Starting Chemo April 2016
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NJNANCY and SHERIE - CT - Hope all went well for you girls today. Thinking of you both.
ZOZIANA - Thanks for the great tips re make up and hair. Loving the glasses idea. Would never have thought of that!
Hope that everyone is feeling good today. Another lovely sunny day here in Ireland. I think the fine weather really helps my mood. Its great to get out and walk by the sea. I feel like it energises me. I'm on day 13 today and I feel like today and yesterday were almost normal for me. I felt like the old me again. My taste buds are gone completely now but I can live with that. Here's hoping round 2 goes as well. Roll on Wednesday!
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Thank you CJSharma. She is ER/PR negative, Her2 positive.
Wednesday is quickly approaching and I'm extremely scared.
I'm also concerned since she doesn't get her port in until the week after her first dose. She also hasn't had any pre- chemo cardiac work up. No echo or anything yet. My mom has a Mitral valve prolapse (no symptoms) and they're aware but maybe they're waiting for the echo?
She also has a CT and an abdo ultrasound the Friday after (2 days post her first chemo) I know timing always isnt the greatest but... (Her oncologist has been pretty personable and that but this just seems weird...)
She is also suppose to have her neulasta injection that same Friday.
I was going to to ask my mom to call and question these concerns but I don't think she will.
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WERWARRIORS - First of all not getting the port in before round 1 would not be a big problem. Of course it would have been better to have had it in but it won't do her any harm to have a cannula for the first one.
I would be concerned at her not having the Echo Heart scan though beforehand especially with the valve problem. An Echo Heart scan would only take about 15 mins to do so I am surprised it is not a priority in your mother's case. I would be okay with the CT and ultrasound on the Friday. When is she getting the Echo? Having the Neulasta on the Fri would be okay too.
Of course I am not an Oncologist, and this is all just my opinion. I see she is having AC so based on that she should be having the echo before chemo. Could you ring her Oncologist and ask about it, or is this breaching her privacy ?
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she is having AC first. I am concerned about the echo too but when I bring it up to my mom it only stresses her out and she ends up getting mad when I talk about it.
I'm not sure if they would tell me much. I'm her next of kin but maybe I could ask her again to call
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weRwarriors - has your mom had an echo cardiogram before? I just had mine - 2 treatments in. I have no known heart problems (well, I can say that until I get the results back). I'm wondering if her doctors are thinking about insurance and want to get the echo AFTER the first few rounds of chemo to see how the chemo is effecting her heart. That would be logical to me, and explain why it's delayed. Will you mom let you go with her to treatment? You can totally ask the nurses there. The oncology nurses are the most amazing people I have ever met.
Gracie - enjoy the sunshine! Isn't it amazing when the fog lifts and you feel NORMAL again? It's absolutely amazing!
Numb - hope all is well!
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MIZZOH and HIKERCHIC - Best of Luck tomorrow, hope you have a good day.
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WeRwarriors - I had my echo a week after my first AC. Like CJ, I have no known heart problems but I agree with her re insurance. Makes sense. I second her sentiments also about the oncology nurses. They will be able to answer any concerns you may have. If in doubt or worried about anything just ask them. They will appreciate how anxious you and your Mum are and will be happy to help alleviate your fears. Wishing you both the best, try not to worry. Your mum is in good hands x
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weRwarriors - I have mitral valve prolapse also and I'm close to your mom's age. I'm on AC and then Taxol. I had a MUGA heart scan done before I started instead of an echo but I think that's just doctor preference. I think they are more concerned in terms of heart muscle as opposed to valve issues. That doesn't really do anything to explain the timing of her tests, but I guess the doctors have their reasons? It certainly is being thrown into a whole new world isn't it?
Round 2 is in the books! Half way through my AC rounds.
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Well, that's interesting, CJSharma and Gracietoo had the chemo first before the echo scan, so maybe you have nothing to worry about at all WeRwarriors. Going with your Mom and asking the nurses anything you want to know is also a good idea. So best of luck on Wednesday.
CJSHARMA - Feeling good today and am all set for my scope tomorrow. I am also on schedule to have my 2nd round on Friday, as planned. I thought I might not be fit but my Oncologist said that so long as my WBC is over 1 they will do the chemo. I was 1.5 yesterday and it will go up more before Friday. Happy days.
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yes she has. Every time everything has been normal. Maybe they're waiting like you sai
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Numb - That is good news! Delighted to hear youre on the mend. So good to know youre back on schedule. Best of luck with the scope tomorrow.
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Hi Everyone - I have been a little MIA so I needed to read through all the posts.
Ok to the one that posted on the echo my oncologist would not allow me to start chemo until that was done however he was going to start my first round of chemo before my port was in but I was able to get in the day prior.
So tomorrow is my 2nd chemo - I do mine every 2 weeks and really the first day and day after were kind of bad and then I had one other bad day but all this week I have been great energy and appetite which is great with 3 kids I have prayed that I would have energy and not be too sick.
Someone asked on the mouthwash I am using the biotene because well I was too lazy to have to mix it up however someone recommended the orajel one for mouth sores so I rotate what I use.
My hair has really been coming out so my kids and friends did a no hair don't care party and we cut / shaved my hair short my kids had a lot of fun doing it so I am wearing hats.
I am nervous for tomorrow as it will be the first time they actually access my port last time they accessed it during my port surgery the day before.
Then this afternoon the genetic counselor called me I tested positive for BRACHA 2 and some colon cancer gene so now I have to go back to talk to them.
I will try and keep up with you all better I do feel like my mass has shrunk some its not feeling so prominent.
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I had my first chemo treatment (TCH every 3 weeks) on April 7th. I am still having side effects to the point that I am unable to work and am on short term disability until I am done with my 6 treatments. I was wondering if anyone else has had to go this route. It seems like (from what i've read) that most women can work through the chemo treatments. I assumed that I would be sick for a couple of days and then just be back to my normal energy level. I am having issues with fatigue. On good days I can function at about 50% of my "pre" chemo energy level. If anyone else has experienced this or has any suggestions I would be extremely grateful.
Thanks!
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KIDSID22 - Welcome to this forum. I don't work, I am retired but I have to say that if I did need to go to work every day I would not be up to it. I have enough energy to go for short walks and to make light meals but I would not like if I had to be in a certain place at a certain time every time and have to deal with the public. So you are not alone there. I would be able to function at about say 60 - 70 per cent of my pre chemo energy though, but some days are better than others.
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CREATEYOUROWNSUNSHINE - welcome back. Best of luck tomorrow on your 2nd chemo. I also use the Biotene mouthwash for the same reason as you, but I definitely found that rinsing with it 4 times a day was too much. My mouth got sore from the frequent use and now I probably only use it once a day and my mouth is fine. I love that phrase "no hair, don't care" and so glad your kids had fun with this. I don't have a port but I am sure it is very easy to use one, so don't worry about that. Good luck on your Counsellor chat and great that your mass has shrunk.
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Numb - Yay! Glad your WBC's are up! That's great!
CreateSunshine - I've never had infusions through my veins, but I get your nervousness about the port. Honestly though, it's a quick stick and you're "plugged in". It's pretty easy and painless, actually, but you can ask for a numbing agent. My tumor shrunk 10-15% my first round, so it's completely possible yours has too. Sorry about your genetic marking. It does let you know what you're dealing with.
Kids - I'm on a different treatment plan, but I'm down for about a week, and feeling okay for the next, but everyone is different. I am very tired. I used to sleep 6 maybe 7 hours a night. Anything more than 8 and i'd be totally restless. Now I can easily sleep 8-9 hours. I'm thinking of you. Hope it gets better - the second round was easier for me than the first - hopefully it's the same for you.
I'm kind of down today, which I didn't expect. Oddly, I have all sorts of people calling me and reaching out. I'm meeting a local forum member for coffee Wednesday. My nephew from India (my whatever he is is Indian) is in town for training (he lives in Raleigh now) so we're going out Thursday with my whatever he is (hubby is close enough). Anna comes in to town Friday. Saturday friends are coming for brunch, and we're meeting other friends for a late lunch. Sunday I'll probably try to get my house clean. Goodness.
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CJSHARMA - You seem to have great energy, posting nice posts on a regular basis. So good to read your 2nd round was easier than your first, so cumulative is not happening for you......not yet anyway and hopefully never will. It is 4.17 a.m. here now and I just woke up in the middle of the night and felt so cold. I had to put on my dressing gown in bed. I will probably wake up with the heat in an hour's time.
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Oh Numb! I so get that. I alternate between being snuggled in blankets to be unable to tolerate even a sheet. Drives me insane!
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Well it is First Chemo Eve here and my husband and I have been crazy busy all day with an echocardiogram appointment, cold capping, picking up meds, etc. I believe we have it all under control. Just wanted to say how much I appreciate all the info shared here. If any further advice for the first chemo, please send my way! I'm at a loss as to what to have for breakfast... (have to be at center at 8:45 a.m.....ugh).
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I just heard back about his morning's blood test. My red cells are OK, but white cells are WAY too low. Now waiting (and snoozing) to hear back from the Onc.
Is there anything i can do / take to boost white cells? I have been told to keep a close eye on my temp - if it goes to 38 C to head straight to the hospital.
G'night all - I've been awake for 3 hours now - time for a nap.
Sue.
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Good morning Suems - I had that problem end of last week. My white cells were .2 which was very low. I had a temp of 38.2 so I had to go straight to the hospital and was kept in for 3 nights. I was on fluids and antibiotics and this and time brought my white cells back to 1.5, still a bit low but not neutropenia. There was nothing that I was advised to do. Your white cells go down roughly 2 weeks after chemo and then they go back up again before you get the next infusion, at least that is my understanding of it. So I guess yours will come back up again themselves without you having to do anything about it, but make sure you stay away from anyone who might have germs, crowds etc. Best of Luck with this.
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HIKERCHIC - thinking of you today, also MIZZOH, hope you have a good experience.
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Kidsid22 - I too have signed off work until this treatment is all over. I work an hours commute from where I live and commuted daily by bus. I also work in an office with 8 other people and was advised by my oncologist that I would impede my treatment and recovery being in such close proximity to possible infection. I'm on dose dense chemo and this also factored into my decision. I'm 45 yrs old and have never not worked. I have to admit that I'm finding it hard and missing my daily routine. However, this is only 6 months of my life and I have to look at the bigger picture. Everybody is different and every case is different. I want to do whats best for me.I'm just one chemo down so far and I think I probably could have managed to work through it but it would have been a tough ask on a couple of the days just after infusion. I also think my concentration levels are definitely compromised which wouldn't help as I work with figures. My bosses have been quite supportive and I realise I'm lucky in that respect. Take it a day at a time. I hope things get better for you.
Hickerchic - Best of luck today. I hope that everything goes well for you.
CJ - I too felt very down yesterday evening and had my first "meltdown". It took me by complete surprise too. Very odd. I wept and bawled for about an hour and just felt utterly helpless and overwhelmed. Thank God for my husband who just let me vent. It was the first time I just let everything out since being diagnosed and in a way, it was sanative. This journey is a total roller coaster of emotion and I guess we just have to go with it. Great to see that you are keeping yourself busy. I look forward to reading your posts. You are a very inspiring lady x
Wishing everyone a happy and positive day
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HIKERCHIC--Good luck! Let us know how it goes! I start Friday so I'm right behind you in this last week of the month..we are the tail end of this April group (and aren't we lucky to be in it--thanks NUMB for starting it, and thanks to the active ladies of April!)
I'm not allowed to do cold caps, but MO allows me to place frozen peas for "slight cooling" under fingers and toes to help prevent neuropathy, so I'm going to do that. Are you doing anything for fingers or toes?And, in the spirit of take one day at a time, I am having a great day because I just found out my PET scan earlier today showed that my liver spots (found on CT and 5% chance of cancer) were inactive; they are fairly sure they are not cancer ! (They never say 100% when the spots are this small.)
So I am practically looking forward to my chemo start on Friday, because if the liver spots had been active, we would have had to have a whole different round of consultations and come up with a different treatment plan, and then I would have had to kick into the May group...and I really like all of you!
I had no idea how truly stressed and worried about this I was, until the doctor called me (at 6:30 pm--isn't that just lovely? So kind to deliver good news so one can relax a bit more.)0 -
Hiker - thinking of you this morning! You're probably on your way, but I was going to say to eat your normal breakfast. Check back and let us know how you did. I'm hoping is a fairly smooth road for you.
Suems - have you received a Nuelasta shot (or any version of it)? That is the best way. But make sure you eat plenty of food with folic acid (milk, citrus fruits, spinach and beans are all good sources). You can also help boost your immune system with things like green tea, citrus, broccoli, almonds, spinach, red bell peppers, garlic, ginger, etc. Hope that helps.
Numb - hope you have a wonderful day!
Gracietoo - Oh man, it's such a roller coaster, and I'm a pretty stable person. It just doesn't matter - this is scary, and the drugs are scary. I think melt downs are part of the journey.
I still don't have access to my Echo results. As my MO hasn't called, I'll assume it's not bad news. But, it is worrying. I'm also a bundle of nerves as I have a presentation for my manager, and VP and I'm not prepared. I'm almost prepped, and will finish when I get to the office (probably a little earlier than normal), but I hate not having everything locked down. I'm typically happy I chose to work through this, but right now, I'm wishing I had taken time off.
Happy Tuesday all! Hope everyone has a great day!
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suems - My WBC were about 1.5 last week and I was worried too. I ate a lot of yoghurt and drank green tea after CS shared this link with me. I hope it helped. Tomorrow I have another bloodtest so we'll see the results. But I dont worry a lot since I read that WBC becomes lowest on the 2. week of chemo.
Kidsid22 - I am working through chemo and had no issues with it so far. My job is mostly on computers and we have private shuttle which takes us from home to office everyday. I'm having the day of the chemo off (that is Friday), rest for the weekend and start on Monday. I've had no fatigue during work hours apart from my Nadir days which was manageable.
Numb - Ready for the second round on Friday? I hope this one will be better for us since we learned so much since. Best of luck!
Have a great Tuesday everybody
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Tomorrow marks the first day of AC for my mom. I'm happy to see others are starting at the end of the month too. Please keep sharing how you're doing.
The gitters and fears are there for my mom. I wish I could take this from her and do it for her.
I have a bag packed with a plush blanket, ice packs (for fingers/toes) hand cream, a few snacks/ginger mints and etc.I told her to drink lots today, use the biotene mouth wash/tooth paste, have a few prunes, put a couple more coats of OPI nail envy on and I can't remember what else.
If anyone has any tips they did the night before that greatly improved their possible symptoms please share
- Sascha
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My first session went well yesterday. I am cold capping, so that was a nice distraction. I did not sleep well at all last night, so I'm really tired. My head feels warm, maybe because it was freezing all day yesterday......LOL! I have to take my neulsta at 2:00.
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CJ-Good luck with your presentation! You will rock it! You sound like you are usually the over prepared type (which is just fine) but I'm guessing your 85% is everyone else's 100%. You can do it!
weRwarriors- Good luck with your mom. She is so lucky you are there with her! It boosted my spirits so very much when my 22 year old daughter came home last weekend to keep me company and help get things organized (like makeup!) for chemo...
Sheri-CT- Hope you can nap today! Set an alarm and sleep until neulasta!
Kids22 and Gracietoo: I think working or not is a personal choice, one influenced by various personal factors. You do what you have to do, or do what want to do, all of course influenced by what you can do.
After my double BMX, as my recovery was a little harder than expected,so I felt I had to take time off if I was having chemo (which I didn't know until recently.)
I will miss certain things about work, but I am not particularly a super strong person--I have some other physical ailments that are controlled but take a careful lifestyle. Even before cancer, managing my health to optimize it took a lot of time and work (it's hard to eat out much or used processed foods; I can't even buy a prepared granola mix or pasta sauce, even at Whole Foods, that is okay for me to eat, so there is a lot of cooking, which I don't mind but it takes time.) And with getting regular exercise in on top of that, plus work, well, I was often very, very tired before all of this cancer treatment.
I'm lucky I have some sick time built up, and that I have job protections that mean I don't lose my seniority when I return in 4 months or so, when chemo is done. I am very grateful for this. My doctors agree this is the best choice for me.
To combat feeling a bit at sea without my profession, I am working on a few personal projects that I've wanted to do for a while but never have time for; one is writing a children's story. I also would like to work on my baking (celiac friendly but also something called low FODMAP; it's complicated and time consuming!)
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Hi All - presentation went smashingly well. I had a customer cancel a meeting and managed to get it finished then. My boss really liked what I did. I was kind of hoping it would be pushed back, but now I'm glad it's done and over.
Good luck tomorrow Agharta! Hope your WBC's are good!
weRwarriors - Thinking of you and your mom. She's lucky to have you by her side. The only tip I have is to drink lots and lots of water. My company is HQ'd out of Ontario - so I have a lot of friends up there. Wishing you the best.
Sheri - glad you are doing well! Take a claritin before the Neulasta shot to help with any pain the shot may give you.
Zoziana - Sounds like you are doing exactly what you should be doing. I prepare most of my meals at home, too. I just think it's healthier. I love that you are writing a children's story! I can't wait to hear more about that.
Happy Tuesday to all!
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