Starting Chemo in April, May, or June 2022
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Hi Margecandoit and all,
I’m doing really well. I’ve gone to my office to work yesterday and today. Have avoided large meetings, but enjoyed seeing people in real life. My first days back since March 13, 2020. Most people transitioned to in office days 6 weeks ago, in my earliest chemo days. Final TC treatment is on 7/6. My hair loss is seemingly stable. I have enough I can “pass” for the old me with no head covering on the day I wash my hair. The following days I have a few wide silk headbands that are actually pretty cute. Really happy I did cold capping. This past cycle (and first), I had no bone pain, though I did have a fair amount in cycle 2. Hopefully cycle 4 will be more like cycles 1 and 2. Today my taste is pretty much normal and I’m glad that I’ll be able to enjoy some July 4 foods.
Margecandoit, if I had the ability to choose, I’d absolutely go for a lumpectomy and reduction. Will you need radiation? Statistics say that lumpectomy plus radiation is slightly more favorable to overall survival than mastectomy with or without radiation. I had a lumpectomy and my surgical side is probably a cup size smaller than my non surgical side. I may or may not have surgery to create symmetry once I see my post radiated results. In a bra and regular clothes I look fine, completely normal. My surgical breast looks great, the two just aren’t as matched as I’d like. Due to my blood clot and a plastic surgeon who wouldn’t do an oncoplastic reduction due to him not being happy with my tumor location for his typical surgery, I didn’t have that option. My BSO did use oncoplastic techniques, so I have no divots, and the scar is a scant half circle around the top of my nipple. If I look like this following radiation, I’ll likely call it done. If I shrink anymore, I’ll have to think on it
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Sarah...so great you got back to work and the cold capping has been beneficial!
I'm on for round 2 of AC on Monday. The first round was tough. Though they loaded me up with anti nausea med it wasn't enough. We did get things under control by Wednesday evening ( chemo was on the Monday) I had dexamethazone 12mg plus Akynseo on Chemo day plus prochlorazine As my rescue pill. I was taking that every 5 to 6 hours on the Tuesday but it wasn't doing the trick plus it's a really horrible feeling drug! I called the nurse on Wednesday am and she told me to take it every 4 hours. Still no good so I called the oncologist on call Wed night and he said if I had any of the Dex to take that. It saved my Canadian Bacon! Took it again Thursday morning and by then I was doing ok. No nausea meds needed by Thursday afternoon. So we are going to skip the prochlorozine and stick with the Dexamethazone Day 1 through 5. I would rather be Roided lol!! Definitely tired but can't sleep. The oncologist also said to add gravol when I needed and it would help with the insomnia. This week has progressed nicely with one hiccup...last night woke up with racking pulsating bone pain in my spine. Yikes!!! I had had no side effects from the daily Filgrastin injections so it was quite a shock. I took a couple of Tylenol and a Claritin and it settled. Today has been off and on throbbing but nothing like last night! Thanks for listening...oh also really hungry lol!!!!
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Moosegirl, I’ve had pulsating pain in my back and neck each time, and after all my research and talking to my MO, she and I think my pain is from low iron and perhaps exacerbated by slight dehydration. I’m not anemic per se, but she thinks that is causing what I feel. Yours may be actually bone, but typically the GCSF affects our hips and femurs. Regardless, I’m sorry for your pain and nausea. Glad you were able to get it under control. My (unneeded) rescue meds have been prochlorperazine (Compazine) and ondansetron (Zofran). TC is different from AC, and I’ve heard that nausea is more common with AC. Hopefully you will be able to keep it at bay with the dexamethazone.
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Sarahmaude thanks for the info. I will have to have radiation after my lumpectomy. I have large breast so that maybe why my BSO think I need a reduction also. I did have a lumpectomy 2 years ago for a Intraductal papilloma on the same side it’s only slightly smaller so maybe taking more out and radiation will make it even smaller where I look odd. I don’t know I guess I will find out. Mastectomy sounds hard both mentally and physically but worry about reoccurrence could be stressful.
Moosegirl I am having my 4 AC treatment tomorrow I been doing ok with nausea but they been giving me long term nausea med in my IV before treatment and them I take olanzapine for the first 4 nights and alternate Promethazine and ondansetron every 8 hours with dexamerhasome once a day. I know everybody’s different I hope you fine the combo that works for you. I been lucky with Claritin helping with bone pain. Sorry your having that.
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I completed my last TC treatment today! I’m so relieved to be able to move that “to do” into the done column. I chose not to ring the bell. Mostly because I still have weeks of radiation ahead, and didn’t feel like it was so much of an end as it is a checkpoint. I see the RO on Monday.
The treatment today was very smooth. The nurse was unfazed by my veins and said they were wonderful. She placed the IV successfully on the first try. She was really efficient and we ended up finishing almost an hour earlier than last time. Simple things like having the ice for my hands and feet ready early and paying close attention to the remaining med levels helped us get out. I’ll be changing cold caps until 9 pm or so. I’ll be done at 9:15. Hope to pack them up for return tomorrow. I’m glad I chose to cold cap, but also glad to send them away!
I did find out my calcium level was low on so I will be taking prescription calcium starting today. Not sure what caused that. A good question for the MO. Of course I start reading about hypocalcemia and see that symptoms can be numbness in hands and feet and muscle cramps. I have has some intermittent numbness in my heels and my calves have been on the verge of a charley horse a few times recently. I’ll update here if I find out anything else.
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Sarahmaude Yay!! For completing your chemo. Also glad it went smoothly. I completed AC and start taxol next week. It’s nice to check things off the list. I hope radiation goes well. Would like to here how that goes for you. Hope you are having a great day
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Sarahmaude: Hooray!! I'm so glad you are finished with chemo. Hope today is going well.
Margecandoit: If they haven't told you about icing your hands and feet during Taxol, ask them about it. My best advice is to remember to wear thick socks and invest in some of the white cotton gloves to wear under the surgical gloves. It gives you just enough of a thermal break to be able to keep your hands and feet in the ice longer with less discomfort. The expensive cooling socks and gloves require at least three sets of the gel packs to get you through the hour long infusion and they cost an arm and a leg. My MO wants me in the ice for 20 minutes before and 20 minutes after the infusion as well, so you have to have access to a freezer or a really great ice chest.
To everyone: I looked over at my quilt design wall and saw a "sign" that I pinned up back in 2020 when the first covid quarantine was a couple of month old. It seems very relevant to where my chemo brain today and thought I'd share the laugh with y'all.
"For those who have lost track, today is Blursday the fortyteenth of Maprilay."
Hope that made you smile!
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Hello, I have been lurking on these boards for a while but this is my first post.
I will be starting chemo next week (TCx4) and did not see a new thread for July+.
I had a lumpectomy 5-17-22 to remove a tumor in my right breast that was ER+/PR+, HER2-, ended up with an oncotype score of 24, which was kind of a grey area as far as decision-making goes. They told me distant recurrence about 12% without chemo 5% with chemo, so I decided to go for it rather than regret not doing it down the road. I will follow the chemo with radiation (20 treatments) and then anastrozole along with lupron injections.
I really appreciate all of you sharing your experiences, it really helps me feel prepared for whatever might happen. I'm most worried about neuropathy, and all the food issues (I love food!) but I already cut my hair into a pixie cut. Really just hoping for no complications/infections with the chemo.
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kathrynw1thasea thanks for the info. I haven’t been told anything about icing hands and feet.I was just told of possible allergic reaction on the first treatment.
Michpdx welcome to the group. I don’t know much about TC but I am sure other have pointer.
Hope all are doing well.
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Hi michpdx, I just finished my final TCx4 treatment this week. While it certainly isn’t fun, I tolerated the treatment well. My biggest issues were fatigue in cycles 2-4, changes in taste, a burned tongue feeling, and low WBC counts.
For neuropathy, my suggestion is to ask if they will provide icing during your Taxotere infusion for hands and feet. You can also use frozen peas or ice gloves. I ended up using the ice basins. So far, I’ve escaped neuropathy. At my facility they provide a wash basin they fill with 2 bags of ice. They cover the bags with disposable pillowcases, and you keep your feet/hands in between the bags during the Taxotere. I wore socks on my hands and feet for a barrier to the cold. It was very cold, but so far, no neuropathy and no lost or damaged nails. The thing with TC that I appreciate is that I’ve been pretty okay with food and taste issues about 14 days past each treatment. I’ve actually gained a few pounds. The steroids and Akynzeo have completely blocked nausea and vomiting for me throughout treatment. I have had to be mindful of constipation. Miralax has been the best help along with staying hydrated.
I also had good results in treatments 2-4 keeping ice chips in my mouth during Taxotere. The change in taste and burned tongue feeling was much better when I did this. It takes having a friend or family member feeding the ice chips if you are icing hands and feet.
I also had Nyvepria (like Neulasta) injections each cycle. I was surprised that I still had very low WBC counts each cycle at nadir, but the Nyvepria brought me back to good levels each time. If you get these injections you can and should take Claritin or Zyrtec starting the day before and continuing for the next 7 days to hold off bone pain created by inflammation in created by the action to stimulate WBC recovery.
I hope your treatment goes smoothly. It will pass faster than you think! I’ll keep coming here to check in even though my chemo treatments are done, I’m still recovering from last cycle, and want to make sure I can help others as much as possible.
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Hi All, Just found out about this post. I was diagnosed in feb 2022 at 46 yr. Left IDC & DCIS; 1/2 sentinel nodes; Grade 2; Right DCIS, 0/1 nodes; Grade 2; Surgery BMx 3/17/2022; Chemotherapy 4/15/2022 TC; Radiation July 2022 to whole left Breast & Lymph nodes.
I had seroma oozing out 2 months post surgery and I have been packing the wound daily since then. Onco suggests ALND. I feel the risk far outweigh the benefits and deciding NO to ALND. Risks being Lymphedema. I see several posts where nodes have been removed. Curios to know if the nodes were removed during surgery or if they were ALND (Auxillary Lymph Node Dissection) surgery.
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Hi whimsicalzaadugirilife888, the only node I had removed was the sentinel node during my lumpectomy. As far as your axial nodes, I would suspect your RO will provide an opinion on need for ALND. I expect you will get rads on the axial nodes. The reading I've done lately seems to concur with your thoughts that you shouldn't need a full dissection. Unless you had clinically positive nodes (per ultrasound, MRI, or mammography), I haven't seen recent recommendations for surgical node dissection for stage 2 patients. I'm not a doctor, though, so I would say discussion with your surgeon and RO would be reasonable
As far as your draining seroma, what does your surgeon say about that? 3.5 months seems like a long time to deal with that! Maybe another post in the surgery section or searching for info on what you should expect for that to heal would be worthwhile.
Edit: I just found this page from the 2022 NCCN Breast Cancer guide. The flowchart for what I am saw for your situation says “consider no further axillary surgery.” This is from page BINV-D:
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Thank you sarahmaude for pulling up the NCCN guidelines. This is very helpful. I am starting radiation next week. I browsed through the seroma board and found that a few are dealing with seroma for months. Chemo slows down the healing. Eventually, after a long time, it does get better is what i read.
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Hello! Have my second tc chemo coming up this week. My hair is almost gone. Any tips for scalp? It feels very sensitive, tingly and kinda painful sometimes. I’m super nervous. I was doing great until this week. I’m exhausted. Also thinking about asking my dr for help with anxiety the first few days of chemo. The steroids are not a fun experience. Super anxious, full of energy and exhausted all at the same time. Not even sure if there’s anything that can be done :
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hi nynyroc, when i lost most of my hair, the scalp was very sensitive. I applied moisturizer to the scalp. Initially it felt icky to moisturize scalp when i still had tiny bits of hair left. But it did provide some relief and have been still doing that. For the steroids, i took it early in the morning and early afternoons so it does not interfere with my sleep. Yet, there were many nights where the steroid kept me up. Hope others may have some other ideas.
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good tip! I’ll give it a try whimsicalzaadugirilife888
With your experience, did your symptoms stay same/amplified with each round? or did new things pop up? I only have one round under my belt and feel more prepared. I know anything can happen.
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nynyroc - most of the symptoms were similar from cycle to cycle, except for a couple of new surprise symptoms, that were temporary. As always BC is not a planned path. The fatigue and joint pains you experienced in 1st cycle, will be similar for other cycles. This will help you plan your weeks ahead.
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I had my first TC infusion on Thursday. I just took my first Zarxio injection out of the fridge, a little nervous of that. So far I haven't had any side effects, just drinking loads of water, rinsing my mouth with biotene after eating. Still can taste things. Waiting for the other shoe to drop.
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All of you have been such a fountain of knowledge, i just want to thank you for sharing in such a nurturing way! On 6/27 I finished my 4th & final round of Adriamycin & Cytoxin (AC). I will start 12 weekly infusions of PacLitaxel (taxol) & Paraplatin (Carboplatin) on 8/10. Of course I've read up on the side effects, but can you all give me some real-world advice on what to expect/look out for/avoid with this particular "cocktail" in the weeks ahead?
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the bee:
I am on AC(4) and Taxol (12). I just received T #9 of 12 a couple hours ago. With Taxol, you have to be on the alert for neuropathy in you hands and feet. I have been on cold therapy using buckets of ice for 20 minutes before, one hour during, and 20 minutes after the Taxol infusion. I were heavy cotton socks under plastic bags the cancer center uses as barf-bags and I wear white cotton gloves under the surgical gloves. This keeps hands and feet dry while providing a bit of a thermal break from the extreme cold. As long as you keep you skin “cold” you can take hands and feet out of the ice for breaks. Plus you don’t want frost bite. So far I have no sign of neuropathy.
There are very expensive socks and gloves for cold therapy with gel inserts, but you need more than one set of the inserts to get the time required. The inserts are expensive as well. Ice, sock and a pair of white cotton gloves are cheap. But the cold therapy socks and mittens (they aren’t actually “gloves”) give you a little better mobility. However, it’s easy to slide you feet into a pair of Crocs or sandals and pulling a thumb out of the goose is easy for iPad access.Something I have noticed is that my sensitivity to the cold can be affected by my stress level. Give yourself grace on the really hard days. Don’t give up on the cold therapy. I’ve heard many women regret giving up on the cold therapy. I am very grateful for my results and I’m glad I’ve been touching it out.
Good luck!
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How is everyone doing? I passed what would have been the three week interval for a chemo cycle, but since I’m done, I get to keep healing!
I ended up with a lot of fatigue that lasted longer than expected after my final treatment on July 6. My blood work on the 20th showed that a lot of my red blood count values were low. I kind of freaked out a little thinking I’d have to get transfusions or something, but as I saw the results on the weekend decided to give it the weekend to see if I felt better. I also added some more good dietary iron sources, both “heme” like shellfish and meat, along with non-heme such as spinach and fortified cereals. I did a lot of reading and determined that I probably wouldn’t be given iron boosting meds since we’re already treating my low Vitamin D.
I was told at my final chemo that I had low calcium. They were supposed to call in a prescription calcium supplement, but that didn’t happen. When I called the nurse on the next day they said to just add two Tums tablets per day to my existing 1650 mg I’m already taking. Of course, I go down my rabbit trail of reading about why my calcium is suddenly low, and I see that low Vitamin D is often a cause. I asked for them to test my levels, and they are indeed low. I’m now taking 8 weekly high doses of Vitamin D2 and will be retested in October.
The good news is that my energy is much improved. Still a long way from normal, but I am not having to nap during the day, and I’ve been able to shop and prepare some meals nightly this week in addition to working my telework desk job.
I started rads on Wednesday. So far so good there. First 3 of 21 sessions are complete. I have 16 whole breast treatments followed by 5 boosts to the tumor bed. I’m marking off the calendar they gave me with big Sharpie Xs.
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Hope everyone is doing well. I just had my second taxol treatment. The first two days are good but the third day I start having pain in my arms and leg but no tingling in my hands and feet so that’s good. Is anyone else having pain it kinda is a roaming pain also been getting like menstrual cramps. The first treatment it stopped around day 5. Wondering if this will continue for the next 10?
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I too get the "roaming" pain and menstrual-ish cramps. Mine is very mild, like twinges or zings, but it is very weird how it jumps around from one place to another. I just finished my 10th taxol and am really struggling mentally. My tumors are still palpable, and the larger one hurts since the NP poked at it. I'm worried that these 12 weeks have just been time for the cancer to spread, since the chemo doesn't seem to have worked. They did shrink some, but I won't achieve pCR as was hoped. I have my pre-op appointment with the surgeon Monday.
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maggiehopley-thanks for letting me know I am not alone and this is normal. I am sorry your struggling mentally with this. I also understand the wondering if this is doing anything. I have never feel the tumor so I can’t tell if it’s getting smaller. Can’t wait for 10 more treatments and can set up surgery to get it out. Hope your Pre-op appt. Goes well and they can get you in soon.
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Hi ladies!
margecandoit - I usually have lots of energy the first couple of days after Taxol chemo day because of the steroids. By the end of the second day I start to crash and on day 3 or 4 I get knee and calf pain. The pain comes and goes but stretching helps with the muscle pain. Working the knee joint sometimes helps relieve that pain. I’m icing my hands and feet during and 20 minutes before and after the infusions. I’ve been able to avoid neuropathy from the first 9 of 12 treatments.
Sarahmaude - so glad to hear you are feeling better with more iron. Vitamin D is the only supplement my MO lets me take, so I’m glad to hear it helps with other things. I’ll be starting radiation in September, so I’ll be looking forward to hearing from you. Did they create a special body form to get you in position or use preformed “pillows”? I’ve read and heard different things.
Taxol #9 was different from the previous infusions. I found myself really going to a sad place while waiting to be called into the infusion room. I could feel my heart rate increase and I started tearing up. I was able to get it under control, but it was very upsetting. I suppose it’s pretty common after being in treatment for so long. I’ll be sure to take the Ativan before the next 3. Has anyone else experienced this and how did you get through it?
Hope everyone is doing well
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Hi all - hope it's ok to join up with this thread? I'm starting my first weekly Taxol + Herceptin on August 8.
Looking for some reassurance about the steroids. I have a panic disorder and am concerned that the steroids will make it hard to manage. I do have Ativan for it. My oncologist has prescribed 5mg of Dex for the first infusion, and said that if there are no reactions to the Taxol we will omit steroids altogether if I want. Has anyone done weekly Taxol + Herceptin without steroids?
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Kathrynw1thasea- thanks for the response that’s a good idea to stretch. I walk 3 miles Monday - Friday and the pain comes on Saturday - Monday but infusion are on Thursday so that lines up. Unfortunately my place doesn’t do iceing so I am hoping neuropathy doesn’t happen but my MO always ask if I am having numbness or tingling in my fingers and toes. So far no numbness and tingling # 3 today.
JH40- I am sorry that your going through this. I unfortunately don’t have any info on the steroid I have taken them each time. Hope someone has the answer you need.
Hope everyone is doing well.
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jh40, I have chronic mild/moderate depression and adhd. No panic disorder, but when my depression wasn't treated I was prone to some anxiety. The steroids I got definitely ramped up my energy level on my first TC treatment. After that, I had slightly elevated heart rate, which could have also been from chemo. It never made me more anxious. Not having nausea and vomiting was a huge blessing. I think feeling ill would have been worse for me.
Kathrynwithasea, I am on my back for radiation with a very small foam wedge under the side where my breast makes skin on skin contact. Other that that, they have a special board for breast therapy. I've done some reading and some use the word mattress or couch for the rock hard places we lay for our baking. I'm being treated on a Halcyon machine, (a circle kind of like s CT scanner) and the board slides me in and out as if I were a gingerbread woman. I'm finished with 8/16 whole breast treatments. So far, as expected, I have no skin issues or irritation. Other than it being daily, it's very quick. Once I'm in position, the treatment is a little longer than one of the 1990s pop songs they play play during treatment. I'll finish radiation treatment on 8/24 with 5 boosts to the tumor bed. I did elect to receive 3 tattoos for alignment. I did not like the scratchy clear bandages over the sharpie marks I started with. The tattoos are smaller than many of my other spots I already have.
I also decided I wasn't happy putting double maxi dress length hospital gowns on daily. I'm not sick, and I think the gowns are triggering from my wire placement where I bled all over the gown I was wearing. So I went to Academy Sports and got an oversized $10 shirt, cut open the back and added ties to the collar. I have an over shirt and even just a sweater that I can wear over my homemade “gown." It seems like such a small thing to stress me out, but that small bit of control was very helpful to me. I can say that I am so over being a “patient “ after almost 6 months since diagnosis.
I'm not taking any supplements for iron, but looked at Cleveland Clinic's website and they had a helpful menu to boost iron through diet. General Mills has a Raisin Nut Bran cereal that tastes good and has good iron added. I'm also making sure I eat leafy greens, shellfish, eggs, chicken, and some red meats. I get bloodwork on Tuesday, so I'll be interested to see how my red counts have improved. I also see the oncologist, so will be interested to see if she has thoughts on how I can best monitor for any recurrence. It's kind of baffling to me that after all this treatment, we don't have better ways of measuring their effectiveness.
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jh40, I don’t normally have panic attacks but before my 9th Taxol treatment I had extreme anxiety and the urge to run away and skip my treatment. I had forgotten to bring my Ativan. I definitely remembered it for #10 and I’m sure glad that I did. It was a Murphy’s law kind of day, but I powered through 10mg of that wonder drug in my system. I actually look forward to the energy the steroids give my. I have a bit of trouble sleeping for a couple nights, but the energy is a blessing. I haven’t noticed the steroids making the anxiety related to being in treatment or my chronic depression any worse. If anything, those days seem better to me. Hope that gives you a little peace.
Sarahmaude, great to hear your experience! I totally understand the gown thing. My MO has the worst gowns and my surgeon has a great one. After reading your description, I’m thinking I may make one myself. Anticipating 6.5 weeks of hating a gown does not inspire joy! I had a question about the skin on skin thing. I thought it only mattered that we keep that area separated, moisturized and dry between treatments. Does it also have to be separated during the radiation application? I’m visualizing the wedge lifting the torso up on the radiated side just enough to defy the effects of gravity and aging that make us fail the pencil under the boob test.
I’m definitely ready to not be a chemotherapy patient anymore. I thought I’d want to keep my port for a while after chemo for any scans or blood tests, but I’m looking forward to getting it out and moving past the anxiety I’ve had over malfunctions. I don’t regret getting a port because the thought of 16 treatments and blood draws from the very uncooperative veins of my right arm filled me with terror. I ended up with 3 blown veins in the surgery to insert the first port and one that bled all over the floor during the replacement port surgery. Not that I’m looking forward to radiation, but at least the vein access will be over for a while. On the plus side, because I’m participating in a research study, a very excellent phlebotomist has shown me where I have a very large and stable, although deep vein on the outer part of my elbow. It’s now my “try here first” vein for the future.
The things we learn through cancer!
Hope everyone has a great weekend
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kathrynw1thasea, my wedge is basically a pencil, but on the side, since when we lay on our backs with arms over our head, gravity sends our breasts off the sides of our chest. The “medical foam” wedge is about the size of a large dog biscuit.
Being skin to skin contact free during treatment can reduce moist desquamation. I was hoping for prone treatments, but they don’t offer those here. The biggest advantage of prone treatments was in moist desquamation effects. I asked about that and also about wearing a special bra. I ended up not needing the bra, but I’m glad they did place the wedge for me.My other self invented trick you can easily adopt is to cut a small rectangle of cotton batting (mine is about 4x6) and roll it up. I can place it under my breast in my bra to somewhat replace the lift from an underwire, and it allows my skin to stay dry. It’s “free” for quilters, easily replaceable and hand washable. Not to mention light and soft. Much nicer than the washcloth the RO suggested.
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