'd love for us to celebrate our bits of joy as well!
Paulette, I'm so sorry that you had a rough night! Keep those blinders on and focus on your treatment right now! You are right, sometimes it helps think about one thing at a time!
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Susie, Definitely glad you can eat what you want! Keep tearing down walls!
Paulette, For sure focus on what you have on your plate right now. Try not to think too far ahead. We are with you!
For those who have had lymph nodes/LX -- I am 4 months outside of surgery, and I still have a few little pains under the arm pit/breast at odd times. It's nothing that persists, but it can be annoying and unnerving. Assume it is still the process of nerves regenerating. I am going to mention to ONC this Friday. I don't see her but about every 3rd/4th round, through this. She checks my counts and okays that I'm good to go. Assume this is the way for most of you?
Have a great day, all. We are going to have a heatwave here in Northern IL with high 80s or higher for the next 5 days! Whoa. Talk about hot flashes!
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Kim: I'm six months out from surgery on lymph nodes. Now and again I get little aches/pains in that area. Nothing that lasts anywhere from a few seconds to a dull ache for part of the day, then it's gone. Occasionally the odd jolt like you said of a nerve ending repairing itself. When I had my RO meeting on Monday she did an exam and I noticed the next day things felt a little sore. Funny when she asked me if I felt any lumps. They couldn't feel any of the three lumps before I had surgery. Not sure why she thought if there were any that she could feel them. They'd have to be pretty big! Now with the scars it's hard to tell what's a lump or scar tissue.
I saw my MO once out of the five sessions and that's only because my count was lower than she wanted. As she told me when I first met her that I would not be meeting with her again unless I was a "trouble maker". All the other times it's the Nurse Practitioner. I prefer the nurse because she has more of a personality and will answer any questions. Actually she seems to know more.
Our temperatures the past two days are already down to the 40s during the day. Yesterday we had big fluffy snow flakes falling. I'll trade you Kim for those 80s. Next week we're suppose to be going up to the 60s.
Paulette: Don't worry about spots. Focus on healing yourself right now.
I think one of hardest things going forward will be any ache or pain will seem like it's the return of cancer.
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Pink - I'm going to focus on my chemo then I think about the other spots. I read the reports again I do think they could be cysts. I guess our body has so many cysts in other part of the body.
Sure feel like Fall today temperatures only dropped down to 60 I already put my flannels on. Wouldn't mind to see the 70 degrees again.
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Pink, Thank you for that. Oh, how I would trade you for some cooler temps (not what I would normally say), because it is 91 here! Yes, I am Southern, but with my flashing going on I say bring on winter (plus that means most of the treatments are over).
I would pretty well freak to see snow falling in September, but I did see it here on Halloween two years ago. Leg aches big time last night and this morning. Strange for a Thursday. I am usually a lot more energetic. I think it is the accumulation of all this catching up. Still got out and about a little this morning to run a couple of errands and "donate my blood." 7/12 of Taxol tomorrow. Getting there!
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Kim - you're getting there, I'm following you tomorrow, taxol #2 only. I do think it is accumulation and our bodies need to stay tough to get through this.
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runnermum I hope your first taxol went smoothly today and you are feeling ok.
kim may tomorrow by lucky #7 for you. My nurse told me awhile back that this was like a boxing match. Early rounds you're energetic and pumped up but by the later rounds, you've been punched enough times and may need to hang on the ropes a little. Hope your aches fade soon.
Julia thanks for the recommendation of the e-book. I looked at nancy's blog and description of the book and will probably download it this weekend.
I mentioned I had some ingrown hairs on my head but some research leads me to believe they might actually be folliculitis. (I don't know how people got through this without the internet!) It could be from the steroid or the chemo. Unless they get infected, it's not a big medical deal - they are just super sensitive! If they do get infected, I'll need to get an antibiotic. I have less than 10 bumps. After looking around online for what to do, I started to wash my head with the hibiclens I bought when I thought I was having surgery first, and then apply benzoyl peroxide cream to each bump. It seems to help. I just also read that apple cider vinegar may also take care of them so I may try that. Just wanted to give a head's up about this if you haven't heard about it.
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peachy - thank you for the info so I keep track of my bald head. I have hibiciens also if I get ingrown I will use that to clean it up
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Thank you Peachy Jeanne. Everything went well! Very long day! Not working today, going in for Nuelasta shot this afternoon. That can make me very tired go preparing for that. 1 down...3 to go.
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Sitting in the chair getting Taxol #2. My hemoglobin has dropped to 9.5 that has me a little worried. Guess it's time to bump up on the red meats and fish. I'm really not happy about my weight gain.
What do you girls eat to help your levels stay on the higher side?
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Peachy: Love your analogy of chemo. I'm hanging onto the ropes these days for sure. Fighting to stay in the game. I've had a few of those pimples on my head and did what they said not to do! Works for me. I find I need to let my head breathe a bit throughout the day.
Susie: When they told me at my last treatment that my RBC was getting too low I started a high dose 1200 mcg of B12 right away. Also ate a few more steaks than normal and bbq some more burgers. Also eating one egg a day and added spinach to my diet. Not sure if that's what made the difference but my trip to the ER determined that my RBC are holding their own for now. You could also try iron pills but I took one and ended up with some pretty nasty stomach aches for a couple of days. I don't think chemo and iron pills go together. Think positive and tell your bone marrow to make more RBC. I hope it improves or holds its own. Having a blood transfusion will make you fell better or so I was told but no something I'd want to add to my list of side effects. Hope your treatment goes well.
Everyone have a great weekend. Minimal side effects for everyone.
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Hap I didn't see doc today. Just chemo. Nurse said to eat more green leafy vegetables, high protein and iron goods. Ugh I'm so limited with celiac now this!
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Susie - my HGB is 9.6 not much better than you. I'm taking B12 now not sure what I can do to pump it up? I hate to do blood transfusion so I'm can do chemo. I'm only doing my taxol #2 still got 10 more to do. I guess if ,my HGB not going up blood transfusion would be my future step
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Paulette we are on the same path. I had #2 today and 10 more to go!
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Susie, I looked back my blood test reports, each taxol I'm down .5 HGB, I like to break this record, maybe only down .3. I don't know hot do it yet
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Taxol 7/12 complete! I even got them to reduce my steroid from 10mg to 4mg, so I can hopefully sleep tonight. We went out afterwards and ate yummy Chinese. I was craving it.
I also got her to double the dose of my Effexor to hopefully curb some of these hot flashes. She said try that for a month and if it doesn't help, she's got another Rx we can try.I found out today that I have to have a CT scan post chemo. I had 5 very small (less than 5mm) nodules in my lungs. I remember reading that on my pathology report, and faintly remember discussing, but she said we just want to make sure they have not grown large. She believes it is absolutely nothing, but I am reminded how much the radiologist thought the tumor was 75% likely nothing. Going to worry about this later. She did say she will want to start me on Tamoxifen after radiation - 10 years. I later told DH, I am glad she thinks I will live that long.
She also mentioned 3 clinical trials I may be a candidate for but again, let me get through these last few chemos and then deal with what's next.Susie, My Hemoglobin was 11.0 today, up from 10.7 last week. It should be 12-15, but they were encouraged by that. I had some flank steak this week and a LOT of chicken. Remember, I eat Chick-fil-A 2-3x a week, plus I had orange chicken for lunch and made a chicken crockpot recipe last weekend. I could live off the yardbird! My friend sent me a Nutribullet, so we are going to make smoothies this weekend with fruits and spinach. Hoping that will get me hydrated more...still struggling there. Could you make yourself some smoothies using the spinach and fruits/nuts? Hang in there. I am sure it is a big challenge with your added Celiac!
Runnermum, Hang in there. Hoping your SEs are mild!
Peachy, I definitely feel I have to fight more to feel my "old" self. But, my "old" went to Dunkin Donuts to get some for my live support group last night. She gave me a senior discount without asking! I was feeling I looked blah yesterday anyway, but girl of 22ish. P-l-e-a-s-e. I will take the discount, though....ha. My joint pain was better today! I admitted to my ONC I had not been walking the last 2 weeks due to more fatigue. She said just do 1/2 mile a day if possible. I think that is much more doable. I'm going to try tomorrow. I do have a treadmill inside, if the heat is too much. The car was at 103 about halfway home from lunch! I could NOT believe that. Hotter than GA and FL? On the first official day of fall? It's coming, though...next Wednesday. I am ready.
Interesting about the hair follicles. Do you shampoo what is coming in at all? I have been, (just a tiny dab will do me). Wonder if that matters? Hopefully, that will clear soon, but I didn't know about this either. We are going to be so helpful to others after this is all over. We have learned A LOT!
Have a great weekend to all!! Stay strong!
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Kim - WTG chicken girl, so happy to see someone beat the red blood count! I'm going to try to eat mor egg, oatmeal, meat and whatever to get more blood!! When I have my CT and PET scans they found some nodules on my thyroid, he said it is common to have and they are so small that you can't even feel it. I'm going to have ultrasound on Monday hope they are okay
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