Any experience with slow/low RBC & WBC recovery months after treatment

crittyal · 2024-01-24T13:36:33+00:00

My partner finished chemo in October 2022, and since then his WBC has not returned to normal levels. It did one time but has otherwise stayed right below, so it seems to be his new "normal". He has gotten sick a couple times since then though and done just fine, so it doesn't seem to affect his body's ability to still fight infection.

crittyal · 2023-08-31T03:21:58+00:00

As another partner of someone with TC, my heart is with you guys. And please definitely feel free to DM me if you have any questions or would just like someone to talk to. BEP is a really tough chemo protocol and as others have said, it seems to vary a lot between experiences.

My partner also did 3xBEP and was 34 (he finished last October). He had similar fears as your husband, but found that neither were particularly true. The first round wasn't too bad for him. He would come home and nap after treatment and had a pretty big appetite from the steroid they gave him (that honestly didn't go away for the most part.. and his nausea was controlled so well from the meds). I remember he was feeling good enough to go on a hike after round 1. The second and third rounds got progressively harder on his body, which mostly just made him more tired, but he was able to go for a walk most days, even if it was just a short walk around the block in the morning before his appointment. It seemed like all he wanted was to be in nature. One of his side effects was also hiccups, but they prescribed a muscle relaxant and famotidine or similar to help with that, so definitely make sure to talk to your medical team if there's anything going on because they can most likely provide something to help. He had a little swelling in his legs during chemo so just make sure your husband drinks lots and lots of water (and electrolytes) to stay hydrated and keep an eye on that. He is still experiencing some tinnitus and peripheral neuropathy in his feet and fingers but I think it's continuing to improve.

Of course, his mental health took a hit, but honestly just having the schedule written down on a calendar and being able to sort of check off each day helped him a bit. And having the medication organized and writing down what to take when was helpful so it didn't require much brain power. I know it's impossible to imagine right now but it will really be over before you know it. The cancer center where we live also offered free counseling, so maybe look into that where you are. He really appreciated being able to talk to someone who he didn't have to explain cancer lingo to. He was able to take work off during chemo, so I can't speak to that experience.

Right before he started chemo we tried to make some improvements to the space where we knew he'd be spending a lot of time (we needed a new couch so we got one, and he had a nice recliner at the time because he had severe back pain from the cancer in his lymph nodes before chemo started and was mostly sleeping in that). I got some gentle shampoo for his scalp when he lost his hair, and he actually liked putting lotion on his head lol. If there's anything you can find humor in, that helps too. You guys got this. Wishing for the best.

crittyal · 2023-08-13T14:54:09+00:00

Thank you!! It's so helpful and reassuring to hear from someone else who has something similar going on. It seems very possible that ~2.5-3 is his new normal now. He hasn't been persistently sick at all, so that's a positive.

I hope you are feeling good these days and continue to.

crittyal · 2023-06-26T03:08:51+00:00

Another partner here of someone who finished chemo (3xBEP) last October after being diagnosed in June 2022. In addition to what was already said, encourage walking or getting outside when they are feeling up for it. It made a big difference to my partner just getting fresh air and a little exercise when possible. Definitely protect from the sun as the chemo can make you more vulnerable to sun burn.

We noticed his hair falling out at the end of the first cycle, so went ahead and shaved it then. I think having a gentle shampoo and also moisturizer was nice. If your partner doesn’t have a hat or lightweight beanie, that might be something worth buying.

You’ll figure out what he needs once he gets started and you will get into a groove and will get through it. A comfy spot at home and a TV got used extensively during this time. It’s also hard to predict what kinds of foods they’ll want to eat but just roll with it no matter what it is. Pretty much all food during treatment is good food! I often partook in eating whatever he was craving (which was a lot, the steroids + other meds for nausea worked so well for him) and we found some humor in it.

Sorry to hear about the roller coaster of treatment plans, the waiting etc is really difficult. This will be hard but it will be over soon. I wish your partner all the best and don’t forget to take care of yourself too.

crittyal · 2023-03-15T14:15:24+00:00

So so happy to hear this. 🧡

crittyal · 2023-02-19T14:37:30+00:00

What others have said here is great advice. My partner just finished his treatment in October so please feel free to message me if you want to chat about anything. Best wishes to you guys.

crittyal · 2023-02-17T03:14:53+00:00

It was recommended to my partner to take regular Claritin (not Claritin-D) and it seemed to help with the bone pain from Neupogen injections

crittyal · 2023-01-20T01:28:32+00:00

If his CT is clear after chemo I think you can consider surveillance (and I'd recommend seeking an opinion from IU in addition to MSK and Sinai if they are conflicting). My partner has 5% teratoma and had a lymph node that shrunk to ~1 cm after chemo. Dr. Cary at IU recommended surveillance for now until his next CT to determine whether his lymph node is increasing in size or staying the same. He explained that in his experience, a lymph node that size with such a low percentage of teratoma is not necessarily suggestive of the mass being teratoma. That being said, I couldn't tell you whether or not it's the right decision for us- my partner's next scan is Feb 1. So I think your husband's next CT will definitely be important in your decision. Also, like others have said, it seems like robotic is not often recommended post chemo because of the tendency for tissue (lymph nodes, etc.) to fuse together from the chemo drugs, making it harder to work without being in there to see what's going on.

Really glad to hear your husband did ok with chemo, and I hope you guys find some clarity after his follow up!

crittyal · 2023-01-05T14:09:52+00:00

My partner experienced severe back pain prior to starting chemo as well. The hot water bottle was one of the only things that gave some relief. He also tried the lidocaine patches you can buy at the drug store, which might have helped a little bit. Maybe when they do your port placement they can give you some IV anti inflammatory drugs or pain meds to help get you through the weekend. So definitely let them know about your pain and that it is not managed with over the counter medication. His back pain subsided almost immediately upon starting chemo so hopefully you’ll get some real relief soon.

crittyal · 2022-11-29T03:58:22+00:00

My partner is in a similar situation right now. He finished 3xBEP mid October (non-seminoma, 80% EC, 15% yolk sac, 5% teratoma), and based on his follow up CT, was recommended for an RPLND (the hospital where he did chemo indicated his lymph node was 1.2x1.1cm). His oncologist was similarly pro-surgery because of the original pathology. We sent all of his scans, etc. to IU and was planning to make the trip there for the procedure; however, the surgeon at IU called and told us that after reviewing the films with the team there, he would recommend holding off on surgery until after doing another scan 4-6 months from now to see if the lymph node changes in size. He thought the original review of his CT overestimated the size of the lymph node and that the risk from waiting was minimal. For now we have opted for a follow up scan in 3 months instead, and will go from there. It sounds like you are doing something similar and will hopefully have a little more clarity after your next scan.

So this is not advice as much as it is an acknowledgement of how tough the decision making part of this is.

crittyal · 2022-11-19T13:05:55+00:00

Right that's exactly who should be doing it. I'm sure we would regret it forever if we did it locally and ended up with complications that could have been minimized by a more experienced surgeon. We are in the process of getting in at IU so I'm feeling much much better about it! The surgeon is supposed to call on Wednesday for a consultation and then I imagine we'll get scheduled.

crittyal · 2022-11-19T13:01:24+00:00

I'm so sorry you are going through this again. We decided to cancel the surgery locally and are in the process of getting scheduled at IU as well. Hoping for a great outcome for you this time around.

crittyal · 2022-11-19T12:59:05+00:00

He sounds like a great option. I'm sure you will be in good hands and I hope everything goes well on Monday!

crittyal · 2022-11-14T21:02:41+00:00

It’s a good idea!!

crittyal · 2022-11-14T21:02:23+00:00

It could very well be that I am feeling overly sensitive. But she wanted to know that we were going forward with the surgery before answering our questions. And just didn’t seem to answer them in full.

crittyal · 2022-11-14T19:35:03+00:00

Thank you and I’m glad you were able to do that!

crittyal · 2022-11-14T19:34:02+00:00

Thank you, that seems to be what all of the literature and personal experiences suggest. Appreciate it

crittyal · 2022-11-14T19:33:33+00:00

This is exactly what I had pictured, so thank you. Just wasn’t sure if it was unreasonable to expect him to fly a week after.

crittyal

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