Alimta, catheter, fluid overload - 1290213

bh
Posts:66

Mom's chemo was cancelled last week as she looked and felt terrible. She was sent to the pulmonary specialist who did a thoracentesis (second in less than a month) and drew 700 ml of "bloody" fluid. He suggested a catheter (feedback?) instead of pleurodesis which he didn't think would work as it has been 5 1/2 years since mom's cancer diagnosis and he felt the pleural membrane had thickened to stick together with the talc procedure.
The onc told me yet again that the hospital showed mom as having CHF and she could not give mom chemo but asked me to consider palliative care. She wants to meet with us in two weeks to discuss treatment options. Mom's stat chest x-ray showed no fluid but the pulmonologist saw it on the ultrasound. Last January when mom was hospitalized with fluid overload, the onc had told me to contact her right away and that she would start Alimta as mom's fluid overload was malignant pleural effusion. This year, onc insists it is CHF. We had an echo study done 10 days ago, mom's ejection factor is 60% which is normal according to the cardiologist. The pulmonologist started off by saying mom has CHF but then read the echo report and after the thoracentesis, wrote down malignant pleural effusion. He did say we need mom's expansion rate as well. Her BNP numbers are normal.
I have requested mom's medical reports dating to cancer diagnosis as the onc told me I should let the onc make the decisions and not play doctor. Mom has tolerated Alimta very well since 2011 and I am not sure why this sudden reluctance to treat her. While I understand old people presenting to the hospital with fluid overload need to have pneumonia and CHF ruled out (as hers was), the cancer diagnosis is written all over her medical report and she has been treated and responded marvelously to Alimta since 2011. Requesting a cardio consult to ask about the expansion rate but want to go into the meeting with the onc fully prepared. Any suggestions will be gratefully appreciated.

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bh
Posts: 66

We want to transfer mom's care to either UCI, UCLA, or City of Hope. I am going to try all 3 to see who will give us the earliest appointment. Any recommendations between the three cancer centers or doctor recommendations would be greatly appreciated.
Thank you.
Bee

JimC
Posts: 2753

Hi bh,

Whether you transfer your mom's care or at least get a second opinion, I think any of those three institutions would be a fine choice. From UCLA, Dr. Edward Garon and Dr. Jonathan Goldman have contributed to the GRACE site and are leading experts in the field, as is Dr. Karen Reckamp from City of Hope Cancer Center in Duarte, who has also been a GRACE contributor.

Good luck getting some answers and putting a treatment plan in place.

JimC
Forum moderator

bh
Posts: 66

Thank you so much, Jim. Will try all 3 doctors to see if we can get an appointment soon. Anyone to recommend at UCI? Is the catheter a good idea?
Ever grateful for taking the time to respond and give so generously of your time.
Regards,
Bee

catdander
Posts:

Hi Bee,

I'm so sorry to hear about your mom's continued problems. It's very possible a pleurodesis won't work and an indwelling catheter may be a better option to keep the fluid drained and your mom comfortable. If possible she can wait until she sees her new doctors before making a final decision.
Don't worry too much about the comments about letting the doctor make the decisions. You've moved on by looking at other oncs who appreciate the new patient/carer who participate in care decisions.

As far as palliative care that just means comfort care and should be a part of her ongoing treatment. Palliative care is different from hospice care. Hospice care is comfort care without anticancer treatment and is the right decision for someone who doesn't want further anticancer treatment or has exhausted anticancer treatment options. Some centers have palliative care specialists who work hand in hand with oncologists during all phases of cancer care. However most oncologists still find themselves as both palliative care and anticancer care providers. Either way comfort care has been shown to be very important in maintaining not only quality of live but also longevity.

I don't know anyone at UCI but if they have a lung cancer specialty they will have excellent options for your mom's care.

Keep us posted and I'll keep you in my thoughts.
All best,
Janine

bh
Posts: 66

Hi Janine, thank you for the calming words. Great idea to wait to make the decision about the catheter until after the consult, will do just that. Mom has a fever and looks like the fluid is back. Just returned from her primary care, she is on stronger antibiotics. No pneumonia. Was able to get a consult with Dr. Ou at UCI for next week. Trying to also get a second opinion with Dr. Reckhamp for next week and Dr. Garon at UCLA. Thank you so much for suggesting consults at a teaching hospital.
Warm regards and heartfelt thanks.
Will keep you posted.
Bee