Chemo starting April 2018
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My wife also gets the runny nose from the TC. She has it again this time.
The counts seem to be bottoming out. She's very tired and achy from the Neupogen. I guess that's good, because the aches show it's working. Just hoping for no fevers.
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Hi All,
Playing catch up - a friend visited over the weekend, so I haven't looked at the board since I posted Wed (sorry, cleaning and grocery shopping, etc). She's flying home now so here I am. I was surprised at how well I did while she was here. When we planned this, I was afraid I'd be on the couch the whole time, but we got in some hiking yesterday and also did a craft project at one of those sip and paint shops. I'm tired but okay. Hoping that means my RBCs are up again. My fingers are tender but basically okay. I'm ready for T #8 on Wed. Still have the occasional cough from the T and a stuffed/dried out/bloody nose. Plus, my mouth is so dry and I can't seem to change that no matter how much I drink. *Watch out for your teeth if your mouth is dry = remember, no sucking on sugared candy or drinking lemon water, etc.
Fdwithfurkids, great news about your tumor shrinking!
LIFE (Julia) and everyone, I plan to continue checking in on this board and posting updates for a long time to come. I feel like we've all braved this together and it's bonded us. I'm not ready to let that go yet. Plus, I want to know how everyone is doing in the future. Please keep posting, y'all - I'll keep answering!
Hiking lady, thanks for the info on supplements and protein, much appreciated.
DebAL and Maggie, good luck with your surgeries this week. DebAL thanks for the supplement info, too.
Yay for Janice and you, Engine! So hoping she has no SEs from this one.
InnaB, I've been taking 30g l-glutamine daily for neuropathy and also the Claritin D daily and have had no pain whatsoever on T (of course, you're DD, so that may be different, but the onco nurse mentioned that people who take l-gluatmine for neuropathy seem to have less/no pain). Also, I just put a light sock on my hands and put them into ice in a bin that I hold on my lap because the gel packs don't stay cold enough (they do on my feet but not my hands).
Ingerp, congrats on finishing on Friday!
Urdrago, are they giving you the T too fast and that's why you have headaches? Or maybe it's super-dry sinuses? Sorry either way!
Frog, hoping this lowered dose of T #11 will be easier on you. Almost done!!
Hugs to everyone. If I missed you in a comment, my apologies - soooo many posts to remember... Wishing for no SEs for those of you still on chemo and an easy recovery for DebAL and Maggie.
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I do take Claritin. It worked for Neulasta, but it doesn’t seem to be working for Taxol. All my doctors are against l-glutamine, including integrative physician. I am so confused about this response, I just don’t know what to make of it. Acupuncture went fine, will go to another session next week.
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InnaB, are you taking a B complex vitamin? Look into it if not and ask if it's ok. I hope you are feeling better soon.. hang in there
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InnaB, I agree that claritin doesnt seem to help on Taxol.
Gawarrior. So glad u had a good time with but friend, it's great to know u feel good...I dont beleive it's how fast which is being given thru an hour, but I'm going to ask at infusion on Thursday.
Maybe it is bcuz my sinus are so irritated..
I'm starting to get more dark hair at the roots. Woohoo, I was scared it was going to stay white..Sigh, when does eyelashes and eye brows come back??
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Hi all. Been a busy week of work for me. I have tx #6 on Tuesday and talk with MO about what's next.
Although my cocktail has been different than all of you its nice to know it's the Herceptin I'm getting that makes MO want an ECHO every 3 months.
The Claritin helps with the Neulasta SE. My constant achy muscles is from the neuropathy. I found that Epsom baths do help, but the last thing I want to do lately is get in a warm/hot bath in this Arizona summer. It makes the hot flashes worse.
Ingerp- I LOVE Dowton Abbey. I have watched the entire series 3 times.
Engine- fingers crossed No Fever
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InnaB, why are all your docs against l-glutamine? Clearly I want to know because my MO advised me to take it (and do the icing), but I want to avoid it if there is a good reason. Thanks!
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GAWARRIOR, not just against l-glutamine, they are also against B complex during chemo as well. My MO is saying that the benefits of l-glutamine during chemo aren’t worth the risk of it interfering with absorption of the med. She said they used to give buckets of it to the patients and then stopped when some studies didn’t find any benefits. I don’t know what to make of it because it looks like your MO must have read some other studies.
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Debal, thinking of you as I know your surgery is in a day or so. Stay strong and best wis hes. Maggis,you as well, hope to hear how youboth are soon after.
GAW, you are sounding strong, glad for you, nice that you some friend sharing time. Hi Life, hang in there! We have all connected, and you all have been a lifeline for me, I'm always checking on here and I do really care.
FDwith kids that is such great news!,! So so great it's shrinking. Engine, hope Janice is improving, and you both must be so relieved at 4 treatments instead of 6 . Inn a, Hoping you find relief for pain soon.
Much hope, care and concern for all
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Taxol 11 day 2.
Very tired inspite of the reduced dose. I did not sleep well last night with the hot flashes and all that could be making me tired as well. My port acted weird so after three strikes I got chemo through the vein. MO said we will do the final Taxol through vein as well. It took so much time at the clinic yesterday, it was/is quite confusing as to what is going on with the port. It was more than an hourafter we could finally begin the treatment. And my port site is so sore.
Planning on a nap right now. Hoping for milder SEs for all of us still going through chemo.
All the best to the ladies heading out to surgeries and radiation.
And the ones done with it, take care of yourselves.Take rest and I hope you feel better with each passing day
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Frog you are so close to finishing!! Hang in there. Sorry about the port acting up but at least you got treated. Hope things are calming down for you today.
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Frog, so for me if they cannot draw blood with three sodium flush syringes, whoch includes different sitting/ laying postions..than the nurse put in a medication let it sit for half an hour to hour and reattempt blood return using another sodium syringe.
That sucks that u have pain at port. Take care of urself ..hugs
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See thats the thing, they could draw blood but I was very sore when they pushed the saline in. The last time they tried I felt a burning sensation which felt more than just skin deep. So they decided to ditch the port, they were not sure what was going on and did not want to take a chance. My port is very deep and keeps moving. The nurses and me were anyways annoyed with my port. Its always been a task to get in. That being said, I am very glad I had it. I met a lady who is a pancreatic stage 4 survivor. She calls the port her badge of honour.
Feeling much better today. One more left.
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Frog, keep going forward, one more! Praying it's easier.
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Djt and GAWarrior, thank you for your good wishes for my upcoming exchange surgery next Wednesday. I’ll be getting my port removed, too. I’m sorry that several of you have had such problems with your ports. As so many of you are in the home stretch for chemo, I hope you have no more SE’s
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so I'm going to share the two pet scan pics I have. This one was done 7 days prior to first tx 4/17.
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here is the updated scan taken 2 weeks ago 7/23.
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Wow, FDwithfurkids! I'm not sure what I'm seeing, but it has clearly greatly improved in the second scan. Good news - congrats!
Frog, so sorry you aren't feeling better with the lowered dose of T. Hoping that your fingers are a little better, at least? (I thought of you this morning (actually, middle of the night) when I was up and down with hot flashes, which seem to be happening far too often now - ugh). I'm so, so excited for you that you only have to endure wonky ports, infusions and SEs one more time.
Engine, how's Janice doing?
InnaB, thanks for clarifying re: l-glutamine. I go for T #8 this afternoon, so I'll ask about it. I don't want it to interfere with absorption of the chemo, but I reduced my dosage this past week and immediately got a mouth sore (l-glutamine helps those as well as with neuropathy), and I haven't had the SEs in my fingers that others have had. I wish MOs were all on the same page.
Urdrago, good luck with you T #10 tomorrow. Keep growing those fuzzies! Mine are not cooperating - I don't see anything growing up there...
On the happy side, my niece gave birth last night to her first baby, a girl they named Arya. She had a high-risk pregnancy from the start - many weeks of bed rest, bleeding off and on (prior miscarriages), then pre-eclampsia the last few weeks. Arya is healthy and her vitals are strong. So happy for them (and relieved).
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Awww--GAW--congrats on the new grandniece! I feel like we're in a bit of a baby boom. I know women due next Feb, Mar, and Apr. Happy times!!
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GAWarrior, congrats on your grandniece! Such great news!
FDwithfurkids, I think your last Pet scan looks good, right? Are all the Mets gone, or there are still some left?
Frog, Urdrago, you guys are so close to finishing! Can't wait to be on the other side already!
Maggie, good luck with your surgery!
Engine, hope Janice is feeling better.
Finally pain stopped on day 8. Now depression settled in for no apparent reason. I am waking up in tears, and it only goes downhill from there. I think Life reported the same side effect from Taxol. It looks like DD regimen sucks big time.
Wishing everyone a good week!
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Hi everyone,
FDwithfurkids: Wow. that is an amazing difference. This is wonderful progress, right?
Thanks for asking about Janice, InnaB and GAWarrior. I think we're still at the bottom of her counts. Tomorrow is one week from the last chemo so things should start coming up soon. She's pretty tired and doesn't eat much,but, praise God, no fevers so far. I checked my emails and messages and I noticed that the last time the fever developed at the one week mark, so I am holding my breath we get by without one this time.
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Hello all the lovely ladies from April, I can't believe it's now August, my time flys when your having fun, NOT. I haven't posted for a long while but I have been reading all the posts and glad to see everyone is progressing with their plan, I'm sorry for you ladies that are having a tough time with treatment but you will get through it. I had Taxol #9 yesterday, down to 3 now on the chemo front. I honestly wouldn't have got this far without everyone on this site, your stories, tips and honesty have made the journey more manageable. Thank you from the bottom of my heart. I know I'm not on my own x
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FDwithfurkids, I bet there wasnt enuff words to explain ur emotions after seeing that.. Wow, that's incredible!!
Weeeddi, ur right behind me and how are u feeling? Honestly I feel like I'm getting more engery as I'm getting closure to the end..
Gawarrior, wow hoo grandniece welcoming celebration..the little one are so fun to shop for , they have such cute clothing!!yeppers , T number 10 tomorrow and more comment today from coworkers, amazed to see changes in my hair. I can see More color coming in and I can squeeze my fingers together catching strands of hair on my head as if I'm checking length. I notice the forehead is got more stubbles and is shorter than back. Also top of head the stubbles are still standing at attentuon..lol
Engine, glad ur wife is managing thru this round with sleep. But make sure she eats small amount of food and keeps hydrated( pee clear or lt. Yellow.) Maybe she would prefer protein shakes like ensure, or similar..prayer ...
InnB, I had downs as well and decided I need out of the apartment a breathe of fresh air.. of coarse that's after I cry...
Ingerp, ive noticed as well, must be a baby boom happening..lol
Frog,sorry ur going thru horrible SE's and discomfort..has the port pain calmed down yet? And has MO given u any ideas after last chemo how to help heal ur fingers?.. hoping the weekend with rest gives u the more strength.. be kind to urself..hugs..
We are strong and survivors! I consider myself lucky to have found each of u along my journey..
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WOW! I have missed a lot! Going to try and remember everything I read. I'll stay up front if I forget someone I'll apologize right now. This is going to be a long one I can tell. LOL
Funwithfurbabies. I am not sure what I'm looking at either but it looks like it's really good news for you! Congratulations! Looks like the cocktails that you been taking through chemo world have been working quite well.
Deb and Maggie the best of luck with your surgery this week. May you both have a speedy recovery and back on your feet in no time.
Engine prayers that Janice gets no fevers this week and that all is well and that she starts feeling better and better everyday!
Dee are you starting with radiation next? I'm sorry if you posted this information I just didn't see anything out there.
DJT and Frog how is your foot neuropathy doing? I'm still struggling with the Sensation that I have rocks in my shoes along with all the other neuropathy feelings I had throughout my body. They don't just seem to be as bad though. Maybe they're going away
Inter, Duffy and Frog you guys are almost done with chemo world! Yea!! Frog how are your hands doing as well as your energy level
GAWarrier that's pretty cool having a friend come and hang out. Sounds like you had a great time. My doctor approved L-glutamine and vitamin B6 the entire time I was on taxol. Claritin did not help with taxol pain. I don't know if the gluten and B6 helped with the neuropathy or not as I still struggle with some issues in that area 5 weeks out.
InnaB if I'm not mistaking you should be down to two more! Yes I am the one that posted that DD taxol cause depression. I was so weepy shortly after each treatment. And the pain was crazy ridiculous. I would still have shooting pains throughout the week after the big pain was gone. It has started letting up some. I still have feet issues but I had that hand and foot and I think that just really cause that. But I feel things are getting better as far as pain. I'm going to try this acupuncture that everyone keeps talking about and see if that helps with my neuropathy as well.
Undergo I didn't have any headaches during taxol but I had them really bad during AC. How many more do you have left. I developed sinus issues during AC and believe it or not they still are around.
I'm 5 weeks out from chemo and glad to say my energy levels are getting better and better everyday. I struggle with a little foggy brain sleeping. Now that I'm taking anastrozole between the joint pain it causes and the hot flashes sleeping still is kind of tough. Although I did take a couple of ibuprofen last night and started drinking magnesium calm. That seems to be settling my body down some what where I can sleep a little better. However it does not help those crazy hot flashes. I really need to break down and just take something for sleeping. I told myself the other night you went through chemo you can handle a sleeping aid. LOL I'm such a sissy lala when it comes to medication. My oncologist did recommend r e l i z e n for the hot flashes. I'll let you ladies look it up and ask your oncologist. I have not tried them but believe me it's getting closer and closer every day. I have started doing rehab exercises with a lymphedema specialist to strengthen my arm that had the lymph nodes removed. I went to the gym and decided I could lift an 8 pound weight over my head and strained my arm. I guess you have to baby step back into that kind of stuff. I'm also started working my part time job again cleaning the medical facility after work at night. However, being away from that place for the last 4 months I really truly do not miss it! Another thing I've noticed. I must have just been so busy with life and working and going going going that I didn't realize that my poor little house is just packed full of nothing but junk that really needs to go find a new home! That has been my little project since I started feeling better and it is turned out to be a bigger one than anticipated. LOL I read from somebody's post along time ago that you tend to prioritize things and get rid of baggage after going through something like this. You know I'm believing it it could be true. Before I forget it was explainef to me that the reason why the nose run so bad after chemo is because we have no nose hairs. My nose has been bloody and running and dry. I have started using a product called a y r saline nasal gel. Works like a charm and my nose is almost healed up.
I'm starting to get more and more fuzzies on my head and it looks like my hair is going to be coming in salt/pepper color. Also believe it or not I can see tiny little hairs where my eyebrows fell out just last week as well as teeny-tiny fuzzes on my eyelashes!
Hey sorry this was so incredibly long. Had a lot to catch up on. I just want to say it was really nice to read how most of you are going to keep coming back to this board. I look forward to our futures together as we get stronger and healthier each day!
Julz
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FDwithfurkids, i can't read xrays, but the 2nd scan looks very cleaned up of anything bad that was in the first one, that was not supposed to be there. That is such very very good news for you!! Wow, your treatments worked AMAZINGLY!!! Congrats on getting to this better place. 👍👍
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Thanks ladies. Sorry I forgot to write about what you’re seeing. The first pic with all the really black spots are cancer. All the bone Mets, lymph nodes, sternum and breast mass. Being as dark on the photo means it’s heavy with cancer. The second pic shows that while it’s not all gone the darker gray is where the cancer still is. But it’s not as intense as it was. Still some on the pelvis, femurs, shoulder (most likely lymph) and vertebrae. But the breast mass is barely viewable and all the lymph nodes are clear in the trunk of my body.
The chemo is definitely working. I have 2 more treatments added. MO reduced the Taxotere due to the neuropathy. After that another scan. Then most likely continue tx with Herceptin and perjeta only. Not sure how long though.
The breast mass shrunk from 3cm to 1.6cm. I’m so excited. My MO told me he has been telling his colleagues about it and how exciting it is to see how well I’ve done.
My Neulasta just kicked in tonight. Within 40 minutes of the injection I started feeling crappy. Luckily it tends to only last the night. The Claritin takes care of the rest by the morning.
Thank you all for the support and cheers. Hope you’re all doing well. Glad to read about babies and friends and being down to final tx with minimal SEs.
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Thanks everyone. She's still pretty tired and now has thrush, but it's a week out, so things should start improving. Hope so and soon. She's been eating small amounts and drinks Atkins protein shakes every day.
FDwithfurkids: That is really amazing and it must be so encouraging. I remember when Janice had leukemia 16 years ago. One of the symptoms was sores like infected paper cuts on her fingers. The oncologist said it was leukemia cells coming through the skin. Within one day of chemo, the sores had almost disappeared. The doctor was very surprised and said it was clear evidence that the chemo was working. He brought the nurses in to look
Obviously, the same can be said for you with the incredible difference in your scans. 0 -
FDwithfurkids
Good Gravy! I just realize while reading your post just how horrible I screwed up your name on my post. I am so sorry!
Now that you've explained the difference between your scans and I understand it more I'm even more emotional and happy for you!
Congratulations again!
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FDwithfurkids thanks for helping us understand your scan pictures, you are just amazing ! Im astounded by such dramatic results, VERY excited for you.
Engine, i feel so bad for your wife having such SEs at every turn, the protein shakes sound like a great nutritional idea. I got thrush with every chemo, and it was awful. Hopefully, whatever RX she was prescribed will work quickly.
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Hi Djt,
Thanks. That's why the oncologist said let's stop at 4 rounds of TC instead of 6. This last one seems worse, but I know the effects are cumulative.
She's had low grade temps since last night, but still under the 100.4 threshold. It was 98.7 about an hour ago. Hope it stays there. I wanted to call the MO and ask if we should continue the shots for another day (We did the last of the precribed 5 yesterday) or two, but Janice says she is starting to feel better.
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