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MarieE

Another newbie ... Still a bit in shock

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Well, today is the day for the first chemo treatment. Neither of us are enthused but it is what it is ... My husband still has a chronic cough and we are 6 weeks out from surgery. It's discouraging when the treatment only seems to make things worse, but we're both trying to focus on the light at the end of the tunnel. 

I got a copy of the full reports from the genetic testing and there are a few thing that look encouraging for down the road if it comes to that.

We were able to visit our new grandson over the weekend so that certainly helped with the anxiety and anticipation of what we're facing. We both just want all of this behind us.

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Hello Marie, My wife and I are new to this too. Her 1st round of chemo was Monday and was not bad just long. I am new here so I don't know much but I can tell you to be prepared to be there awhile. Take snacks and different forms of entertainment to help pass the time. Our chairs were not to comfortable to if yours aren't get up and move around a bit. I hope your 1st treatment is as smooth as ours has been. The members here a great they have helped us get though this with their good advice and tips,visit often and read others journeys as they can often give you comfort.

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Thank you so much, Robert. It's hard not knowing what to expect. I think we will be there for about 5 hours overall today, and the treatment next week should only be about an hour.  We've actually never even been to the cancer center where today's treatment is but I know we have an option to go to the local hospital that we went to for the consult for future treatments if desired. It is a bit further away but has better facilities (e.g., private treatment areas, TVs, cafeteria, etc.).  My husband keeps telling me I don't have to stay with him, but I know I'd want him with me if I were in his shoes.

And yes, the members here have been a godsend ... so grateful for the support. 

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4 hours ago, PaulaC said:

Good luck today and I’m praying for a smooth treatment with little or no side effects. 
Take Care

Thank you! So far so good, but just magnesium, potassium, steroid and anti-nausea drugs at this point. Two chemo drugs coming soon ... 

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Marie,

Be careful visiting during chemotherapy, especially when children are present.  Chemo kills white and red blood cells along with cancer cells so one's immune system is compromised. Consequently, a minor cold could turn into pneumonia.

Stay the course.

Tom

 

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1 minute ago, Tom Galli said:

Marie,

Be careful visiting during chemotherapy, especially when children are present.  Chemo kills white and red blood cells along with cancer cells so one's immune system is compromised. Consequently, a minor cold could turn into pneumonia.

Stay the course.

Tom

 

Understand. I was surprised how many visitors were present (some people had 2 or 3) and how open the whole environment is. 

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Well, day one is done, and thankful for that. It was definitely stressful, not really knowing what to expect. We got there at 11 and didn't finish until 6 PM. I'm hoping we can join friends for Thanksgiving tomorrow but leaving everything flexible so we can play it by ear.

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Right now I'm starting to have some serious second thoughts and wondering if the treatment is worse than the disease. It's all so disheartening to watch. He did pretty well yesterday but has been very sick and unable to eat today. I got him to eat some chicken soup for lunch and he had half of a Boost drink for dinner.

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Thank you, Robert. I hope so. I know it is difficult for me to watch but it is so much worse for him. He's the kind of person who never slows down and for him to spend most of the day in bed I know it's bad.

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That’s my goal. I keep giving him more water but he’s now running a low grade fever. Getting concerned. 

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9 hours ago, Robert Macaulay said:

MarieE

If the water and couple tylenol for couple hours do not help, and temp starts up to 100F OR 38C time to see a doc.

Just took it again and it’s 99.9. 🙁

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Talked to the on call doctor and he said not to worry until it's at least 101. He prescribed Zofran and another drug to try for the nausea, and my husband just took one of the Zofran pills so fingers are crossed that it helps. The doctor said that the other drug is a bit more sedating so hopefully that will help with sleeping overnight. I took his temperature again when I got home from the pharmacy and it's 98.8 so that's good.

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Hi again. I keep feeling like I should move to other areas of the forum but I still feel so new to all of this.

My husband has barely eaten for 3 days and we're both feeling a bit defeated. Seems to us both that the "cure" is not worth it. He continues to run a fever right around 100 degrees. We'll be calling the doctor in the morning to discuss options since this is just not working. What's the point if the treatment makes your life not worth living? It's not like we all don't have an expiration date. (Sorry, just not feeling like putting up with the mainstream medical nonsense and group statistics anymore.)

He was completely symptom free until treatment began. Granted, he would have had symptoms sooner or later, but at what point do we cry 'uncle' on the treatment? In my view, we could be losing the best days we have left together. And we are doing it to ourselves. ☹️

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Hi Marie,

I would be concerned about an ongoing fever of around 100, especially if he if feeling ill along with it. Neutropenia - low neutrophils, a kind of white blood cell-- is a serious risk with most kinds of chemo. It impairs the ability to fight off infections, and  person can  get really sick from the bacteria that are normally on our own skin or in our digestive tract. An infection of this kind can get overwhelming really fast. If your husband hasn't had a CBC (complete blood count)  since the fever started, I would consider insisting that the doctor order one immediately with STAT (immediate) results. When I was having chemo, I had neutropenia twice and came through OK with strong antibiotics.

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Thanks, Bridget. We've called the office 3 times today to leave messages for a return call and it's approaching the end of the day and no one has bothered to follow up. Very disappointing.

On the positive side, his temp is down to 99 but he still has a horrible cough;  he did manage to eat a bit of solid food for lunch.  I think it's pretty clear we need to cancel the second round that is scheduled for Wednesday, and when we look at the overall cost vs. limited/questionable benefit, I'm not sure we'll be following up with any more treatment of this sort.

In my husband's words, this is the sickest he has ever been in his entire life!

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Thank you, Kristin. No return calls at all even though I left detailed messages about what was going on. He's asked me to call tomorrow morning to cancel future treatments.

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Marie, try calling the HELPLine to see what other resources are available in your area.  Maybe a switch to someone more patient oriented would make you both feel better?  The HELPLine is free and staffed by oncologist social workers that can help on a variety of topics.  https://lungevity.org/for-patients-caregivers/support-services/lung-cancer-helpline

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Thanks for the link. We are at the ER now waiting for chest X-ray and blood work. Cough is much worse today. 

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Hi Marie, good you went to the ER!  I hope your husband will consider looking for another doctor rather than giving up on treatment. I don't think the kind of failure to respond that you've experienced is characteristic of oncologists. Let us know how things are going.

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Thanks Bridget. I spoke with the oncologist last evening and she was very apologetic and said that the office procedures obviously needed to change since she had not received the messages. I suspect that a lot of my husband‘s symptoms were exacerbated by the respiratory virus, but the fact that he was so sick for so many days has pretty much turned him off of the idea of chemo. Here’s our plan for the time being: The first thing is to get him well. He was never really able to fully recover from the surgery and now he’s fighting this nasty virus so we are going to take some time and enjoy the holidays and then regroup afterward. He has a CT scan scheduled for the latter part of January and then an appointment with the surgeon and his pulmonologist. The oncologist will also check back in with us at that time. We’ll figure out where to go from there.

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