John done with chemo Oct 19th

[Marthe48]

If you feel like it, let me know how your end-of-chemo experience has gone, cuz John's isn't so hot.

[dixiegrrrrl]

1. I did not know there was a specific "end of chemo" experience

do you feel like elaborating?

Sending you wishes that chemo was successful and now recovery can begin....

[Marthe48]

6. John finished 6 months

he had a continuous pump 5 FU for the whole time, except one week he was off because he was so sick. And every 21 days, he got dosed up with epirubicin and cisplatin. He was going to get a short break from chemo and get the restaging tests, such as CT, PET, endoscopy. He was disconnected Oct. 19th. The next day, he had a fever of 101.4 and spent 6 days in the hospital. He got out on 10/25, fever was gone, but on 10/31, got sudden severe pain when he was breathing in. He was supposed to have the endoscopy that day, but we had to cancel it. He was supposed to have the PET scan 11/2, but he had to reschedule it. The drs say the pain was like pleurisy, and he got over it. We got home after 4 days. He still isn't feeling good. I'm worried about him getting dehydrated.

He's got a j-peg feeding tube, which leaks, and his skin is irritated. We've been in to the surgeon every month since April, except July. The surgeon who was going to do the endoscopy was thinking about replacing the tube, but everything is on hold til John feels better. The drs. gave John antibiotics and an anti-fungal oral medicine after the first hospital. We never see the same doctors, and the new set of hospitalists gave John a different antibiotic and a different anti-fungal, a sulfa drug. It made him so sick, he had to stop his tube feeding. I stopped giving him that and will call the dr. Monday. Still using the anti-fungal cream and cleaning the tube site often.

Anyway, we both thought that after he got off the chemo, he'd start feeling better. But so far, it has been almost the worst he's felt since he started chemo. At the cancer center, they have a bell people can ring when they stop chemo. The chemo has done some good and if he can hang in there through this, I think radiation they are planning will help even more. The cancer is probably not what is causing these problems. His immune system is crap right now. Thanks for listening.

[sinkingfeeling]

2. I didn't take the recommended chemo treatment so can't help you.

Glad he's finished. Does he have to have anymore sessions?

[Marthe48]

7. Probably radiation

If he gets well enough to get the PET scan. It is scheduled again this Monday. TY

[alfredo]

3. Judge recovery by the week, not day to day.

Nausea will continue for some time, but will drop in frequency. Younger you are, the faster the recovery.

My Chemo after effects were masked by the radiation side effects.

[Marthe48]

8. I've read your earlier posts

and everything you've mentioned has been helpful. Some of his side effects are getting better--he hasn't had to use the mouth rinse for over a week. His eyes aren't running. His hair is coming back. The neuropathy is gone. And the hiccups. So he has improved, but it is hard to enjoy the positives, when the negatives are there. Thanks.

[alfredo]

10. Keep us posted.

Tell him to hang in there.

For me, headsets and good music helped me through the tough days. I immersed myself in the music, and I forgot about my afflictions.

[Marthe48]

11. Sports

First the end of the baseball season, and now college football. We were really rooting for Cleveland. We watched the last gameat the hospital. The nurse on duty came in and she was rooting for Cleveland, too. Cubs were ahead. I jokingly said, 'Go Cubs' and she said, 'I think I'm going to have to ask you to leave!' I think she was kidding

We play a healing chakra that we found and that helps. If I think of songs he liked back in the day, I find them on Youtube and play them. Accidentally found out that Randy Newman has a new song out called Putin. Kinda funny

Take care. Hope by now you are feeling better

[alfredo]

13. Thanks.

I was thinking of Randy Newman today and how car talk used "Dixie Flyer" as a segue.

[moonscape]

5. So many variables, cancers, type drugs, dosages, etc etc but ...

I had devastating can't-move fatigue and that significantly lifted in about a month or so, other symptoms lessened earlier. Went on maintenance chemo about 2 months after stopping the 6-month chemo, and now fatigue has returned but at a lesser level.

[slipslidingaway]

14. Can only speak as a caregiver but I do not think there is ever an end date ...

there is only another day, and then another day, and then another and hopefully each day is better than the last. That is something to be celebrated, just take the next step forward without too many expectations from either the patient or those close to the patient. It is a long process which has no specific end date and varies by patient and disease. I am sure that does not help, but all we can do is try to take the next step. I must say that I feel lucky to have an 'easy patient' as an example he knew he had to eat, even if in his words, it felt like he was eating a brown paper bag. He knew he had to move forward. I do believe the role of caregiver is much more challenging when the patient is less willing and I admit that I would not be a very good patient, so hats off to all the good patients!!!

Bottom line, try and go with the flow, push when appropriate and back off when needed, there is no end date to this experience, but many are on a similar path. Reach out for support when needed, remember you are not alone. Those around us sometimes believe there should be a switch, so we automatically believe things should turn around in a short amount of time, but that is not always reality.

All that being said if there are concerns then do consult the docs and do some research on your own, it never hurts to question, but it can hurt to not question. So follow your gut and seek advice.

[Marthe48]

15. Thank you

I told myself early on that I should be anchored- don't go up and down with good days and bad. That is hard to stick to. John is better today. The home nurse said he might be allergic to the sulfa drug, based on his symptoms. John is getting more fluids (through the feeding tube) He's finally had more good hours in a row than bad I come here to this topic on DU because I can get support and I don't have to worry about who I'm sharing with I'm glad I found this spot

[slipslidingaway]

18. It is all too easy to get caught up in the details of the moment ...

I constantly need to remind myself not to grasp one moment in time and worry too much, but it is so hard!!! A few months ago my husband's WBC, hemoglobin and platelets all dropped at the same time. For someone who has undergone two transplants for acute leukemia that was a pretty scary time, all we could do was wait for the next test, which thankfully showed improvement.

We are all probably much better at giving advice than we are following advice

It appears your husband's situation has improved and I hope that trend continues, even if there are bumps in the road ahead. We need to keep in mind the long term trend, but also be aware of an early signs that need to be addressed. Needless to say it is a challenge!

[PennyK]

16. It will just take time.

My situation is very different...breast cancer, chemo, mastectomy, and now radiation and herceptin once every three weeks, but I can see it will take a long time to get past the treatment.

I found a toenail in my slipper today! And I had no clue there had even been an issue with my toenails.

Your guy's had a rough time. I had some sort of an infection near the end of my chemo, and I also had to go in for a blood transfusion. I'm on blood thinner, because my port caused a blood clot. That meant I couldn't have reconstruction right away.
The herceptin is giving me joint pain, and in addition to limping around like an old lady, I get random cramps in assorted joints.

But we're alive. My daughters are coming to me for Thanksgiving, the first time I'll be seeing them since my cancer escapade has started, and it's going to be so good to spend time with them. Hope they don't freak out when they see my hair -- still too short to be called a crewcut.

[Marthe48]

17. Hang in there, PennyK

I forgot already--John got 4 units of blood 10/21-22. Yes, you are alive.

[alfredo]

17. As I say, judge it week to week.

He will start feeling better, little by little. He will wake up one morning and realize he feels better, but the next day, not so good. The lows will not be as low as the weeks pass. Be patient.

Stay strong.