New to the Board

Mark_Rollins

Hello all

I am new to the board. I'm helping my wife though stage 2 breast cancer treatment. They've given her the first chemo treatment 4 days ago and quite frankly it's shocking. The first day after she was fine but then it hit and she's been in severe pain in bed ever since. It's hard watching her suffer like this. She's never done well with pain so it's particularly difficult. I'm overwhelmed. She doesn't want to get up, bathe, drink or eat. She's also tested positive for COVID. I'm worried about what this will do to us. The doctors on the team aren't available nights and weekends so it's been a rough ride since Friday. Life has gone from happy to devastating in a very short period. Funny how fast it can all turn - one day you are functioning and ok with relative normalcy and then your life is thrown into turmoil. I am wondering if she should be in the hospital for something like this it seems like she should be on some kind of pain control and an IV.

Kristen0630

Mark,

please call your oncologist, someone is always on call. As my oncologist told me, there’s no reason for anyone going through cancer treatment to be suffering. Be persistent until you get the right meds. It can be different for everyone. Please let us know how it goes.

Mark_Rollins

Hi Kristen,

The offices and hospital have been short staffed due to COVID but we did finally get a callback from the oncologist and she is on top of it now. thanks much.

Kristen0630

I’m so glad you got through. Please tell your wife that I’m thinking of her. It’s tough, but she will get through it. Tell her she can feel free to reach out if I can help or if she just wants to chat with someone who has been there.

Mark_Rollins

Thanks again... I surely will and appreciate your outreach.

smallbutmighty

I am so glad you are getting help. I am recently diagnosed and had a similar experience with pain shortly after my mastectomy surgery. It is so hard on the caregivers/spouses and my husband was feeling just like you. It is especially hard right now with short staffed hospitals. As was previously mentioned, you need to be persistent, even if you face some pushback from your doctors. Everyone is different with how they react to pain, and some of us fall outside the norm. Your wife is part of a sisterhood now, one that nobody wants to join, but what an amazing support it can be. Please continue to reach out if and when you need to

Mark_Rollins

https://csn.cancer.org/discussion/comment/1693062#Comment_1693062

Thanks so much! It continues to be a rough road as I imagine it will be through the whole treatment duration. The oncologist says the reactions should become less severe with future chemo treatments as they are going to cut back on the injection that causes the body pain, but the body pain is only a small part of the problematic after-fx.

She is at least up and around a lot more now, a big improvement over the first week, but then again, it's been 2.5 weeks since the first chemo, so perhaps the length of time is the factor. She feels terrible pretty much all the time. I dread the next one coming up next week. She has to get everything done through an IV since she's testing positive for COVID they can't insert the Port.

My wife seems unable to drink enough water or eat enough water-based foods to stay hydrated enough to overcome the dehydration effects. [dizziness, etc] We're doing IV hydration at hospital every other day but am unable to get her to drink water. She just refuses to do it, I can't understand it, I've tried Gatorade, flavored waters, ginger ale, etc. If it were me I'd be drinking buckets to stay hydrated but there appears to be some kind of mental block and nothing I do or say works.

Mainly she feels like total crap and feels awful all of the time. Is this normal? [No nausea, no vomiting, no diahrrea at this stage - 2.5 weeks after first treatment]. Just run down, fatigued, and feeling awful.

4 more months of this? Dear lord I hope not.

smallbutmighty

It may get easier/better as far as the symptoms go, but it is probably still going to feel like an eternity sometimes, getting through this, both for you and your wife. My mom also went through this a few years back, and she had an easier time than I recovering from the surgery, but had a tough time with treatment. She had 8 rounds of chemo, and it did get easier as it went along. Really important to stay hydrated, but it is hard to drink when you feel like crap, and with covid she is going to be even more fatigued. Make sure your oncologist is aware of all of her symptoms, and don't be afraid to ask if there is something else they can do to help with her symptoms. My husband had to really push on my behalf with regard to the problems I was having after surgery, and it did help when they switched what they were prescribing for pain. Turns out I was having an allergic reaction to the pain meds, and that would not have been discovered had he not been insistent that what he saw I was experiencing was alarming to him, and needed to be addressed. Also continue to reach out to people, even if it is just to have a place to vent or feel like you are not alone.

Mark_Rollins

https://csn.cancer.org/discussion/comment/1693076#Comment_1693076

thanks very much!

gibby13

Mark,

When I started chemo, I had terrible pain from incredible muscle spasms. My oncologist had never had a patient react this way. He ordered a course of steroids for me. They made such a difference in the way I felt that he ordered them to be taken after each chemo treatment. No matter how bad I felt, I would go for walks with my husband. Some days, I might make half a block, good days 4-5 miles. In the long run, the exercise really helped and continues to be my survival with the medication side effects that I have from the aromatase inhibitors I have to be on for 5-10 years. your support to your wife is crucial also. My husband was so supportive and continues to be. This crisis has brought us closer. BTW, I am 61 and am now one year out from my BC diagnosis, s/p lumpectomy, bilateral mastectomy, chemo and radiation and other complications. Stay strong. Keep you wife strong! Pray and you both will get through this. Every day is a gift.

Mark_Rollins

Hi GIbby,

Thank you for this. What stage was your cancer when originally discovered?

Mark_Rollins

https://csn.cancer.org/discussion/comment/1692393#Comment_1692393

Mark_Rollins

Thanks Kristen!

Mark_Rollins

Thanks Kristen!

Mark_Rollins

A Progress report:

We are 4 days out from the second chemo treatment. Hydration IV treatments are every 2, then every three days consecutively. Hydration seems to provide some relief but overall not much.

The chemo currently consists of:

famotidine in NS (PEPCID) normal saline (BOLUS) ondansetron (ZOFRAN) Neulasta (pegfilgrastim)

Nancy is having continued problems staying hydrated. She cannot really drink much water, juice, Gatorade of any kind nor eat adequate enough food [including Jello] to maintain hydration or nutrition beause of continued stomach pain. Weight loss continues to be significant. The team seems aware of it but they aren't saying much.

Side effects are fatigue and stomach pain, and a lack of taste with very dry tongue. The stomach pain does not appear to be gas related or bloating, it's more of a constant pain from which some relief comes from taking Pepto-Bismol, but returns within a few hours.

She'll eat just enough, maybe some crackers or a few bites of soup and just throws the rest out. Tried everything to get her to drink and eat, now I just try to be supportive and offer but it's not really falling on open ears.

Has anyone else experienced these kinds of symptoms or are symptoms just generally all over the map like this, can anything be requested or done?

I am going to try getting Ensure or Boost and see if that will lick the nutrition problem but she's just miserable feeling rotten and fatigued and it's just continued suffering day after day week after week.

Any answers or advice would be most appreciated.

PS: Should I post a new thread or just continue to use this one?

Mark_Rollins

https://csn.cancer.org/discussion/comment/1693335#Comment_1693335

Gibby,

A walk isn't even in the ballpark in her condition. She's pretty much confined to bed she's so fatigued. I'll address the steroid treatment maybe that will do the trick?

gibby13

Mark, I was diagnosed with Stage 3A breast cancer. My chemo consisted of Taxotere and Cytoxan. They premedicated me with Dexamethasone, Aloxi, and Cinvanti. The next day after chemo, I went back for the generic version of Neulasta (Ziextenzo). I had to FORCE myself to drink lots of water and got Premier protein drinks. I did have some terrible problems with constipation (as a cancer survivor friend warned me about). Plus I have a very slow digestive process normally. I can't say I had stomach pain, though. The Neulasta caused bad bone pain. The steroids really helped with that. They had said claritin would help but it did nothing for me. I had many friends who went through this before and they all said to fight the urge to stay in bed, as it will make you feel worse. But definitely, rest when she needs to. I could not get a port either. I had gotten COVID prior to surgery. I was well over it as my surgery was postponed because of it. But I ended up with blood clots and pulmonary emboli after surgery. They put in a PICC line instead of a port which I think was a blessing because ports can cause other problems. I had to have PICC line dressing changes done every week. COVID could be knocking her down as far as energy. Definitely keep communication with the oncologist about what you witness. Ask what else could be done. I will say that she needs to fight. It isn't easy. All the treatments affect every aspect of life. You can help her fight, but she needs to also. She needs to WANT to fight. Ask for a social worker to speak with both of you during chemo to express your concerns if you don't feel like they are addressing Nancy's needs. Please have her reach out if she wants to also. I will pray for both of you.

Mark_Rollins

Thanks for this feedback, Gibby. It turns out the stomach pain was related to her GERD and she had stopped taking those meds when she started chemo for some reason. Per advice from the NP last night she took 40mg of Omeprazole [Prilosac] and that took the pain right away. She is eating fine now, at least better than she was.

The cancer team stated they will be making some more adjustments to the treatment to reflect some of these symptoms. Nancy has also taken your advice and tried to stay moving around more, rather than stay in bed. She will likely get the PORT rather than the PICC for various reasons she prefers, or just keep getting poked for the treatments. She doesn't have any COVID symptoms at all, the positive reading will hopefully be a thing of the past once she's tested again for the PORT insertion.

Will keep you posted here.

thnx

Mark

gibby13

Now that you mention it, my GERD acted up with chemo so much so that my oncologist doubled my dose of Omeprazole from 40mg to 80mg. Once all my treatments were completed, I went back to my regular dose. I am so glad your wife is getting out of bed more. Sometimes it is an emotional thing more than a physical thing. Just gotta keep fighting. I am still fighting battles with myself. It has been almost a year and yesterday was the first time I went without a headcover and showed my "chemo hair" which is much different from my own. It took participating in a support group of other survivors (through our local fitness center) and seeing their strength. I used their strength to motivate me. I will keep praying for her.

Mark_Rollins

https://csn.cancer.org/discussion/comment/1693504#Comment_1693504

Thanks so much Gibby. She's doing much better now and they are going to put her on weekly treatments with less chemo - instead of the big blast every three weeks - and she's going to go with regular IV, no port or picc. She's been up and around and doing things for a few days now and energy back. We just shaved her head to make it official. The lump has shrunk in size considerably so the Oncologist seems pleased. I think you are right when you say some of this is psychological. Once you get depressed it's an uphill battle to do anything so if you keep active and talk to people and interact it helps a lot. thank you for your prayers and advice.