Chemo after effects experience

[Mona123]

My husband received his third round of chemo on October 25th consisting of Carboplatin and Alimta.   He had a tough time after round 2 with side effects and recovery, and was not sure he wanted to do round three.  After a discussion with oncologist, he did agree to do a third round.  

His interim PET scan was a mixed bag...it had some small positive changes in a few affected lymph nodes, his spinal, hip, and illium bone mets lesions were increased in density, and he had several new lymph nodes showing cancer.  So, he was not sure he wanted to continue chemo since the after effects were harsh.

This time, we are now day 9 post treatment.  He has no appetite.  But, he is denying nausea.  Just does not want to eat.  When he eats, he has some spasmodic coughing and sneezing.  His time in bed has increased to 12 to 14 hours--not sleeping, but lying there because when he is still he is not dizzy and the pain is reduced.  To walk around the house he has to stop and hold onto furniture and walls because he is so dizzy.  to get him to MD office for 1 week labs I had to help him dress while in bed, he was in so much pain just standing as well as dizziness. The severity of his symptoms has not abated since his treatment, and I am so concerned that the treatment is worse than the disease.

His oncologist says his condition is "guarded".  He is not pushing him to take treatments, and neither am I.  His primary care has encouraged him to think bout quality versus quantity, and consider palliative care.  Due to his pulmonary fibrosis, diabetes, kidney disease, and heart disease, he is not a candidate for radiation, and he has no mutations for targeted therapy.

I read so much about folks working and taking chemo, lots of stay the course, but not so much about considerations for accepting palliative care and providing comfort.   I'm watching him suffer every.single.day, and seeing the weeks go by with him not getting any quality time before it is time for the next treatment.  

I cannot make the treatment decision for him, and I will support his position.  I would love to hear from others who have had really hard times with side effects and managing day to day life.  

 

[LexieCat]

Hi, Mona,

Sorry to hear your husband is having such a rough time of it. You seem to misunderstand what palliative care is--it's simply care to relieve the symptoms of the disease or side-effects of treatment. You can get palliative care any time you need it--you don't have to be forgoing treatment. It isn't hospice. People with early stage disease can take advantage of palliative care to relieve symptoms like pain, nausea, coughing, etc.--all while receiving chemo or other treatment. The goal is to make the patient more comfortable. 

If your husband can get relief from a palliative care practitioner, he may find the treatments far more tolerable. It's certainly worth a shot. 

[Judy M2]

I waited until after chemo and radiation were completed, and I was having serious side effects, to engage palliative care. At the time, I didn't know it was an option. But my palliative care team really listened to me and were very helpful. They would have come to my home but the pandemic was just starting. I can't recommend this specialty enough. 

[Steff]

Hello Mona,

I am not a cancer warrior, just a caregiver, but have had a similar experience to you.  My mom had some pretty bad side effects from the chemo received with both lung cancer diagnoses.  While it was tough on her, she knew that the side effects were temporary.  She also knew that the best way to beat cancer was to stick with her initial treatment plan as long as possible.  Luckily, she was tough enough to make it through both treatment plans, but not without lots of bumps in the road.  Fast forward a year or so after her final lung cancer treatment - my mom was then diagnosed with leukemia.  Treatment for lung cancer was a walk in the park compared to the awful treatments for leukemia.  She gave up 5 months of her life to attempt to beat leukemia.  It was 5 months of hell.  She was in the hospital 30 days at a time - 3 times.  During her time in the hospital, she met with palliative care docs.  They did wonderful things to try to assist with the side effects of not only the chemos, but also her state of mind related to being told she will likely die within a year.  Palliative care docs can offer options as aggressive as the patient wants and can be involved for short or long periods of time.  Like others here, I cannot say enough great things about palliative care.

All of that being said, my mom took Carbo and Alimta (along with immunotherapy) during her lung cancer recurrence.  The chemo hit her pretty hard, but did not result in the extreme side effects you are noticing with your husband.  I immediately want to jump to the conclusion that there is something more going on.  How are his blood tests looking, specifically his red and white cells?  I ask this because my mom experienced many of the symptoms you are describing during leukemia treatment, when her red and white blood cells were depleted.  There could be an easily treatable explanation other than chemo side effects that is causing his current state.  

Hope some of this helps.

Take care,

Steff

[Mona123]

Steff,

thanks for relating your experience.  

I monitor all of his labs, and he has been holding his own with his cells.  His hemoglobin has been hanging at 10, but that has been for several months, so nothing has changed that would explain his response to the chemo.  His electrolytes are off a bit, but not enough to cause the type of reactions he is getting.  Platelets are doing what they do when getting platinum product, but again, not awful.  WBC flies all over the place depending on when he had Nuelesta. 

  We do have a palliative care physician on our team.   I think his experience is complicated from the several chronic diseases that he has, and compounded by his co diagnosis of pulmonary fibrosis.  So many options are unavailable to him due to his other medical conditions.

We will get through one day at a time, and will begin having some discussions about quality versus quantity.  He is not even receiving full doses of the chemo because of his kidney disease and his inflammatory response due to the pulmonary fibrosis.  There is very little research about lung cancer with pulmonary fibrosis.  I have asked for research information from Moffit Cancer Center, as well as his pulmonologist.

At this time, his primary care MD and two of four specialists are taking about hospice referral for him.

thank you for relating your experience!

 

[Tom Galli]

Mona,

I understand post chemo pain. I had 18 infusions of taxol and carboplatin and each caused severe joint pain. It would come on day 2 after the infusion and last till day 4, but those two days were a nightmare. But, unlike your husband's situation, my disabling pain departed after day 4. I wonder where your husband's pain symptoms are? I note your husband is taking Altima instead of Taxol. Taxol is know to produce neuropathy symptoms and joint pain. Altima is less so.

I understand how difficult chemo can be given your husband's many medical conditions. Your husband's oncologist pronouncement of guarded is indeed serious.

I had a time in treatment where chemotherapy was no longer working. Eighteen years ago, there were no alternatives. My oncologist hoped to treat my disease as a chronic condition by continuing chemotherapy but that was the only alternative. After hearing that, my wife and I started investigating hospice treatment. We got provider recommendations from my oncologist and made a visit to the hospice provider to understand the elements of care. I was comforted by the fact that I felt well enough to perform this visit with my wife so that we could talk together about the course of treatment and thus relieve her of having to make such a significant decision without my input. You might consider consulting with a hospice provider.

Yes I do close all my messages by using the words stay the course. What is stayed, in my view, is living life, and my wish for every lung cancer patient is to live it to the fullest until it ends. I benefited from grand good fortune. A treatment appeared that dramatically gave me a future. But my lesson learned is that I had gaps in treatment where I could have enjoyed myself. I could have traveled, seen family, enjoy my hobbies, indeed any number of things. Instead, I frittered that time away in high destress worrying about things I had no control of. That was a vast mistake, and I try and pass that lesson along to those affected by this horrible disease. Every moment counts...

I do hope your husband's pain is relieved, quickly. There is no joy with pain!

Stay the course.

Tom

[Mona123]

Tom,

What wise words you communicated!

We have had a hospice consult about 2 months ago...too early for us, but my husbands VA primary provider is a palliative care physician, and she recommended that we know our options before we needed them.  Today is day 10...still having moderate to severe symptoms..dizzy, no appetite, GI disturbances, profound fatigue.  Talk about tough decisions....we are at a point where the choice to continue, based on our current experience with his treatment, is seemingly worse than the disease.    My main focus is staying close by without hovering,  getting a smile or a laugh every day, looking for opportunities to make memories together.    I wish I could absorb some of his pain and suffering and give him a break.   This disease sucks!