Challenges with activities of daily living (ADL) and cancer treatment

My sympathy for your symptoms. No ideas about how to help. I have had cancer 3 times (related to genetic abnormality) and the hair loss was difficult. This time I decided to have my hair cut very short. I was considering just shaving my head rather than going thru the hair loss again. My hair dresser was familiar with chemo effects and advised not to wear a wig and just use either baby shampoo or Ultra Swim to remove the residue on the scalp that can come with chemo. Perhaps there is a dermatologist who has worked with chemo patients who could help with your symptoms. Quality of life is so important! Thank you for sharing your story.

Thanks for the suggestions. I have an appointment coming up with my PCP and will see if she has any suggestions, either for what to use, or for a dermatologist who may have some suggestions.
I'll say it again - I am extremely disappointed at the fragmented care approach taken by my nearby (yes, university) health care system, for which I used to work.

I have had 15 rounds of folfironx and use to have very thick hair. The hair loss was very hard to handle but now im resigned to the reality of chemo and bought a wig. I did not shave my head or cut it at all. My hair is now very thin and brittle looking but I can not bring myself to shaving what I have left. I have not heard negatives about wearing wig??

I use very little shampoo and cream rinse(Quai brand) but I wash it only once a week now. I try to brush or comb it very gently. Not sure there is anything else doctors would recommend.

As for your "fragmented care", I know what you mean. My palliative staff have been so helpful, but I didn't get a referral there until I was persistent. Honestly, that should happen BEFORE chemo starts!! Bigger Pancreatic Cancer Centers recommend it. It can be so frustrating with this cancer because many of us are not logistically near these big centers. I feel like I am doing all the research on my cancer treatment/side effects and taking medical articles to the local oncologist. I really do not care if they feel like I am questioning everything they do-its my life. Fortunately, my doctor is open to discussion and hasn't fought me too much on trying different approaches even though she tends to follow what is done or recommended by local radiologists and surgeons.
Early on I did make an appointment with John Hopkins (which is the closest to me-5 hr drive) for a second opinion. I have stage IV and am inoperable. I stay in touch with them as well as Mayo and MSK whenever I see something that would benefit my treatment. PanCan is also a great resource. Unfortunately, you have to advocate for yourself and it can be time consuming and overwhelming with all the medical jargon. I worked in the medical field for years and so I stick to medical sites only.

So glad that this blog is available to help with questions along the way!!

Your courage in advocating for yourself is admirable! I feel fortunate to live within reach of MSKCC, but it is too difficult to go there for everything, so having a local oncologist is important to me. The local oncologist would like me to use local resources. I want to maintain good relationships but it is a little challenging to get cooperation. I have used the patient portal at MSKCC to download all of my reports and give them to the local oncologist. There are problems with the records making it from MSKCC to my local oncologist. I am a little anxious that the cooperation won't continue. If the MSKCC recommendations are not followed, I may need to part company from my local oncologist. This would be difficult.

You are not alone at all with having to be your own advocate. Keep up the good work!

When I was in chemotherapy on Folfirinox regimen my hair thinned more and more as treatment went on but I did not lose clumps of hair or go bald. I probably lost about 50-60% of my hair in a fairly even way. Fortunately, I did not have the dry scalp that promoted itching. I was extremely gentle in washing my hair from the start of treatment, and like you, reduced the frequency a lot. Toward the last half of treat (last 6 sessions or so), I would wash only once every 3 weeks or so and washed the hair itself but barely touched the scalp itself. I also bought a wig which I seldom used but was glad to have and wore on occasion. I think washing less often was somewhat helpful. The stylist woman who I consulted with about wigs and hair loss said it is best to keep about a 1/4 inch of hair rather than shave it because it irritates the scalp less than having the wig sit right on the scalp. I never had to do that so I don't know if that would have worked for me. About the dry scalp you might consult a cancer-knowledgeable dermatologist or stylist who might know of a lotion or ointment to apply to the scalp that might help the dryness and itching. My heart goes out to you. Beth