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Starting Chemo in April, May, or June 2022

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  • kathrynw1thasea
    kathrynw1thasea Member Posts: 89
    edited August 2022
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    Sarahmaude, the batting idea is so genius! I’ll definitely be using that. Thanks for the tip!

    Taxol #10 is proving to be quite a bit more tiring than the previous 9. I have slept a lot more this weekend than the previous cycles. I’m so very grateful that I haven’t had a lot of nausea and no signs of neuropathy. I’ve been very committed to the icing and I do believe it has worked. If anyone is struggling with that, I can tell you it’s worth the discomfort.

    Hope everyone had a good weekend

  • jh40
    jh40 Member Posts: 140
    edited August 2022
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    sarahmaude & kathrynw1thasea - thank you both for your input. My first treatment has been delayed to 8/15 due to an eye infection that cropped up last weekend. My oncologist is giving it this week to heal up before we begin.

    I'm hoping I can manage the panic/nausea with the Ativan, just 5 mg of Dex, and Zofran/Aloxi pre-meds. I've been given Zofran and Compazine pills as well, of course.

  • kathrynw1thasea
    kathrynw1thasea Member Posts: 89
    edited August 2022
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    jh40, Zofran was my best friend for nausea. Animal crackers helped a lot too. Saltine crackers were good when I was getting a little dehydrated, but the best thing was pedialyte powders for my water. Most of us experienced changes in taste. I got hooked on Chik-fil-A sauce and Sarahmaude liked Olive Garden salad dressing. I have to admit stealing that idea when the chick-fil-a sauce lost its appeal. It’s great on pasta and chicken and eggs…

    Eating has been a real challenge for me. I just don’t have an appetite. Protein drinks are my go-to most days when I can’t face real food, but blueberries, bananas and Greek yogurt are always a welcome option for me.

    Hope your eye gets better fast and the 15th goes well. I had a 2 week delay in the middle of 12 Taxols, so I understand how frustrating a delay can be. Hang in theree

  • jh40
    jh40 Member Posts: 140
    edited August 2022
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    kathrynw1thasea - thank you for sharing. My eye is finally looking normal and I'm back in contact lenses again today, yay!

    My oncologist seems to be really confident that I won't have nausea with weekly Taxol. He says it's a lower emetic chemo. I hope he's right! I haven't been told when to take the Zofran/Compazine pills. I've read a lot about getting ahead of nausea, and I'd like to know what that really means as far as timing/intervals?

    Did you take Zofran just as needed or did you follow a schedule with it?

    I've heard a lot about the taste bud changes. Not looking forward to that but I feel like as long as I can get protein shakes down I'll be ok. I don't have a huge appetite to begin with; I'm a grazer by nature and don't really eat big meals. I'm hoping to maintain my weight and not go up or down too much.

  • margecandoit
    margecandoit Member Posts: 146
    edited August 2022
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    I just got my 4th taxol treatment today. I haven’t had any problems with nausea but they do give me something in my IV for it. I don’t need to add anything like I did when I was on AC. My taste buds have change a little bit. Drinking my water has been the the hardest on me. I can no longer drink out of medal containers but plastic ok and bought glass bottle around the house seems to work.

    Hope everyone has a great day!

  • kathrynw1thasea
    kathrynw1thasea Member Posts: 89
    edited August 2022
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    jh40, I took the Zofran on a schedule with the AC, but on Taxol there was no schedule for steroids or nausea meds. Your MO is correct about Taxol being lower emetic. I’ve only had a few days when I got that uncomfortable chemo tummy feeling and I took a Zofran to ward it off. I also have Ativan which helps with anxiety, nausea and sleep. I don’t take either of them regularly on the Taxol. Only as needed, which has been more often in the last few weeks. I just had #11 today. One more and I’m done with chemotherapy! Whoop!

  • jh40
    jh40 Member Posts: 140
    edited August 2022
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    kathryn- thanks for chiming in about the Zofran. And congrats on #11! You'll be done with #12 in no time! Hoping I won’t get too nauseous. I’m getting nervous about Monday rolling around.


  • kathrynw1thasea
    kathrynw1thasea Member Posts: 89
    edited August 2022
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    jh40, good luck for Monday! You can do this! The first one is always the scary one.

  • jh40
    jh40 Member Posts: 140
    edited August 2022
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    kathryn - thank you! I was lucky so far and had no reaction to Taxol. Benedryl was making me feel like a fruit loop...wild. I got Aloxi in my IV and the 5mg of Dex but no Zofran, just have the pills in case. The icing was brutal. I iced for 20 minutes before and during the 1.5 hour infusion and for 20 after. Came home and passed out for about an hour and a half. Body feels heavy and tired but it’s not bad. I’ve had 2 1/2 liters of water and some coconut water so far. Hope it helps me

  • thebee
    thebee Member Posts: 3
    edited August 2022
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    Hi jh40,

    I couldn't make out exactly when you will start with the taxol. But Here is my history with Taxol to date, if it helps. Got my first taxol infusion on Aug. 10th. I had a reaction ( face flush, loopy feeling, deep ache in my lower back) to it minutes into the infusion and the nurses were on me like ducks on a june bug! They paused the taxol, my nurse immediately texted my MO and they prepared and gave extra steriods and oxygen and the reaction was gone quite quickly. After waiting about 40 minutes they started the taxol again (they call it re-challenging) and all went well.

    For my next infusion (today) they had me to take at home, 3 Dexamethasone 12 hours before infusion and then 3 more dexamethaxone 3 hours before infusion. Infusion went without a hitch, hallelujah! I experienced no nausea with the Aug. 10th infusion or the one today and appetite for my husband's somewhat unusual and piquant cooking is back. Got caught out trying to quit taking the once daily miralax last week and had some seriously unpleasant constipation, though! I know, TMI! I hope you are doing well with it! BTW, I am icing hands and feet.

  • jh40
    jh40 Member Posts: 140
    edited August 2022
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    thebee - ducks on a junebug! I love that. That's a scary situation though! I'm glad you came out ok from it! I have faith in the medical teams; they know what they're doing. But it's still terrifying to be in that position!

    My first infusion was Monday 8/15. The day after was tough mentally for me with the steroids. I had a lot of anxiousness and paranoia, but I did manage it with a small dose of Ativan. I had pretty constant stomach/intestinal irritation but it comes and goes in waves, along with a sickly feeling similar to how I felt after Covid shots. Not nausea per say, but just a gross overall feeling. Head fog. Metal mouth taste. Crappy appetite.

    Yesterday was maybe slightly worse. Stomach/intestinal issues. My mental state got pretty rough last night when I discovered my heart flutters in my chest when I lay on my left side, and it makes me cough. I called my oncologist about it this morning. It's got me in my head thinking I won't be able to do Herceptin (I'm on a biosimilar Trazimera) if this is what's happening after just one infusion. I went into this with above average LVEF function at 70%, so I'm really scared about losing that or something worse cropping up.

    In good news my bowels seem to be normalizing - so I'll join you in the TMI share on that!

  • margecandoit
    margecandoit Member Posts: 146
    edited August 2022
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    I had my 5th taxol today. They have me take 5 dexamethaxone 12 hours before and 6 hours before. Weird how differences between DRs or maybe it’s the milligrams. I also had a rash my first treatment and they had to stop and restart but nothing since then. I also will have a hard time sleeping tonight. Hope guy have a good night.

  • ajbclan
    ajbclan Member Posts: 396
    edited August 2022
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    Hi Everyone-

    I popped onto the BC boards as it's been a while, and last night I was melancholy for an "unknown" reason. I couldn't really figure it out and it hit me, 6 years ago yesterday, I had my 1st chemo infusion. I like to come on here periodically as there are still a handful of us checking in on each other from 6 years ago, but I also want to encourage all of you that there is a light at the end of this tunnel! I remember reading people being 1 year, 5 years out and it seemed so far away 6 years ago....but here I am. I have "no evidence of disease" mostly in part to this crap you're putting into your body! I had my chemo treatment before my BMX, so when they opened me up- they didn't see anything left of the 4 masses. It's a rollercoaster ride, that I don't think we ever get off.....one day at a time and keep supporting each other as you're all doing here. All my best to you! Kelly

  • margecandoit
    margecandoit Member Posts: 146
    edited August 2022
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    Ajbclan- thanks for the encouragement. I just received my 6 taxol infusions. Half way point yay!!! I am also doing chemo before surgery and it’s starting to get to me. So good to here yours was gone cause I am at the point that I want it out of me. Scared that it still spreading. Knowing that’s not logical just the fear of this.

    Hope everything is going well.

  • lef
    lef Member Posts: 32
    edited August 2022
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    Hi, Lori. (I'm also Lori.).

    I'm wondering how the rest of your TC regimen went. I am probably going to be starting the same next month. (Mine was er+,pr- her2-. While my tumor was only 1.6, my oncotype was 28 so the MO is strongly recommending chemo (and then radiation and then medication).

  • sarahmaude
    sarahmaude Member Posts: 338
    edited August 2022
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    I’m now almost 8 weeks past my final TC treatment. I’ve finished my 21 radiation treatments 4 days ago, and have about 10 days ‘till I start back on my anastrozole hormone therapy.

    It has taken me a lot longer to regain energy than I expected. I didn’t realize that the Neulasta injections didn’t keep my WBC count high indefinitely, and was surprised that I still had low WBC at 5 weeks post chemo. I’m also somewhat anemic, though below what needs any treatment for now. The MO explained that it takes a while for our bone marrow to recover, and that my blood counts aren’t unusual for the distance I am from chemo.

    Radiation was also a little different from my expectations. I had no skin changes until the final 9 treatments. I ended up with a large area of skin peeling and painful irritation underneath my breast in the inframammary fold. Also, mildly painful irritation in my axial fold (near where I had my lymph node removed). She prescribed Silver Sulfadine and lidocaine gel that I mixed with Aquafor, and 5 days later the pain is much better and my skin is looking better. I’m fatigued, and have had hot flashes, which I hadn’t realized can be triggered by radiation treatment.

    The other nice surprise I had was a terrible UTI. I have a long history of them, and before BC diagnosis was getting them about 4 times a year. I suspect that this one was with me for several weeks before my symptoms hit. We need to remember that our suppressed immune system keeps us from showing normal symptoms. I felt so much better once I started antibiotics that I have a hunch that my asymptomatic UTI was a big reason for my fatigue. The day before I had symptoms, my blood pressure was abnormally low, and my pulse was high. I had shortness of breath. I’m grateful for the pain that finally told me to get checked. I need to always remember to ask for a urinalysis if I’m fatigued.

    I’ve been feeling a lot better over the last few days now. Was able to prepare a couple of nice Instant Pot meals (lemon asparagus risotto and caprese chicken one night and buffalo chicken wraps another) along with peach cobbler using fruit from a local orchard. I’ve been able to enjoy sewing my quilt block of the month, and can actually do a full grocery shopping run without crashing afterwards. I think that once the weather cools just a bit more I’ll be able to resume walking.

    For follow up, I am doing Signatera. I was unsurprised, but disappointed that I’ll be paying for it myself since my insurance declined the pre approval request. I think they just need more evidence that there’s a benefit to early detection of circulating cells that match my tumor genes. If there is one big complaint I have it’s that we don’t really look beyond the breast in early BC treatment. How do we know the treatment we have worked? Waiting for obvious symptoms of recurrence frankly just sucks.

    In lighter news, I’ve got an appointment to trim my remaining hair. Cold capping was successful for me, though I did lose a lot of my normally thick hair. I don’t need to do anything to look reasonably normal in public other than make sure I’m within 2 days of washing my hair. I’m thinking the anastrozole I was taking prior to chemo set me back somewhat. I’m now seeing some hair growth on my legs. I even had to annihilate a few chin hairs. Why did they have to be among the first to pop up?

    Anyhow, I agree with ajbclan, there is light at the end of the tunnel, and even a couple of months after chemo, the light is poking through.

  • jh40
    jh40 Member Posts: 140
    edited August 2022
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    sarahmaude and ajbclan thank goodness for posts like yours. I’m sitting here in my 3rd round of weekly Taxol and my counts have dropped to the point of very likely needing a Neulasta shot before I can get my next round.

    I’ve been struggling a lot mentally with this. I went in thinking I’d have an experience similar to so many others in that it would be really tolerable with some annoyances. And people always tell me oh you’re so young and healthy, but I don’t know if that matters really. It’s been tougher on me than I expected at this point in the game and I’m disappointed my body isn’t as robust as I’d hoped and as others assumed.

    So I suppose the only thing to do is keep pushing and deal with things as they come, and hopefully reach that light at the end of the tunnel. Thank you both for offering some much needed encouragement

  • sarahmaude
    sarahmaude Member Posts: 338
    edited August 2022
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    I think that people who say they get through chemotherapy with only minor annoyances are either:

    1. Not easily annoyed
    2. Doing different chemo than TC or AC+T
    3. Putting on a brave face for social media
    4. Trying to convince themselves it’s not as bad as it really is

    I will say that at times I’ve been guilty of numbers 3 and 4. Admitting I spent the weekend on the couch hardly moving is really hard. Admitting that my productivity at work is really impacted could threaten my career. Even though at 57, I’m not necessarily young, I am/was a very energetic and positive person who passed for much younger than my years. I think we are conditioned to put on our makeup, best clothes, style our hair or cover our heads with jaunty caps and scarves and somehow manage to present ourselves as feeling better than we do. My MO said about 3 times how good I looked. She didn’t seem to really hear just how crappy I felt. I’m sure it’s all relative. Compared to some of the others I see in her waiting room who are either in more advanced treatment stages or who have lived harder lives (smokers, too much sun, alcohol) I may “look healthy.”

    Authenticity is a term we use at work and in leadership. I believe in it. But I also must have some primal fear of seeming outwardly unhealthy. It’s what keeps predators at bay, right? And we are repeatedly told that our positivity will conquer this cancer monster. After 6 months in this game, I’ve decided that it’s more important to acknowledge what we are feeling and go with it. I do think we have to find our thin slices of joy and look for the pinpricks of light to find our way out of the tunnel. But I also think pretending we aren’t in a tunnel keeps us from moving all the way through it. And pretending here can make others think that they are the abnormal ones. Chemotherapy is supposed to make us feel bad. Steroids and drugs like Akynzio and Neulasta blunt the symptoms and make the experience better than it used to be, but it’s still “poison.”

    I also think that the fact that most of us were feeling fine prior to diagnosis and that everything bad we feel is a side effect of treatment makes early stage cancer treatment especially hard. It’s not the tumor that made us feel like crap. It’s the biopsy. Then for me, the extremely painful DVT in my arm that kept me from getting the surgery I wanted. This followed by surgery, then chemo and for many of us radiation. If we are HR positive, we then have both the opportunity for survival, but also the long term side effects from endocrine therapy for at least 5 years. All this is laid on top of so much loss of our sense of self. I’m not going into that here. You all know what I mean.

    If there is anything good, I think it’s that we aren’t alone. I wouldn’t wish cancer on anyone, yet having all of you here so I know I’m not insane for feeling the way I do, both physically and emotionally, is a huge comfort.

    Just because we finish treatment doesn’t mean we’ve exited the tunnel. And even when the tunnel is behind us, I think remembering how bad the worst days were is important for our ability to empathize with those who are entering the tunnel.

    I’m reading a book now that talks about the importance of empathy and purpose in leadership. I think those human elements are equally important here. The purpose of treatment is kicking stupid cancer out of ourselves and keeping it out. But I also think that we can add another purpose of being able to provide the kind of empathy that only a fellow tunnel traveler can give. I still need all of you. I hope we can keep up our conversations as we move together. First through, and then away from the tunnel.

  • maggiehopley
    maggiehopley Member Posts: 112
    edited August 2022
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    Just got the results of my post-chemo MRI. I had very little response at all (taxol + HP). One tumor went from 1.5 cm to 1.1 cm and the other went from 2.2 cm to 1.1 cm. I wish I had been allowed to have surgery first, as I think my tumors have now had 3 months to shed cells into my body. I am triple positive, so I wasn't expecting pCR but I thought I would get better than this :(

  • jh40
    jh40 Member Posts: 140
    edited September 2022
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    maggiehopley - I'm thinking about you this morning. I'm hoping that some other triple positive ladies who've had similar situations come onto the thread to offer you support. <3

  • jh40
    jh40 Member Posts: 140
    edited September 2022
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    sarahmaude - thank you once again for your wonderful post.

    I've seen people on here really struggle and others who have seemed to sail through with hardly any trouble. I think you're right that some of it is putting on the brave face for public view, but I realize it's coming from a place of sympathy for newbies like me who are terrified and looking for comfort from those more experienced.

    For myself, I thought I'd get by the same as most on this treatment plan. My oncologist has been insistent that weekly Taxol/Herceptin is a well-tolerated regime and that I will handle it fine and bounce back quickly. My body reacting so poorly so soon makes me feel wimpish and weak, especially since I've seen the women who are on far tougher regimes boss up to it and handle it like champions. I've also felt like I should have had the guts to take the tougher treatment plan initially offered by my 2nd opinion oncologist. She retracted that recommendation in the end and agreed that weekly Taxol/Herceptin would be enough, but I can't help wondering if it was because she was trying to win me over to go with her as my oncologist.

    I'm only 3 treatments in and my blood counts dropped like a stone after just the 2nd. I expected it, but thought it'd be much later on. Doesn't seem like a good thing to happen so early. I worry that it will prolong this whole thing and that I'll be dealing with Neulasta and Procrit regularly, and the side effects of those. And how will I fare once I'm out of this tunnel? I don't have high hopes for the speedy recovery my oncologist postulated.

    In good news, I'm completely off of steroids as of treatment 3, and my GI issues are improving immensely. Still have reflux and some irritation/inflammation, but the cramping and near inability to eat anything solid is resolving. I also no longer need a heating pad on my abdomen 24/7 for the first 4 days after infusion. So I'm hoping I'll be able to get better nutrition going and help my blood counts.

    As always, grateful for this site to connect with others sailing the choppy cancer seas.

  • margecandoit
    margecandoit Member Posts: 146
    edited September 2022
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    Sarahmaude thanks you your words they alway seem to hit at the right time.

    Maggiehopley I am sorry what your going through. I am worried about his same thing also. Doing chemo first and it not doing anything to my tumor and itwill be in there for 5 months when I am done. I hope they will get yours out of you soon.

    JH40 I am sorry your having a hard time with your treatment. Hopefully it will get better with the improvement that are happening.

    I feel like I am the one who is not doing so bad with it. My dr. Is your blood work looks good but on the flip side of that I am just alway wonder if it's doing anything or is it working. I do have some pain and fatigue but that's it. I also don't have a good understanding on my diagnosis. So I always wonder if right decisions are being made. The mental aspect of this is really hard and takes a big toll on me.

    I hope everyone's having a good day!!

  • lori615
    lori615 Member Posts: 3
    edited September 2022
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    Hi lef,

    I took my last TC regimen on Aug 24th. Each one got a little better, with the 1st one being pretty rough. I had just about every symptom you can think of. They brought me in 12 days later and put me on an IV with fluid and steroids. I felt much better after that. They cut my chemo meds back for the 2nd round, as well. It got better after that. I took a Neulasta shot the day after each treatment. It does get better. I was fortunate to have my tumor removed prior to chemo. I start my 30x radiation the end of the this month. Good luck to you and all.

  • margecandoit
    margecandoit Member Posts: 146
    edited October 2022
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    Finished my last chemotherapy today. Yay!!! 6 weeks till surgery. A Little nervous about the long wait but that was the soonest the Dr. Could get me in. Thanks for all you guys support.

  • jh40
    jh40 Member Posts: 140
    edited October 2022
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    margecandoit - good for you! Congratulations! Can’twait to be where you are!

  • margecandoit
    margecandoit Member Posts: 146
    edited October 2022
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    JH40- Thanks it’s nice to be done with this part. Still some time to go but I think I am half way there. How many more do you have to go? Are you feeling better. I notice towards the last month that some of my issue went away and was just a little bit more tried.

  • jh40
    jh40 Member Posts: 140
    edited October 2022
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    margecandoit - I have 6 more weekly rounds of Taxol/Herceptin to go. This week would have been my 7th but the hurricane hit the area of Florida where my infusion center gets the drugs. So I was delayed another week.

    I had a delay after my 3rd round due to low white counts, and I felt great that week. But this week break has been mostly like a regular week of chemo. I've noticed a back ache when I bend over and the tops of my thighs feel kinda odd. The fatigue is heavier. I'm finding it harder to muscle through the days and I'm not doing anything particularly strenuous. The metal/dry mouth is also persistent. I hear that clears after a month or so.

    Radiation wasn't recommended for me after my mastectomy, so I'll just have the Herceptin every 3 weeks after chemo for 9 months after.

    Hoping to get through this and most of all that it works!

  • sarahmaude
    sarahmaude Member Posts: 338
    edited October 2022
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    Love seeing so many of us coming to the end of treatment! I'm now at 3 months post chemo, and feeling so much better! It took a couple of weeks after I finished radiation to feel enough better to start my return to a new normal. I got my COVID and Flu shots a few weeks ago and started going back to the office instead of telework. I traveled for work last week and was able to do everything needed plus do some social activities in the evening. I was pretty tired over the weekend, but have bounced back.

    I'm back on Arimidex and as before, I have very mild side effects. I'm supposed to be getting Signatera testing results, but need to figure out where that is. As expected, it was denied by insurance, but I expect that there is a way I can get an affordable result directly through the company.

    I have my six month post surgical follow up this week. I'm very happy with how my lumpectomy has healed. I think the surgeon will be impressed. I go back to the MO at the end of this month for my Prolia shot. Not sure when they'll schedule me next. I'm seeing a nurse practitioner that I've never seen before. That is one "complaint" that I have is that we alternate visits between the dr. and NP. So far I've not been super impressed with how the NPs have answered any questions I have, but I can always send questions through the patient portal if I don't get them answered at the visit.

    I've also had my hair trimmed twice. I've got a lot coming in. I never needed to wear a wig or really cover my head, so I'll call my cold capping experience a success. I'm going a little crazy dealing with my gray temples and roots. Three more months 'til I can get color on it. I did pick up some L'oreal hair touch up spray. It's very temporary, but I'm happy with the results. It makes my hair feel a little stiff, but it's not a powder, so it's not going to clog my hair follicles. If anyone tries it, choose a color that's lighter than your normal shade. It seems to go on darker than expected, and the more you apply the darker it appears.

    It's strange and also great to have weeks between any doctor appointments. I haven't been coming here as much either, but I'll check in every now and then.

  • jh40
    jh40 Member Posts: 140
    edited October 2022
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    sarahmaude - so grateful for your posts, and so glad you’re doing well It’s nice to know the light at the end of the tunnel does arrive!

  • margecandoit
    margecandoit Member Posts: 146
    edited October 2022
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    Sarahmaude- so glad to hear your doing well and getting back to your new normal. You been really helpful.

    JH40- sorry you had to miss some treatment. That’s a bummer if your like me and counting them down. I had to miss one because they move office during my treatments. Your getting there!!