Starting Chemo in December 2016
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Hello fellow December soldiers
My last post was on one of my worst days (day 6 & 7) while I was feeling beaten and overwhelmed with many more months of treatment ahead and feelings of doubt to how I would cope. Thank goodness I have turned the corner so thought it was time for an update to offer hope for a better day tomorrow for those of you currently with side effects.
My tummy is still very sensitive and I'm only able to tolerate apple sauce (tinfuls) and bananas on toast. Everything else gives me terrible discomfort still followed by diarrhoea. But on a good note- my tummy has had more settled time thanks to the BRAT diet, DeGas (simethicone) to break up the gas, codeine & paracetamol instead of anti-inflammatories for my bone pain and Imodium if needed for diarrhoea (codeine also helped this).
I've been more comfortable, so able to rest easier, even if some nights I'm wakeful, I'm still able to rest properly. The rest has meant I've been able to work more which has done wonders for my fighting spirit. Managed 3 hours on my worst day, but then 6 the next and a full 8hr today! I'm lucky to have been able to change my hours to a 7am start as I'm always awake early so better to be working while I feel my best, and still get home at 3.30 instead of 5 for a much needed nap. My vision is constantly bad from exhaustion I'm guessing but I keep driving to a minimum and with antibiotic cream my nose no longer looks like Rudolf and feels much better too. My mouth, especially the roof is very tender now when I brush and rinse so I'll keep a lookout for sores and thrush. Wig is washed and hanging on its stand on my dresser and my lovely headwear from Headcovers unlimited arrived today so I'm feeling stronger and ready for the next hurdle!
I guess what I'm saying is try not to lose hope and faith in your body's ability to fightthe horrible chemo battle. Cuddle a teddy and cry when you need to but keep fighting the fight even if all you can do is drink your fluids, mouth rinse etc, you are still helping your body recover and beat this beast. Thinking of you all xx
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My oncologist had me take Claritin to control bone pain with my neulesta (sp?) shot. She said it works on about 85% of patients, though they have no idea why. It seems to have worked well for me, as I experienced no bone pain with my first shot. Has anyone else had this recommended to them?
Also, I went through five different medication combinations before they settled on reglan and benadryl to control my motion sickness-like nausea. I guess since I'm thirty I am more prone to strong and long lasting nausea, at least that's what the nurse said. Is anyone else on a non-first line medication combination to control nausea? I'm interested in some more possible combinations to discuss with my oncologist.
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hi I'm starting chemo on the 23rd December and I'm in a right panic. I'm still trying to get my head around the fact that my cancer was diagnosed on the 21st October and I had a double mastectomy on the 9th November now I'm having chemo. Wow what a roller coaster. My doctor also thinks that I'm imagining the sharp stabbing pain and the annoying twinges under my arms. She stopped my pain medication cold and now I'm having withdrawals. Not really looking for anything but support which I suspect that I have picked the right group for it. It's amazing how hearing from other people going through the same thing makes it easier to deal with it. Anyway thanks
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I used Brian Joseph's FAITHFULLY - it did not work.
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Hi Everyone- I'm a part of the Aug chemo board and have been jumping on Sept as well. Sometimes it's helpful to go back a few months to see how things are handled with the SE's and getting suggestions. Hang in there! This sucks and everyone is different. I had my #6 chemo delayed last week- platelets dropped, but they came up tremendously today and got it done! Now I wait the dreaded weekend when I feel like crap, but looking forward to getting it over with.
My taste buds are really off, so I get the eating issues- I partially freeze vitamin water, I can enjoy Rita's Italian Ice throughout the chemo and stocked up with 3 in my freezer lol. SALT I need to salt the heck out of food.
I take claritin for 7 days, and it does help. I actually take it all the time now, as one of the side effects is twitching and watery eyes, so the Dr said it's not going to hurt at all to keep taking it.
Wishing you all smooth sailing and low side effects. There are down days, but we will get through this!!
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Had my second A/C treatment today. So far I'm feeling okay. My doctor prescribed Prilosec to help with the heartburn I've been having. Heartburn and a dry mouth have been my worst S/Es so far so i really shouldn't complain. Keep fighting, everyone!
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So, I've been trying not to read everyone's posts the last couple days simply because I've just been getting too nervous about my first infusion. I melted down several times yesterday.....but thankfully was actually able to sleep some last night. Well today I get to face the music so to speak. Anyway, I'm hoping the nurses don't have to stick my multiple times to find a vein that will work for the treatment. I know it's going to be a long day but am thankful to have this sounding board and a group of wonderful women who are there to support each other and share experiences.
After today, I'll try to go back and read what everyone's been saying in this forum. I hope everyone is managing their SE's and emotions so far.
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ILSunrise - good luck with your treatment today! Being nervous and having melt-downs is totally normal and I'm glad you were able to get some sleep last night! I was terribly nervous for my first treatment, and then I had the reaction to the Taxotere, which is kind of already causing me anxiety for the next treatment, even though they assured me that it won't happen again now that they know I'm sensitive to it. Fingers crossed for a good vein!
I went to my first counseling session today. I pretty much just cried for the whole hour while telling the counselor everything I have gone through since July when I found the lump. She said I'm going through the stages of grief, but with this devastating and complex diagnosis, she said it's like I'm going through the whole grief process again and again on a weekly or even daily basis. It's one thing to have a definite loss "event" and then go through the stages from there. It's another thing entirely when you get a diagnosis, then you need a double mastectomy, then you learn it's 2 types of cancer, then you need chemo and learn you can't have a baby like you wanted (or when you wanted), you have trust issues with your doctor, you lose your hair, and each separate item would be something to grieve and here I'm having to handle it all together - one thing after another. But then I also feel guilty when I feel sorry for myself because I know even with all this, I'm still better off than a lot of people would be in my situation. My surgeries went really well, I'm happy with the way my breasts turned out, I have a great support system, good insurance, my work has been really understanding, etc. I really have the best possible situation when going through this whole ordeal and I know I should be thankful (and I try to be), but at the same time, I just want to hide under the covers and cry because I never wanted any of this in the first place...
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Update: Had my first infusion on Tuesday. Everything went well. Was there from 9am to about 2:30pm. The next day which was yesterday I went back in for my Neulasta shot. Taking the Claritin to prevent bone pain from the Neulasta. I was really wired up yesterday from the steroids they gave me during the infusion. Today feeling more normal. No nausea so far thank goodness. So far so good. Sleeping okay.
Love and hugs to you all,
Pam
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I had to come to ER last night with an all day bloody nose that had me freaked out. They admitted me, tested platelets yet again and I got my third platelet infusion in three days. Now they've decided I have ITP. Can't keep shoving platelets into me so now starting on more powerful steroids, followed by immunoglobulin to convince my body to stop killing off the platelets. And they need to figure out which drug did this. And fix it. Looks like a three day hospital stay.
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So, I'm now starting my countdown clock - one infusion down, three to go. I was at the cancer center from 8:00 AM to 2:45 PM. I had a little bit of a rough start.The first vein they tried to use, didn't cooperate, so that had to choose a different one which was the side of my right wrist. It was kind of an awkward place,so my plan of working on Christmas cards while I was sitting there didn't happen. Oh well.... Then when they started the IV drip of Taxotere, I started to have shortness of breath after about 5 minutes. This of course freaked me out, so I started getting really anxious and crying. The nurses were great though. They came right over and stopped the drip. They took my BP, pulse ox and gave me some oxygen. After consulting with the MO's assistant, they started it back up after about 15 minutes at a slower rate. After that I had no other issues other than feeling a little off when I left. Anyway, I'm really glad to be home and am hoping I sleep OK tonight.
Jezikah - glad to hear you made it to counseling. I can't imagine how overwhelmed you must feel. Give yourself time to make it through all the stages of grief. I hope you had a good rapport with your counselor and feel comfortable seeing them for more sessions. Good for you that you can still count your blessings and be thankful. Don't be too hard on yourself either when you feel sorry for yourself.
Pamlamb - glad to hear you're feeling pretty good so far.
chickensandgoats - heartburn and dry mouth don't sound to bad. Way to go, two treatments done!
Naniisscared1 - It's definitely been a roller coaster for you having all the diagnosis and treatments so close together. I've had a little more time to process my news and research everything. Hang in there. You've come to the right place for support.
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My first treatment of THCP which was given in the order of PHCT. I was at the center from 9am to 4pm. They really like to take things slow and monitor reactions the first day of treatment.. Luckily only reaction I had was a minor headache, but the nurse allowed me some Tylenol that did the job in half hour. I was surprised because Tylenol usually doesn't work for me.
Next treatment will be after the new year and should take closer to 4 to 5 hours. It is a nice center but not nice enough to spend the entire day for treatment.:)
1 down 5 more to go. I'm just hoping that the winter weather coming doesn't delay any of my future treatments.
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bareclaws so sorry to hear you are having so many issues. Hang in there honey. We have to keep moving forward.
I have been away for a few days because things got worse for me. I went to my third IV infusion this week today because evidently I had a bad reaction to the steroid that I took for 3 days following chemo. I had horrible indigestion where it was burning from the pit of my stomach to the back of my throat. I got sick 2 times. Pepcid was not touching it so doc prescribed Prilocec. Ulcers all over my tongue. Pain in all of my surgery sites. On top of all that I got a UTI. My white blood cells are very low so I have been on Antibiotics for 3 days now and told to stay away from the world. I am on the way back up being able to eat now. I lost 5 lbs in less than a week so I got a lot of eating to do. I had no SE's to Neulasta but I did take Claritan.
Not sure what next week will bring with my 2nd AC infusion scheduled for the 21st. I have a lot to discuss with my MO before round 2. I had to take off work this week and that can't continue to happen.
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My nerves are taking over again. I will start my dance with the red devil on 12/30. I know it kills cancer cells, but now Im worrying about heart issues. I had my Echo yesterday, supposed to have my port put in next Thursday. I know I have to do it but I am getting really scared. Ive done ok with everthing so far, but this really is freaking me out.
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Dear Waterdog,
Thanks for posting. I really need to hear from people that made it thru.
I u derstand about not coming on here. They now want me to have chemo and I couldn't read the blogs for a while.
Why did you need chemo . They want me to have chemo because of my mammaprint high risk score
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I am wondering what happened to Scaredashell
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gmmiph - I checked Scaredashell's posts in other forums, and I think maybe she was getting a second opinion to see if she can have a KI67 test prior to deciding whether to have chemo. So, I'm not sure if she started any treatments yet.
scaredashell07 - we're thinking of you and hope you're getting the information you need to make informed treatment decisions.
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Bareclaws- Wow what a week you have had. Sorry to hear about the ITP. I bet that is scary and devastating. Hope they find a regimen you can handle.
SCGIRL50 - Sorry you had such a strong reaction. This roller-coaster ride is something else. I can't image the pain from those mouth ulcers.
Had my first chemo yesterday (TCHP) 12/15. I was there from 9:00 to 3:30. It was a very long day but it went pretty smoothly. The nurses were nice and let some of my family stay even though they usually just allow 2 people to each patient. Center was nice and warm which I appreciated. I was surprised by all the pre-drugs before they started on the actual chemo. My only SE's so far seem to be allergy related...runny nose/sneezing, swollen eye lids. I have severe allergies so this isn't to surprising. Will see what happens over the next few days. I have heard days 3 and 4 are the worst. I am working from home today and possibly Monday. I see my MO on Tuesday and get blood work done. Herceptin alone this Thursday and every Thursday for a year.
My thoughts are with all of you starting next week. I know I have been very nervous and I am glad to have the first one behind me.
Getting a pixie hair cut today so It won't be so traumatic when it starts falling out. I have heard it is about 2 weeks after first treatment. I have a wig that I got styled through a stylist that volunteers with the Cancer Society. I just have been having a hard time getting used to wearing it. It is long and seems uncomfortable. I also got a halo of hair to go under hats and scarves from TLC website. It seems much more comfortable. I will probably stick to it unless I am going to work. I know appearance shouldn't matter so much but it does for me. I work with a lot of professionals who dress up daily so that is probably why I feel so concerned about it at work.
One down five more to go.
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Dizzygirl - congratulations on making it through your first chemo! Doesn't it feel good to check one off the list? I have had my second treatment. 15 days since the first and my hair is just starting to thin down. I cut it off short like you and now it's just a waiting game. I have a wig but I haven't worn it yet. I am saving it for work. I teach at a high school and think it would be less strange to the students. I plan to stick to scarves and hats at home and out and about for more casual times.
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Hi ILSunrise,
Thanks for the update about Scaredashell. It is good to know that she's trying to have some other test that would give her more info and probably a better treatment plan specific to her case. I never had that option, i just did what my MO said.
Congrats on your first infusion despite some vein problems and shortness of breath. I too used my cannula vein for my two previous infusions. There were some anxious moments for me too using my veins, which is a little bit painful on my second infusion. There were mix feelings of warm and cold sensations as the 3 different drugs entered my arm but all were remedied by just adjusting the IV drip. You should try to exercise your hand and arm using a soft rubber ball as hand grip. My nurse said it opens up the ligaments and veins better with grip exercises. I hope we both dont have veins problems on our next infusion. Looking at your signature line, i think you have a very good prognosis having only a stage 1A and positive er/pr status which gives you the option to have hormonal therapy. That's great. I am TNBC and can you only get chemotherapy.
Ok, good luck to both of us and to all the brave December chemowarriors on this thread.
Best Wishes and Happy Holidays to all.
Gina
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hello. I'm here. I'm so sorry for not posting lately. Been a it depressed about an MRI for hip pain before chemo. MRI was fine. Thank God!!! And I ended up not getting a second opinion. The doctor explained well enough and I am def not considering skipping chemo. acruallyhad my first treatment today. feel ok. A bit jittery maybe becsue of the steroid. I'm also a little nauseous. I am tired too. Doing to bed early tonight. Is the jittery from the steroid?
Hope everyone is hanging there and sorry for those not feeling great.
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Good evening! I had my first treatment on Monday and have been doing pretty well. I find I have energy in the mornings and get tired late afternoon and into the evening. Minor pain and nausea. I am super hungry! Must be the steroids. Now I understand how you can actually gain weight with this treatment! Anyone else eating their way through the days!?
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Had my first Taxol infusion yesterday and I feel great! Maybe it's the steroids, but I had no nausea, no pain or fatigue. I went to work for the entire day today and got a lot done. I may hit a wall tomorrow, but so far, so good.
The worst thing this week was getting a port put in. It was too sore to use for first infusion, but next week we will use it. I am cautiously optimistic about this whole chemo thing. Maybe the anxiety of waiting for it, for me, is worse than the actual event?!
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Hi scaredashell, it is good to know that you have finally proceeded with your chemo. The steroids are for the relief of pains and not supposed to make you jittery. Being a liittlr nauseous is ok as long as you dont throw up. Your anti-nauseous or anti-emetic pills tells your brain not to throw up even if you feel like it. Be on guard if you have fever and tell your doctor immediately. Gargle with salt/baking soda mix to prevent mouthsores although sometimes if your white blood or neutrophils become low, mouth sores persist. Prune juice for constipation. DRINK LOTS OF LIQUIDS.
Relax, your jitters may just be caused by anxiety.
Congrats to the other ladies who have either had their chemo surgeries or ports installed. Hang in there and may God be with you all.
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Hello Everyone: I started my chemo on Dec 13th and an injection on Dec 15th. Feeling tired but not bad. I did take a naesau pill this morning, drinking plenty of water throughout. I thought after the first uneventful day after my chemo, I would be proud k, but the next day started having a stomach ache but a heating pad helped. And, once I was able to use the bathroom, felt much better. But, still feel like I have a touch of the flu. I have a great appetite and eat lots of veggies; when I want to eat not so good, chicken chop suey seems to work well.
I have Stage II Breast Cancer and had a lumpectomy and breast reduction before chemo. I'm also scheduled for 3 more treatments, then radiation.
My next treatment is set for Jan 5th.
The best to all of you
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Confined to the house this weekend, neutrophils are 500, I'm hoping they come back up so I can have my A/C #2 Wednesday. Met with radiation oncologist yesterday and recommended 33 treatments after chemo ends. Some days I feel like I'm taking 10 steps back. I am tired of treatment already, and really has only just begun. The RO tells me it will take 2 seasons after treatment ends before I start feeling like myself again. Ok rant over just a little pity party tonight being cooped up in the house t
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Four days out from my second chemo. The fourth day was probably toughest for me the first time, so I am curious to see how today goes. So far just a lot of a fatigue. I see a couple of naps in my future already. Honestly, it is hard to take that time to rest even though I know I need to. I have always been a mom and wife first so putting my myself first is certainly a learning curve. I hope I don't sound too whiny this morning! I appreciate reading everyone's experiences. I am learning daily from all of you. Julia
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gmmiph - Thanks for the tips on grip exercises. I did some wrist curls at the gym which should help somewhat.
Cyn55 - welcome to the group! Glad you're not feeling too bad yet. My next infusion is the same day as yours.
bareclaws - just wondering how you're doing since we haven't heard from you in a few days. I'm so sorry you ended up in the hospital. I sure hope the stronger steroids, followed by immunoglobulin are helping your platelets.
SCGirl50 - I hope you're starting to feel a little better and the antibiotics are helping with your blood counts.
DizzyGirl - Glad you're feeling pretty good so far. How are you surviving our deep freeze in central Illinois?
So far, I've been feeling pretty good. I worked from home on Friday and plan to do the same thing next week if I'm feeling up to it. Fortunately I have a supportive boss and I have that option.
I've had just some minor nausea and have eaten small amounts of food more often like they recommend. I've also really been trying hard to drink extra liquid. I'm gargling with the baking soda/salt water mixture several times a day too to hopefully combat part of the mouth sores. I've been to the gym twice, gone out to eat a couple times and run some errands that were close to home. I am anxious about the delayed side effects I'm expecting such as the nausea and blood count drop. Today I'll probably stay inside most of the day. We're in a polar acrtic zone. Right now it's -2 degrees with only a high of 4 degrees expected. So, I plan to continue working on my Christmas cards and maybe to start wrapping some gifts. Take care everyone.
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Bare claws hope You're ok.
Cyn- welcome to the group.
I haven't been feeling too great. So tired and constipated and nauseous. I am taking zofran and ginger root tea seems to help. I am dreading the the 2nd treatment. Feeling sorry for myself. I miss my ittle guys. They are so young.They want to know why I'm so tired. Only my third day out from first infusion.
Gmmimp- thanks for all the great tips. Maybe in anxious and hats causing the jitters. Took my steroids today 12mg. And I feel ok.
Good luck to everyone. Can't scroll through all the posts. Just don't have the energy
Ilsunrise - stay warm inside. That sounds awful.
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Hi everyone----We have a large group and I have been reading and keeping up.
Happy for those who now have their 1st treatment under their belt. I know my 1st treatment on Dec 8th had me totally unnerved! It took 4 extra strength Tylenol and 2 anxiety pills to get me through my first treatment.
For those worrying about getting their port------I had no problems with that procedure and no pain.
Sending healing wishes to all who are experiencing tough side effects----may the days ahead be much better.
Sorry don't remember whom it was that posted the 'Saline Nose Gel'----Huge Thanks it is AWESOME!!!
As for myself, I have found the side effects to be a daily surprise. I never know if it will be a nose bleed, migraine, itching hands/feet/chest, restroom issues, numb finger tips, sick stomach, major heartburn with horrible burping, mouth sore, blurred vision, fatigue, etc...as they all seem to circle around taking turns. I try to stay busy and deal with each one as it comes. ----Must say overall these side effects are a bit better which means it is nearing Dec 29 which is my 2nd treatment. I dread it yet want to hurry and get it behind me all at the same time. And even though I am cold capping, I find myself worrying about hair loss. I keep dreading the BIG SHED and wondering if all this extra fuss and money is going to save my hair. I love worrying about things I can not control....ugghh.
Together, we move forward through this treatment and to better days! My best to all!
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