Post Treatment Questions

RAKGA

Hi everyone,

My husband completed 7 weeks of Cisplatin and radiation on April 5th. As expected the first several weeks after were the worst but he has been steadily improving since. His first ENT appt went well and there was no visable signs of remaining issues and his PET scan is scheduled for the 24th.

There are two items that I would love your experiences with, please:

1. His white blood cell counts have improved dramatically and are consistently in the normal range now. However, his red blood cell counts are still low and are not rebounding quickly. His oncologist doesn't seem overly concerned and just said that it will take time. How long did it take you or your loved ones to begin to see improvement there?
2. The main item that he is worried about is that he is still having quite a bit of throat pain when eating. Thankfully he has been able to move away from his PEG feedings to fully eating and drinking by mouth again but after 8-10 bites of food, his throat is extremely painful. The pain passes after 15-20 minutes but has been consistent and not improving. Again, the doctor says it takes time but I think the fact that he isn't seeing any type of improvement week over week is concerning him quite a bit. What has your experience been?

Otherwise, he seems to be doing well. He has regained 2-3 pounds so far (he is down about 45 from the treatment) and his color is returning. He is now able to taste most foods to some degree with chocolate and things like BBQ sauce still not working yet. He is having some pretty profound hearing loss from the cisplatin even though the doctor was extremely aggressive with fluids throughout. We have an appt tomorrow with another audiologist to see which hearing aids may work best for him.

What a journey this has been and continues to be. Praying for good news for my birthday on the 24th which is when his PET scan is. Thank you for your thoughts!

MarineE5

RAKGA,

I am glad your husband and you have crossed the finish line with treatments. As far as your questions, I will try to answer them and others will also add their experiences as well. Our bodies go thru so much during treatments and then we expect to bounce back quickly. We have to listen to our bodies, take in a lot of fluids, calories along with nutrition. We have to be patient, measure improvement not in days, but weeks. Slow and steady gets it done.

The Radiation plays heck on our throats, so I learned to drink and eat everything at room temperature. The cold or hot caused a lot of discomfort for me and I still do this now. My Base of Tongue cancer happened late 2004. Finished treatments early 2005. I would rinse and gargle with the Baking Soda and Salt solution just before eating to numb my mouth a bit and was not concerned about taste for a spell.

I really enjoyed Chocolate before my cancer. Well, it took nearly 2 years before I could taste it again and I have been making up for lost time ever since. I would like to make a suggestion that someone here made years ago. Go to a Buffet about once a month and sample the foods there to see what works or doesn't. His mouth is basically like a new born Baby's with all the Radiation. Picture Microwaving a Chicken and you know what that looks like, that is his mouth and throat.

My Best to Both of You and Everyone Here.

wbcgaruss

Hello, RAKGA, so glad your husband made it through treatment and is now recovering.

MarineE5 covered things for you very well.

This is a slow process as he said and it is measured in weeks and months not days and weeks.

As far as blood counts just give it time they will recover but this is a slow process and your oncologist is not excited about it and he is watching over your husband so just relax and trust in him.

As far as eating and sore throat just give it time and divide food between the PEG and eating to keep nutrition up no need to force it the time will pass and the soreness and he will be eating completely again soon.

Let's see it has not been quite a month since he finished treatment, and he is doing good, after finishing treatment my throat was so swollen from the radiation I bet it was 3 months before I could swallow anything. Everything in the tube, hydration, food, meds.

It is just the time and healing factor, this treatment is Brutal, no two ways about it.

The oncologist nurse told me for my case to figure a year off my life because I would be spending it dealing with this cancer and she was pretty much right on, cancer treatment and recovery is what I did for a year.

A lot of folks that went through this treatment were a year or more until they felt fully recovered. Realistically I would look at about 8 months at least.

Your body is working now to recover and all you need to do is stay as active as possible and get plenty of calories and hydration in.

Wishing You The Best

Take Care, God Bless

Russ

Swoosh13

Hi Rakga,

Glad your husband made it through treatment successfully. My husband finished the same treatment 10/23/23 (so 7 mos). He just had his PET 2/19 and they saw a nodule on one of his lungs but weren’t concerned (thought it was from infection/inflammation) so did a repeat CT of just his lungs 5/21 and it had completely cleared (he did have a sinus infection early Jan so we thought that’s what it showed). Was in to see one of the 3 tumor board drs last week and she scoped him, showed us PET from 7/23 to 2/24 and he is now 7 mos “No Evidence of Disease.” They did lab work and his RBC also was still low, but we were also told they were not concerned and it would get progressively better, so I hope that answers your first question.

He had originally lost 25-30 lbs and regained about 10 but we have also found (as he has Type II Diabetes since 2010) that the weight loss caused both his blood sugar level to go down to a pre-diabetes level and also lowered his cholesterol in a huge way. So very pleased about that.

I liked the going out to a buffet suggestion above. We were fortunate not to have to work at the end of his treatment so (as we both love breakfast) we were going out for breakfast 2-3 times/week, which both helped his taste start to come back as well as the weight.

I cannot comment to the throat pain he’s having but again it’s a slow process. My husband took Extra Strength Tylenol at the end of his treatment as he got mucositis (looked like the worst sore throat you can imagine). Once his treatment ended that healed pretty quickly.

Also maybe there is something your husband’s doctor can give him or to do before eating, not sure if that would help. My husband is trying also to drink at least 2 Stanley 40 oz mugs of water per day, and his doctors are pushing that as well.

It’s a blessing that your husband has you (I remember you writing when he was first diagnosed). Continued prayers for his continued healing.

RAKGA

hi everyone! A quick check in. My husband is doing well overall and his energy is almost completely back. His taste has returned around 85% which is great.

Unfortunately he is still having pain, often fairly intense, while eating. He stopped by his radiation oncologist and she said she was a bit surprised that it has continued.

She has now recommended that he look into hyperbaric treatment and he has his consultation tomorrow. He is also going to see his ENT on Thursday for him to check things out as well.

Of course my thoughts immediately go to the worst option but just keep telling myself that his pet scan a month ago was wonderful.

This is such a roller coaster of emotions. I know you all know as well. I hope everyone is doing well!

wbcgaruss

Hello, RAKGA, thanks for checking in and updating us.

It sounds like your husband has recovered well, with a return of energy and 85% taste is very good and it is possible it will improve a bit more.

There must be an issue causing pain but you don't say where it is or give details but hopefully, this one last issue will get worked out.

It must be some sort of a healing issue if they want him to get hyperbaric Oxygen Therapy (HBOT).

If his PET Scan was clear a month ago he is clear and it is just a matter of more recovery.

It is absolutely a roller coaster of emotions and situations and treatments that is why it is brutal on the patient and hard on the caretaker.

Hang in there he will soon be clear of all issues.

Wishing You The Best

Take Care, God Bless

NEGU (Never Ever Give Up)

Russ

The light at the end of the tunnel.