Jul 30, 2022 12:54PM sarahmaude wrote:

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.

Jul 31, 2022 02:42PM maggiehopley wrote:

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.

Aug 2, 2022 11:50PM kathrynw1thasea wrote:

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

Aug 4, 2022 09:53AM margecandoit wrote:

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.

Aug 6, 2022 04:51AM kathrynw1thasea wrote:

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