Starting Chemo in December 2016
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Shell72-----Wow! Double celebration! Happy for you completing last chemo treatment. And what a way to celebrate with a lovely winning of renewing your wedding vows. A huge congrats! Enjoy you deserve it
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Shell72--Congratulations on being done! Welcome to the other side. You deserve this prize. That sounds like an amazing celebration, you have an angel looking over you!!
Early on I was prescribed alprazolam (xanax) for anxiety. I still use it after an Epsom salt bath on Saturday nights to get a great night sleep since Sundays is the only day I get to sleep in. Yep, that's my rockin' Saturday night nowadays.
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Shell72 - Congrats on winning your prize and for being done!! Super cool! I am sure you will have a lovely day time.
I have my 4th treatment tomorrow. (2 more after that) I was worried about this one because I felt horrible for days after my last one, but I had a cold then and I think that had a lot to do with it.
The face numbing is scary! I am on taxotere also, glad to know so if I get that SE it won't send me into a panic!
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StayMom - I have the weirdest hair ever! Some is still falling out, some looks exactly as it did when I had it clippered, and some is growing longer!
Summer2016 - I had genetic testing done, but I had an aunt who had ovarian cancer as well as a grandmother who had pancreatic cancer. Very few cases are true genetically inherited mutations but treatment would be different. My testing was negative.
Shell72 - Congratulations x 2! What a relief to be done with chemo! And how wonderful to celebrate your marriage that way!
I have a question for all of you: About a week after the last two rounds I've had an episode of extremely painful abdominal cramping - like waves of pain - along with feeling alternately hot and cold. This lasts for a couple of hours. Yesterday ended in horrible diarrhea. I didn't have this after the first round. Only difference is Neulasta - chemo was actually decreased after the first one. Anyone had similar?
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Summer2016 - I am waiting for my test for the BRCA gene. I have 2 cousins that have it is why I am being tested.
NotVeryBrave - I had the stomach cramping and hot/cold with my last on (#3). I always have diarrhea after treatment, I never make a move unless I have Imodium d with me.
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NotVeryBrave & Mistyeyes-------I see both of you had family members with cancers associated with genetics. That's why I was confused by both MO's telling me to be tested. However, I understand now that as mentioned if diagnosed prior to age 50 some say to be tested and that it can determine treatment. I guess at this point it would determine if I need ovary removal. NotVeryBrave that is great you didn't have the gene. Mistyeyes hope you too are negative. As for me I must find out if insurance will cover the cost as I am uncertain that I will meet their requirements.
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NotveryBrave - Yes I have had the same GI symptoms and it looks like we are both on TCHP. This round (#3) has been much worse for this as I am even waking up in the early am with horrible stomach cramping and gas. It is really affecting my sleep. I am going to mention it again to MO next Tuesday when I see her.
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Shell72 - Congratulations! What a success story! Enjoy your prize!!!!
Had my 2nd DD Taxol today:
The Good - Only 2 more after today! I can see the pot of gold at the end of the rainbow!
The Bad - My blood work was a mess. My hemoglobin and Red blood cells were way low. The doctor said if they aren't up by next time I will have to have a blood transfusion. Anyone have any experience with this? I bought some Ensure drinks to bulk up my protein and iron in my diet.
The Ugly - Apparently Taxol hates me. Six minutes into the transfusion my blood pressure fell to 80/50 and I passed out. I woke up with oxygen in my nose and the medical team standing over me. It looked a lot scarier than it turned out to actually be. They upped my steriods and Benadryl, observed me for around 30 minutes, and then continued the infusion. Everything went smoothly after that. I don't know if this will change my treatment plan or not.
Sorry for the venting post. I am just disappointed to be so close to finishing and just now having issues. I sailed through A/C which everyone told me would be the hard one. Taxol was supposed to be easy.
Have a great rest of the week!
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I made it half way through TCHP!
After the first 2 treatments I had a lot of diarrhea and cramping and controlled it with Immodium. My nose was also bleeding. Blood still looks ok, but I also give myself the Neulasta shot 25hours after the infusions to boost WBC, which helps a lot. So far no issues with bone pain from Neulasta.For the second treatment I have stopped taking the steroids on the day after chemo and feel a lot better. I just take them the night before, then just before the infusion and then one tablet in the evening.
This time (third) I also took benadryl on the evening after chemo and then next day too and somehow I haven't had diarrhea and cramping this time - not sure if it is due to the benadryl or not. It used to start on day 3 after infusion and went on for 3-4 days. I also had my period for 2 weeks and it has finally stopped.
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Notverybrave - were you tested only for BRCA1/2 or did they test you for more cancer genes (TP53, PALP2, CHEK2,...)?
In case insurance does not pay for additional testing it is possible to get the testing for 30 cancer-related genes for about 250$ from Color Genomics.
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I was tested for a panel of something like 28 different known mutations. It was called "Ovanext" through Ambry Genetics. I think that a lot of insurance companies will cover the testing if you meet with a genetic counselor first - both to determine need and coverage and also to actually counsel you about the pros and cons of testing. I ended up only paying a copay for the testing and the counseling.
I'm so tired of taking (or not) so many drugs. I feel like it's too much for my system. I worry about long term effects from the chemo. I'm meeting with the NP at my MO office today to discuss how to proceed. I really feel like I want to quit the chemo and just move forward with the rest - whatever that will end up being.
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Not Very Brave and Dizzy Girl,
I am on TCHP as well and we are all at about the same spot in treatment. My hair is a bit crazy also, lost most of the hair on my head but what is left appears to be growing. What I am surprised is that I still have hair on my arms, legs, nose etc. Do you still have yours or did you lose all body hair as well? Also I have read that it might start growing back before the end, have either of you seen any new growth? I have not, but I realize it is probably too early since we are midway through.
The gastro side effects are the worst, I am right there with you on struggling to manage the effects. I have had those issues from the very first treatment. The bad thing is that the Herceptin only is also giving me problems with the Diarrhea. I have Herceptin every Friday (30 minute dose) until the end of the chemo which mine will be March 31st if everything stays on track. Then I start every 3 weeks (1.5 hour dose) to the end of the year. I am a little concerned about the larger doses of Herceptin starting, because I am having reactions to the smaller ones. Does it bother either of you? On the initial infusion day, the Herceptin is the only drug I reacted to at the doct. office. I had severe chills and my body jerked like a fish out of water until they were able to get it under control. It took two shots of Benadryl and about a half hour for it to stop. That was a larger dose that day. Since then I have continued to get chills in the evening after treatment and major gastro issues on the day after. I am also worried about the heart since I don't seem to be tolerating it that well.
Since it is chemo first, have you discussed surgery options yet? Also have you seen any results from the chemo? At my last treatment the doctor could no longer feel my lump, which I am very grateful for. I hope when it is time for surgery there are no living cells left.
I completely understand your worry about the long term effects on your body. I am having the same struggles wondering what is going to be left after chemo, surgery and radiation. I am just trying to focus on the end of March and that there are three more to get through.
I have been working as much as I can during treatment, but there are days when I am in such a fog it is hard to get things accomplished. Are either of you working through it?
Congrats to those who have finished - so happy you made it through!
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CCNC - same hair issues for me. Head hair is mostly gone but what is left is growing. Pubic hair is mostly gone and also about half of the leg hair.
Can you get Herceptin as a subcutaneous injection? The injection takes only 5 minutes and maybe the side effects are a little different this way?
I get Herceptin as an injection in my thigh just after the Taxotere and before the Perjeta infusion.0 -
Shell72-Congratulations! So happy for you!
Yesterday I got the answer as to why I was having shortness of breath and chest pain. It wasn't the Taxol causing it after all. I was sent for a dye study because my port wasn't functioning properly for my mid counts and come to find out my port snapped and a piece of it was in my heart. I had surgery last night to get the piece out and had a new port placed. I'm feeling so much better today, no pain or shortness of breath. Hoping my next Taxol will be better. My MO said he is going to give me more steroids along with stronger pain meds to help with the bone and muscle pain
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Argynis
Thank you for the response about the shots. I was not even aware that option was available. I will ask about it at my next visit. So sorry to see this is your second round with chemo, hoping for the best for you. Sorry I got a little long winded earlier, it helps to see if other people are experiencing similar things.
irishmom3, that is really scary about your port. Glad they figured it out.
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Irishmom3---------- So sorry you had that port issue. I agree with CCNC that is beyond scary with it in your heart! Happy it turned out ok and you feel better!
Anyone get shortness of breath with your steroids? I had to take my first 2 steroids this morning for my chemo tomorrow and noticed by a few minutes later that I had shortness of breath again and a horrible pulling from the bottom of my ribs down past my belly button and around to my back (seriously as if I'm being pulled apart). Happens every time I take these pills. My port is on my right side so I don't think I have a breakage. Just extremely uncomfortable.
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CCNC, Not Very Brave and Dizzy Girl- I am also on TCHP = I get it all intravenous, did not know about the Herceptin shot. I just had my 4th treatment today, 2 more to go and then just Herceptin I think to December. Plus surgery and I think radiation.
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summer2016- had issues on steroid. I took dexamethodzone and had bad heart palpitations and shortness of breath. I was told to take less the last round and made a difference. I am on to taxol now and I think i only get them in my IV. I don't want to pake them after this time but I don't know if I have to. I'm so nervous about tomorrow and first taxol. Should i bring ice for hands and clear nail polish? I read to use clear nail Polish and not dark.
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Chickens--I started taking a B complex (B6 and B12 are important) and after my 3rd infusion and noticed a shortness in the duration of leg fatigue and shortness of breath. I was already taking iron supplement. I make sure I take that without milk since calcium interferes with iron absorption while Vit C helps with it.
Irishmom--holy moly!! I always feel sorry for one of us who have setbacks. I feel like we are going through enough not have to deal with complications. I'm sorry you had to go through that but glad they got it!!
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Mistyeyes - good luck with the 4th one. You are about a week ahead of me, mine is next Friday. Hope the SE are not too bad for you. I have been surprised that even though the 3rd hit faster, I pulled out of the misery a little better this time. I am hoping 4,5 and 6 repeat that pattern. The first two so far have been the worst.
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IrishMom3 - Geez! If it's not one thing ... You sound so calm telling us about this. I'm pretty sure I'd be freaking out.
CCNC - I can't really tell what my hair is doing. I think that some is growing back, but I never lost all of it anywhere. It just looks really sparse. The sections behind my ears are the thickest and that is growing probably normally, but I still have stubble that's the same on top. Definitely less body hair everywhere but biggest loss is pubic and underarm hair!
As far as surgery - I haven't felt the lump since after the first treatment so that seems promising. I'm leaning towards lumpectomy. I'd really like to keep my body intact as much as possible. And I don't want further surgeries down the road. I have lots of questions still about all of the treatment left and meet with the BS before the last chemo.
I met with the NP at the MO office yesterday. I was considering stopping chemo due to all of the side effects and concerns about life long problems. I feel like I've had a worse time with the second and third even though the first one put me in the hospital. I think I'm going to try one more - substituting Neupogen for Neulasta - and see how that goes. I get all four drugs once every three weeks for six rounds. The plan is to continue Herceptin every three weeks for a year.
I'm not working during this. I'm amazed at those of you who are! I'm an RN and typically do home care visits. I just couldn't imagine how I could do that while going through this! Of course, I miss it sometimes and I sure miss a paycheck.
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glad those with some scary and difficult side effects feel better
Anyone using systaine drops for eyes?? In have such dry eyes and making reading things blurry.
On the subject of ovaries, my doc said she would agree to remove ovaries. Said t was a 30 minute procedure and worth the operation. She said the drug I would be on Fernera is for post menopausal women versus the drug tamoxifen for pre. It'sa better rate for non recurrence. Have to discuss more. I am premenopausal and 44 so that has something to do with it
Notverybrave - I am so happy to hear the Tumor is melting away. They gave me a choice surgery before or after chemo and I chose before. I had three three tumors and needed needed a mastectomy regardless of chemo outcome. am wondering if the chemo is actually working. Goes only time will tell.
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Just completed last Taxotere/Cytoxan yesterday! Side effects are hitting me hard and fast this time but hey maybe they will leave me quickly this time. Will get to have my port removed in 3 or 4 weeks
I asked about having had a port and Oncology Specialist in Park Ridge will only give Taxotere with a port because it is so hard on the patient's veins (that is their take---I believe it makes it easier on patient and nurse for the infusion). Just hope it is removed as easily as it was placed.Scaredashell07------So sorry for late reply as I was not feeling well Thursday night had to get up at 5am for my trip to chemo on Friday Feb 10th. Unfortunately, I have no choice about 9 days of steroids due to way too much inflammation from TC. I posted a pic of my badly burned hands earlier in the thread. I didn't realize the bottom of my feet were the same
Guess I must put up with shortness of breath for now---it sure is uncomfortable! --------As for your hands & feet, my nurse said they didn't believe that icing nor any nail polish help. It wasn't until my hands were turning beet red on third treatment after I showed them a pic of my finger burns that she brought me gloves filled with ice. However, I believe it was more to make me comfortable during treatment as they believe in the steroids in fixing that problem if you have it. They said they don't think nail polish does anything-----I read somewhere to use black nail polish so I have done so each treatment. At this time my nails have developed a tinge of yellow like you get when you have worn polish on them too long. My nails where sore to the touch after my 3rd treatment. At this time, I do not know if the dark polish is working or not. My goal was too try to keep my nails from coming off. ---Time will tell as will with my hair and cold capping with Dignicap. So far I have a little more than half of my hair. A bald spot on top and some spots throughout and tons thinned out all over. Just glad that I was able to save some of it. And glad that Oncology Specialist offered Dignicap that was a machine where I did nothing, instead they did it. Simply placed a silicon cap with a foam piece over and Velcro straps (chin strap is painful). Then, hooked the cooling lines to the machine turned it on and it slowly cools to necessary temp. Much easier than cold capping but it isn't offered everywhere and it should be at $325 per treatment it is less than some of the others.------Hope your treatment went well for you!!!Wishing wellness for all of us!
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Congratulations Summer2016!! Hope you glide through the side effects with ease and start getting your energy back. I'm 3-1/2 weeks PFC and today is the first day energy wise where I feel like my old self. It's a glimpse that things will get better!
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congrats summer. So happy for you to be done. Hope the side effects subside quickly and you can get back to your life again.
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Pamela23------Awww thanks I needed to hear that this morning as treatment #4 side effects are hitting me fast and hard. Hoping they will leave quickly. Having to take 6 extra days of steroids is very hard on me (severe heartburn indigestion, nausea, headaches and now Neulasta pain). Hearing that possibly in 3 weeks I will be feeling more normal is the boost I need! Thank you
Scaredashell07------Many thanks for the congrats! That last treatment was the hardest to sit through guess I was just done in my mind and tired. You too will be at the end soon!
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thanks so much for all the congrats ladies. I'm feeling so tired and have constant hot flashes today so hope my makeup will stay on tomorrow for the vow renewal!
Congratulations Summer for completing chemo too. Hope your side effects pass quickly.
Hang in there everyone. Each day is another closer to the finish line and hopefully the return to a normal uneventful life. I can't wait to be able to just go to work and not plan my whole life around cancer.
For those starting rads next I'll catch up with you most likely on those threads.
Thanks so much to all of you for your thoughts, encouragement, prayers and friendship, you make the fight easier to battle
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Congrats on being finished Summer2016!! It's so exciting to see the list of us finishing chemo is starting! I am starting the first of 3 Taxotere this week and don't have a port so hope my veins hold up! They have been sore from my first 3 treatments. I'll also be icing my nails. It's just done without question at the hospital I go to. I find it very interesting how the different hospitals and drs have different beliefs and practices. I would really like to avoid nails falling off!!!
Pamela glad to hear you are bouncing back!! Any hair growth yet?
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shell72. Congrats on your wedding renewal. Hope it's a great day!
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StayMom-----Thank you for the congrats! I agree so happy to see us all moving to the end goal! Today, I noticed thickening and lifting on a few of my nails. Sure hope I don't lose them. I wonder if I had iced hands and feet if I would have not had such problems with burning, peeling skin etc....I wish you the best with your veins. I believe Pamela23 didn't have a port and completed 4 rounds of TC using her veins. A few others too, however I lost track. I did well with side effects until round 3 so good to know you don't have 4 rounds!
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