Choices
Comments
-
Good morning all!
Well, I am going tomorrow which will be my last chemo. I am completing 7 of 9 treatments since no studies have shown any difference in completing 7 or 9 infusions. I am at peace with this. The neuropathy in my fingers and toes is a lot. The fingertips are numb and hoping that will subside with time. Shortness of breath remains a concern but is due to the chemo. I went for 3 weeks due to covid without chemo and everything mostly returned to normal including walking and shortness of breath. My lumpectomy is scheduled for Feb 28th. There is no evidence that shows getting a mastectomy vs a lumpectomy has a different outcome. It appears that they will have the same outcome.
For Claoh, I am glad you are on the road to healing. Remember the chemo is the cure. Cold cap from Amazon is the best for after Chemo headaches, mittens and booties for sure.
For Sadiej, haven't heard much from you. How are you?
Lovesprime, glad that you are healing, even though your road seems difficult. How are you sleeping these days?
We are all on the same path to recover ourselves, just different roads to follow.
0 -
Glad you got the head cap, mitts and booties. These should help and minimize potential neuropathy in fingers/hands and feet. Cap may help in minimizing permanent hair loss. Yes they are somewhat heavy due to gel packs. I have a large insulated zipper bag that I keep mine in and for taking to the infusion center. It helps to keep it all together. Here's a photo of me all decked out.
0 -
So, yesterday was 17 years since my mom died from breast cancer, my first such anniversary since my own diagnosis. I was only in mid-thirties at the time. As my third week since surgery is coming to a close, I'm really struggling with boredom, depression, and an inability to pay attention to anything for very long. I'm finally realizing that these 8 weeks off of work are a small fraction of the time it is going to take to recover. My body (and my mind) have been through so much in the past 10 months.
I mentioned a blog I found a couple days ago and I really appreciate how articulate and brutally honest the blogger is, not only about her experiences with DIEP surgery, but all aspects of breast cancer. She gets it. Yesterday, I found her post on being angry/frustrated with people who say so and so lost their battle with cancer, as if they are losers. If only they had fought longer or fought differently, they would have "won". And a different post about outside pressure to be positive. It's totally fine if a cancer patient chooses to be positive but they shouldn't be told how to feel by others. Here's a portion of the post:
But again, what does, just stay positive, even mean?
It might be more about suggesting that cancer patients keep quiet about how they’re really feeling/doing.
Perhaps when people say, just stay positive, they really mean…
It might be better to keep your cancer truths under raps; no one really needs to know your truths, do they?
It makes me uncomfortable to hear all those gory details.
It’s too hard to be around you if you’re not upbeat.
I can’t handle this if you’re not positive.
You should be over this by now, shouldn’t you?
And as for the other part of this discussion, helpful suggestions offered as to how a cancer patient is supposed to go about staying positive seem to be lacking.
@marlakeeth Thanks for checking on me. The day after my friend arrived, I started being able to sleep at night. Still not taking naps very often but getting, on average, more than 6 hours a night I'm sure is helping with recovery. I'm really glad for you to have one more step behind you treatment-wise.
@RocDocVic Thanks for sharing your photo. Wishing you all the best.
0 -
So sorry about your Mom. My mom passed away in a car accident when I was 16. You never forget nor get over it.
I just hope the photo helps others since the equipment can be somewhat intimidating. I don't know how well it works but I thought it was worth the cost. It's not cheap. I think I paid about $70 for all, not including the zipper insulation bag, on Amazon. The bag I had from my trips to Mexico, grocery shopping and beach trips. Praying the neuropathy and hair loss is not permanent due to docetaxel, Herceptin and Perjeta.
0 -
Lovedsprime,
I love all of the blog posts, "But again, what does, just stay positive, even mean? " this is right on the money!
For me, I just finished chemo #7 and theoretically should complete all 9, but I don't think so, I'm not sure going to have the other 1 or 2 will make much difference in the long run. The oncologist is encouraging me to take them, but I am tired of the neuropathy and shortness of breath. Some within medicine say take them all, and others with no medical background say don't take anymore—such a hard decision to make. Will see how I feel next week.
take care ladies
0 -
FWIW, I'm ER/PR- and HER2 3+. Lymp nodes clean based on MRI, but will be verified with surgery. Don't know if it will be lumpectomy or mastectomy until February after MRI and 6 cycles of chemo is done. Surgeon wanted tumor to shrink to at/less than 2cm. Post 3 month cycle Ultrasound showed it shrank 1cm from 3.3cm, and Surgeon was hopeful that lumpectomy and rad could be done. I have small breasts so not much tissue. Hoping no residual cancer is found, or at least very little and no spread to lymph nodes. This would open up big can of worms for switching from Herceptin and Perjeta to T-DM1 Trojan Horse chemo drug attached to Herceptin molecules. 14 cycles of 3 weeks. I have a lot of technical questions I want answered including how they plan to monitor for residual cancer and if tests are covered by insurance. I've read it depends on your stage. So ~1.5 yrs total treatment. Ugh!!!
1 -
Loved your picture Roc. Not sure I'm going to use mine. Yesterday at the chemo clinic they mentioned the cooler chest would not be allowed in the chemo room and someone would have to be there to transfer the cold packs. Have a call in to see if I heard right. If so, plan to send them back. They also mentioned having ice packs available for use.
One thing I learned is that there is Benadryl in one of my cocktails so I am not allowed to drive myself home. Wasn't planning to as my husband will be with my, but now I figure I may be quite drowsy after each infusion. That is good to know to expect that.
Also enjoyed the blog input Loves. I am thankful people are encouraging yet I say you have to compare apples with apples. Not everyone has the same regimen to follow or length of program. We all have to make these hard decisions for ourselves and have peace which is what started our journey together.
I was telling my husband that I am surprised my two closest friends really haven't visited much. It's been over three weeks since they stopped by which is very surprising. We see each other out and about and for a few scheduled gatherings, but not spontaneous.
0 -
Claoh,
Yes Benadryl is part of the medications used, I have to take 50 mg one hour before infusions. It does make me sleepy during the 1 hr and I usually just sleep. My husband drives me there and back. Not a problem and usually awake on the ride home. Too bad that they will not allow the cooler in the infusion room. Interesting that they have ice packs for you to use. check it out and post what you learned. Esp use them for your hands and feet during the infusions to help prevent neuropathy in them! Good luck!
0 -
That's very odd that they don't allow a cooler or an insulated bag. Most every Cancer Center I've heard of does because of the need to use the gel packs. It could be you're using a cooler rather than a bag. Mine has no issues with it. I can keep the insulated bag near my chair and put my booties, cap and mittens on just before they set up the docetaxel infusion. Most of the nurses will even help you with them. For people who don't have the gel packs they do offer ziplock baggies with ice, but they only are good for your hands. Hard to wrap your feet in them. I also can keep snacks etc. in the bag if I want. You may want to look for an insulated bag. They have them for picnics, grocery shopping and other uses. I freeze my gel pack booties, mittens and cap the night before (the entire thing not just the gel packs) so they're good to use when the docetaxel starts about 3 hrs after I arrive at the Center. I just put everything on and they set up the IV bag. It's the last drug they give me and it drips for 1hr.
0 -
Another post-op appointment yesterday. Another drain removed, leaving one. They continue to say things are healing well and it's not that I disagree, it just still looks so bad to me. I know it takes a long time to heal and recover and I know there's still swelling, etc. Just feeling discouraged.
As long as this one remaining drain doesn't produce over a certain threshold, it will come out on Friday, 28 days after surgery. I'm able to start straightening up for small stretches and I start back to OT tomorrow.
How are you wonderful women doing?
0 -
Love, glad to hear you are improving. You mentioned "straightening up" and that reminded me of my sister in law when she had breast reconstruction. She was bent like an L for some time also. Is that what you are experiencing? I remember how difficult that was for her, but she did prevail as you are doing also.
Had my first infusion today and all went well. Did nap more than I expected but also read a little and gamed on my kindle some. I had confirmed Tuesday that the ice packs for the mitts/gloves/cap did have to stay with an independent individual who would help me trade them out. So I experimented with putting ziploc baggies of ice in the mitts and boots Tuesday evening and was satisfied with that. The nurse did put ice in my zip lock bags just prior to starting the taxel chemical which i slipped into the pockets of the boots/mittens and it worked very well. One bag did leak but that's not bad - three stayed dry!! : ) Apparently my facility got so busy they set that policy because of limited space between chairs.
Really not feeling any different. Got a shot in the stomach for nausea that is supposed to keep it at bay for the week. That would be awesome. Just went back to read your experiences from days 3 and 4 on our posts and wonder if tomorrow will kick in the side effects. Time will tell. The doctor said he was starting me on mild doses so I don't run for the hills - wise man.
1 -
@claoh I'm so, so glad your first infusion went so well. I hope you are continuing to be side effect free through the week after!
One thing, well another thing, I didn't realize going into DIEP surgery was that the abdominal incision is NOT similar to C-section. It is literally from hip to hip. So, the first few weeks after surgery, DIEP patients have to stay in a hunched position all the time. At rest, in a recliner with pillows under the knees. (They call this the beach chair position.) When up, hunching over using a walker. They did warn me how patients report the back pain from these positions all the time can be severe. They were not joking!
Once the last drain comes out this afternoon (please, God, let this happen!!), I need to start wearing compression garments like spanx or high-waisted bike shorts PLUS the abdominal binder. Wearing the binder 24/7 has really been irritating my skin around my belly so they suggested wearing a camisole underneath so I have soft fabric between skin and binder. I worried that I couldn't put on a top that didn't open in front but my occupational therapist made me realize it's doable. So, yet another order to Amazon. I swear Amazon stops at my house almost everyday, lol!
Tonight, we will receive our last dinner from our Meal Train. We've been so grateful for all the people who participated. But soon, we, mostly my husband, will have to take on solely meal planning and cooking and hopefully cut down on all the take out we've been getting when not receiving a dinner from the Meal Train. He's juggling so much but I keep reminding myself, "this too shall pass".
Wishing us all a wonderful weekend. God bless!
0 -
Good morning,
My cancer support group was asking everyone, "what brings you joy, and happiness?" First time in my life I did not have a quick answer. Alone most of the days, my husband works outside in the garage or is on the computer. I have nothing to talk about since I have nothing going on. My grandchildren live far away and my friend is working, besides, I have fatigue and shortness of breath right now. I had my 7 th infusion of Taxol and will not complete 8 and 9. I am done, the chemo just took too much out of me for the last six months. Now just trying to get my strength back and breathing normally. Taking a shower is an event that leaves me short of breath and shaking. By next week I should feel much better and plan to drive 1 hr to have lunch with my son. He makes me laugh a lot! Sorry to be so down now, but that is where I am. All of you have it worse than I have, I am proud of you all for the fight you have been giving life!
0 -
Home again home again jiggity jog. How are you ladies today? Doesn't seem to be much business going on here on the blog. I just got back from the hospital. It seems to be my spot anymore, considering the fact that since the beginning of November I am now up to three hospitals stays. This last one was due to a pulmonary embolism, AKA blood clot up by my heart because of the swelling in my legs. Seems like the fun will never end on my side.
0 -
Following up: they wouldn’t take my last drain out Friday because it was still producing too much. I came home very demoralized. Since then, it’s producing basically nothing so it should come out at next post-op in a couple days. That will be 32 days after surgery. I went to my last post-op all prepared with NIH research about the risks of leaving drains in past 3 weeks being greater than removing them but they scared me into thinking I’d be one of the unlucky ones to develop a seroma so I let them leave one in. I’m so ready to be done with them and, sadly, whether I’d have to have drains again will factor into choosing whether to have revision surgery, if recommended, in the future.
@Sadiej I’m so glad to hear you are home and I hope that this will be a positive turning point health-wise for a good long time to come.
@marlakeeth Your words “I have nothing to talk about since I have nothing going on” really resonate with me. I feel like the world’s most boring person right now. I spend my days and nights reading fiction and mindlessly watching hours and hours of movies and TV shows. I eat too much for the lack of activity and I order stuff from Amazon. That’s my life right now. I am very grateful for my husband and family; I don’t mean to sound ungrateful. It’s just a slog through anxiety, depression, and boredom (on top of the physical aspects of recovery).
Now that I’m taking meds less often, starting to get around (the house) a little more, and soon to be drain-free, I’m going to try some more intellectual pursuits and exercise my brain.
What do you sweet ladies have going on this week? @claoh Do you have your next treatment this week? How are the side effects?
0 -
yes, my 2nd chemo is this Wednesday. Feeling better today and agree that life is pretty much within the house. Do need to try to get out and walk more. The mental emotions are a big part of the battlefield. I do have a lot more seepage from the tumor and I'm hoping that is because it is being attacked by the chemo. Our atmosphere has changed a lot in the last 3 months and do hope we each find that inspiration to lift our chins and carry on.
Love, what are you leaning towards for intellectual pursuits?
Marla, glad you will be able to see your son for lunch soon.
Sadie, what is happening on the home front as far as a move - still pursuing that?
0 -
Good afternoon ladies. I was so glad to go back through and reread the last posts. Y'all are such great warriors in this battle! Sorry about getting so short on my last post. It just seemed that every time I turned around I was getting slammed with something. And all the lymphedema hass to do with my breast cancer. So round and round. I haven't given up yet lol. It's interesting that now I have a team of Health providers at Cleveland as well as a team here that visits me at home. Claoh that was all on your suggestion (Hospice) and I am grateful to have it. As I said the hospice is only one part of the group and I am not in that section because that is for people that are looking at a terminal condition. Mine is in the palliative group section which takes care of all my meds and checks my health and gives me individual PT and OT.
Marla I'm sorry that you're feeling alone and I would love to come pester you but I'm afraid it's a bit of a ride for me to get to your house LOL. Still you're in my heart and prayers. I totally get what you're saying as far as the chemo being hard on the body and the shortness of breath and the tiredness, especially when it comes to taking a shower. That pretty much guarantees me about an hour long nap afterwards. This week I have an appointment with a geneticist. I'm really not sure what's going to happen there but I will let you guys know after I meet with her.
Lovesprimes I'm really proud of you and how far you've come! Your descriptions of what you're going through really help us as well as others who are reading this! I was also wondering if they have to put drains in for every time they do surgery for you. Do the drains hurt? This is all so new to me that I love getting your side to understand it better. Like I said I will go for just a mess up to me with no other surgery but this still helps me have a sense of knowing what's going to happen. Fortunately or unfortunately the surgery would not happen until I can prove 6 months without metastases. I have noticed that I'm starting to get my strength back. My last chemo was at the end of September and although it's taking me a while and I'm still not 100%. I feel myself getting better every day.
Claoh that is a good question to ask your surgeon about the seepage. Mine is dry and itchy but I didn't know if that was what you were dealing with before it actually erupted. Since my pet scan got moved my oncologist meeting will also have been moved to the Monday following the scan. At that point I should have a lot more information about where we're going with this. I can also ask them about the itchiness. It is bothersome at times! Also I'm waiting to hear how Wednesday goes for your chemo. That's one good thing about this blog is that we get a lot of information in this to help all of us at whatever point we are in our battle.
Okay ladies signing off now. Claoh we are just waiting for a buyer on our house so we can move South. May all of you be blessed and find happiness and peace as we continue to walk our paths.
Hugs
0 -
Good morning ladies,
I am now post-chemo day 12 and feeling much better each day. Gives me hope that I shall soon be myself again. However, the numbness continues in my fingers, feet, and toes. I have lost 6 fingers nails and will more than likely lose a few more. My great toenails look like they might come loose also. Not a great prospect what what can you do, nothing!! My shortness of breath has diminished quite a bit. It comes back depending on my activity. Just continuing to drink a lot of water and walking for exercise. I am glad to "hear" from everyone.
Sadiej, glad to hear about the house. Hopefully, you do not have a lot of stuff to pack.
Cloah, how are you feeling with your chemo? Did you have a port put in? what chemo are you getting?
Loves, glad to hear that your healing is coming along so nicely and you will soon be drain-free! When do you think you will be able to straighten up?
Have a peaceful day everyone!
0 -
Evening ladies!
Marla welcome to the post chemo world! Interesting you were talking about your nails. I lost the nails on my big toes twice when I had chemo last and they never did recover. In fact I have had four toenails completely taken off just recently (while I was getting ready for this go round of chemo) because they were so misshapen that I had to have them taken off due to the foot pain when I had shoes on. I really hope that doesn't happen to you. My toes still have not recovered yet, probably because of the chemo. I have a couple more that are starting to do it also. One day at a time ladies!
Glad to see that everybody is a little bit more uplifted tonight. Tomorrow I see my primary care doctor to find out exactly what the heck is going on with me although I have a feeling most of my answers are going to be with my oncologist. We shall see. Now when I get tired or sleepy I get a little nervous that it might be another blood clot. All of this that I am experiencing is directly related to my triple negative. They seem to be getting the worst of it but thankfully I have good doctors and good healthcare teams around to help me with it. I will let you know how it all went tomorrow. Thursday I have a meeting with my palliative care doctor in Cleveland and Friday I finally get my hand checked one last time from the orthopedic surgeon. So I'm getting there. Just a few bumps in the road LOL
Hugs
0
Discussion Boards
- All Discussion Boards
- 6 CSN Information
- 6 Welcome to CSN
- 121.3K Cancer specific
- 2.8K Anal Cancer
- 440 Bladder Cancer
- 306 Bone Cancers
- 1.6K Brain Cancer
- 28.4K Breast Cancer
- 391 Childhood Cancers
- 27.9K Colorectal Cancer
- 4.6K Esophageal Cancer
- 1.2K Gynecological Cancers (other than ovarian and uterine)
- 12.9K Head and Neck Cancer
- 6.3K Kidney Cancer
- 666 Leukemia
- 789 Liver Cancer
- 4.1K Lung Cancer
- 5.1K Lymphoma (Hodgkin and Non-Hodgkin)
- 235 Multiple Myeloma
- 7.1K Ovarian Cancer
- 53 Pancreatic Cancer
- 486 Peritoneal Cancer
- 5.3K Prostate Cancer
- 1.2K Rare and Other Cancers
- 532 Sarcoma
- 718 Skin Cancer
- 647 Stomach Cancer
- 190 Testicular Cancer
- 1.5K Thyroid Cancer
- 5.8K Uterine/Endometrial Cancer
- 6.3K Lifestyle Discussion Boards