Chemo starting June 2018
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Had my HP treatment today, only 3 more to go YAY! Buuuttt....being in the clinic put me back in "patient" mindset today so I'm a little, IDK, weary? I think we're all in a place where we just want to get on with life....and that's a good thing, I guess. I feel bad saying that, cuz many of us still have some challenges/issues (neuropathy in my case) but we have proven ourselves to be STRONG CONQUERERS so there's that.
When I weighed today, I too found that I've put on a few pounds. I commented that maybe I need to lay off the fast food, but "I'll eat what the hell I want, I earned it." Still remember vividly being unable to eat much of anything and if I could eat, it tasted awful. So for now, yeah....I'll eat the Big Mac, and the cookies. In May/June I'll be wrapping up the HP, probably get my port out, in short be pretty much done except for my new friend Letrolzole. Then I'll get serious about eating better. But for now I'm feeling kinda entitled.
I feel bad, though, because just as I made the comment above, a lady came around the corner, she was bald but didn't yet have that "look" of being in the hell that is mid-to-late chemo. She shot me a dirty look and I felt bad. Then I thought that she'll unfortunately understand soon enough. I hope she'll remember me then, and realize that she too will get there. Am I heartless for not apologizing?
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Kat22 Where's your neuropathy? My fingertips are numb + hands generally feel 'asleep' so my MO says to take a bunch of supplements. I think they're helping. The numbness is still there, but reduced since I started taking these two weeks ago. L-glutamine, Alpha Lipoic Acid, B-complex, and Vitamin D. The idea is that chemo destroys the uptake and absorption of these particular amino acids, etc., and we need more of them.
I had neuropathy like this (numbness, not pain) in the soles of my feet during chemo, and it has not returned. The hand neuropathy started 2 months after chemo was finished. My MO says "yup, that happens sometimes." I think he said it with a caring tone--he really is compassionate and nice--but this was one of those things on the "Oh, yes, we forgot to tell you about all the horrible things that you'll endure as we try to save your life!" list.
During chemo I had serious reactions: hives twice, and then a lung inflammation (pneumonitis) which took about 3 months to resolve. For each of these, I had to be on high doses of steroids for many weeks. I had lost about 20# over the previous year, but then I gained 10 pounds back while on steroids. 5 more pounds packed themselves on since I've been on AI's for these past 4 months. Ugh.
For me, it's exactly what Kat22 mentions---it feels like it's time to indulge a bit, after going through the trauma we all endured. I try to control my gluttony most of the time, and then cut loose a bit on the weekends.... this plan is holding my weight, but I'm not losing any. Empty calories just jump into my body; I don't know how they do it. For instance, last night, a martini drank itself. I looked down, and it was gone.
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Kat22:
I was obsessed with watching food videos during chemo because I couldn't really eat much of anything. I totally get where you are coming from.
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Hiking lady: hahaha on the martini drinking itself! I've got neuropathy in my fingertips. No pain, but no feeling either. MO finally said today that Bcomplex may help, I'll consider your suggestions also. I handle a LOT of money on my job, so it creates a challenge.
WC3: I was just the opposite. I didn't want to see or hear anything about food, it made me sad. Now I deprive myself of nothing. I'm still about 12 pounds lighter than I was before this journey started. Just gotta be mindful to maintain it.
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RE: Neuropathy after chemo and the supplements I'm taking
Kat22 --sorry we both have this issue to deal with. I don't have to handle lots of money (although that sounds kind of cool!), but I notice that sewing something, like hemming a pair of pants, or picking up a small object is a whole new challenge, for sure....
Well, I'm not able to be my own double-blind study on any supplement I'm taking. So, who knows. I feel that I've had the fingertip numbness and hands-asleep feeling lessen a bit in the two weeks I've been back on these supplements. These particular supplements (mostly amino acids) are known to be helpful for transmitting neural impulses, is basically what my MO's triage/chemo nurse explained.
These are the same supplements that a naturopath recommended for me when I started chemo, and also they were recommended by my MO when I had some foot neuropathy during chemo, so alternative + conventional medicine agree on this. Daily: B-Complex, Vitamin D (3,000), L-Glutamine (1 scoop = 500 mg and I have 1-3 scoops a day, spread on yogurt or cereal w/ milk or some cold food or mixed in juice or water---it is less potent when heated) and Alpha Lipoic Acid--1 capsule daily.
Since they're amino acids, I'm also making sure to eat a pretty solid amount of protein daily. This way of eating also helps me with weight control. Amino acids are what protein is made of, so I figure, I shouldn't skimp on protein.
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Yesterday I walked through the entrance to the cancer care center of the hospital I go to for the first time since December to see my RO and do planning for radiation. I tell ya, it was weird for me to sit in the waiting area again. Seeing people in all different stages of treatment. I started to get anxious all over again and had to pull out some mints for me to suck on while waiting for the nurse to bring me to an exam room. My stomach churned a bit. I hate that I can’t get over that feeling. And I’ll probably have that feeling throughout the next 6 weeks or so as I go through radiation.
I’ve gained 7 pounds that I just don’t need. Like some of you have said, I feel a bit entitled to eat what I want since I went months not being able to eat and enjoy what I was eating. I hope once spring has finally sprung, I’ll get outdoors and take walks around the neighborhood and work in the garden.
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RosieRed: I was actually losing weight during rads. Not really trying, just a change in eating habits. My RO told me about 3/4 of the way through to stop losing weight! Apparently the rads dosage is based on weight, and I was on the verge of receiving too much. So enjoy what you want the next few weeks, says I. lol
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Hope everyone is having a better June than last year :)Whew that was a rough time!
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Lulabella - Boy, you aren’t kidding! Glad that is behind us. Hope you are doing well.
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I do have a little "gift" or two remaining from chemo. Finger neuropathy which is very slowly receding, but I still have numbness in my fingers from time to time. My fingernails are still fragile, but definitely improving with time.
I wish for us to go forward, healing inside and out from all the trauma we have been through. Sending everyone warm wishes.
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HikingLady - yeah, I have some neuropathy as well in the tip of my index finger and the balls of my left foot.
I just ended radiation on May 15. Skin is healing well, thank goodness. Last thing I have to do is my exchange surgery.
I do hope that everyone is doing well and able to enjoy the summer.
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Good to hear you are all moving forward. My feet are about 80% and my fingertips about 90% and hoping for some more improvement. Healed from rads. Starting to settle into the Letrozole a bit after 4 months. Have 4 more Herceptin to go and was hoping that it would just be the Zometa every 6 months, but now may be facing more surgeries. No family history, but I qualified for genetic testing due to my bilateral BCs and surprise 2 category 1 pathogenic changes. In total shock. But not jumping into anything until I'm done my current treatment schedule and so I'm hoping to enjoy my summer this year.
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Well I just had surgery and they gave me dexamethasone and Zofran and I have had acid reflux and am now going through steroid withdrawl so I'm back to feeling like I did during chemotherapy, bright red, with a tender esophagus, and a hint bad taste in my mouth. Not to mention, my mother who stayed with me during my infusions is here. Total de ja vu.
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WC3 - I’m sorry that you feel that way and hope that you feel better very soon. I haven’t seen my MO for over 6 months and I have an appointment to see him on 7/9. I already having anxiety over seeing him even though it’s just a follow-up visit. It brings back memories of chemo for me.
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RosieRed:
Thank you for the well wishes. I hope all goes well at your follow up.
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Throughout my chemo treatments, one thing I kept doing was look at vacation websites on my iPad because as soon as I could get over all of my treatments, I was gonna get the heck out of town. Even though I still have my exchange surgery to get through, I finally got out of Illinois and went on a cruise with my family. And it finally made me feel like I’m a little bit myself again. Here is a picture from our cruise...
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Hello ladies! Decided to pop in today because today marks one year since my last round of chemo. In so many ways, that whole ordeal feels like just yesterday and in others, a lifetime ago.
I also wanted to ask a question regarding scans after treatment. I've had several follow-ups with my MO at this point but she feels very strongly that I don't need to be doing scans. I've spoken to other survivors who get scanned each time they see their MO. Can someone shed a light on this, whether you are getting regular scans or not and the reasons behind it? My MO said she won't order them unless there are concerning symptoms. However, as I'm sure you all understand, doing "nothing" (I'm on Tamoxifen, so it's not nothing) after such a long period of treatments feels a bit terrifying. Thank you in advance!
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I have tumor markers every few months. I had a "6 month" MRI to check suspicious areas a previous MRI saw but it will not be a regular thing.
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RE: Scans My Mo said several interesting things. First, that the scans often cause false positives which erode well-being and Quality Of Life due to to anxiety. Next, that the stage at which something is seen on a scan (mets to lung, liver, bone and brain are the basic things that are the worst worry), is the same time when the symptoms will show up, so we're not ahead of that game by doing more imaging. He added that protocols for longterm monitoring are based on NCAA data and evidence-based medicine--continuing to do scans through the future just for my peace of mind isn't correlated with better treatment outcomes or survivor rates, and in fact, might basically freak me out without having a positive impact on my QOL or survivorship.
He further explained that patients who are diagnosed with metastases, and who are being monitored during active treatment for those mets, do have scans, to inform treatment decisions along the way. And, he also told me that if I get a symptom that is worrying (headaches, jaundice, spine/bone pain, bad coughing---any of these that are worse or not improved after two weeks), that indeed, I'd be a candidate for imaging immediately.
His advice, when I asked, "Well, then how do I live with all this terror?" was: We've done everything aggressively and in a timely fashion to treat your cancer. You go forward doing what you can to support yourself (exercise, weight control, limit alcohol to 3 drinks or fewer per week, take your AI), and that's our best, evidence-supported plan going forward.
My survivorship updates:
- I lost 7 pounds, so now I have my BMI down out of 'obese' into overweight, and wish to lose 15-20 more pounds, but it's very challenging!
- I do exercise 1 hour each day (deep water exercise with resistance cuffs, biking or hiking)
- I eat very healthy food--lots of veggies, whole grains, protein, no junk food, cook real food from scratch
- I limit my simple carbs to almost none (all of this was how I lived before cancer, so ha ha I got cancer twice anyway, just lucky!)
- I take my AI and dislike the resultant creakiness, but find that exercise and hydration help me manage SE's
- I like about 3-4 alcoholic drinks per week, but I'm now trying to make it be more like 2 or 3.
Life after Chemo
I had finger/hand neuropathy which started at the end of chemo and lasted 10 months, and recently resolved, yay! I am going on with my life, living with the worry about the future, but also grateful that I have a good chance of moving forward. My MO originally told me that my treatment plan had a 90% chance of curing my cancer. I used Cold Capping, and my hair thinned, but I didn't look like a chemo patient. 6 months after chemo ended, my hair started looking definitely curly. I now have pretty darn curly hair. I'm not minding my chemo curls; they're kind of fun. I think I need to hydrate more now than before chemo. Possibly it's my AI, but I find that if I drink a lot of water every day, I feel better. I get tired every afternoon. My stamina seems lower than before chemo. Possibly my body is still repairing chemo damage, or possibly the AI makes me have less energy, or possibly I just am a year older (62 now)!
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hello,guys! I have been away quite a long time. I went to work after not working for 10 months and so felt like I didn't have time or strength to do anything. Lol
To give you an update about me, I finished my chemo in oct 2018, finished radiation without any skin breakdown in December 2018, went back to work February 2019, finished my herceptin in June 2019, and had my exchange surgery July 23, 2019.
During middle of my radiation tho I felt what I thought was a lump. I told my radiation oncologist and he said it was the expander. I told my plastic surgeon and he agreed. Then I saw my bs (my mistake I didn't say anything to her) and she did a physical exam and didn't say anything..said all good.
When I just got my exchange surgery recently, the lump was still there. I asked my plastic surgeon and he wanted me to see my bs. I saw my radiation oncologist and he wanted me to see my bs. So I was worried sick for 2 weeks waiting to see my bs. I saw her yesterday and she said she did not feel anything when she examined me in November 2018. She did a physical exam and said she doesn't feel a lump. She did an ultrasound of where I felt the lump/hardness, and she said it was a fat necrosis. She did not see anything in concern to do further testing. I never thought I would be so happy to hear the"fat" word. 😝
Oh yeah, I am doing well on tamoxifen. I know there are people that are having very difficult time on it but there are also lot of people that have no problems with it but don't post. So hopefully, this helps someone that is nervous about tamoxifen.
My hair is growing back real slow. Especially top sides but I could live with that.
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Thanks @HikingLady, such a thorough response! You explained it very well. I feel much less anxious about not getting scanned.
I, too, am doing great on Tamoxifen. I do have some gnarly hot flashes, but most times I forget I’m even on it!!!
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Checking in for the first time in a while....today is the one year anniversary of my last chemo. I had my first follow up mammogram the other day and "everything looks good "! So it's been a good week.
Still have neuropathy in my fingers, and not happy about weight gain, but otherwise all is well. Going to a lymphedema therapist soon to see what can be done about mild swelling. Wishing all of you the best!
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Kat - Good to hear from you and glad that you are doing well.
I have to see my PS for a pre-op appointment today for my exchange surgery which is set for Oct 1. Nervous to have to go back to the operating room, but hopefully it'll be the last procedure I'll need for a long time.
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