Postby WifeOfMike » Mon May 12, 2014 2:52 pm
Started this club under 58 yr old Hubby's signature in hopes of him one day lurking/ researching/ posting. Should have known better after 34 yrs, he will NEVER do this himself. Throughout his ordeals, it has been me who has the courage to research, monitor & inform him as to what to TRY & expect, as BEST as I humanly can. I want to THANK all of you, for being a guide to us in the past. Now I feel it is my turn. Throughout chemo, he has been able to tolerate all side effects like a champ, keeps up a stationary bike 7 mile routine & healthy diet/ appetite & normal 6 day/wk work schedule. We have kept secret his disease to all except family & a few close friends, and he has had nothing but compliments from outsiders, as to his miraculous healthy appearance (except for the annoying rash Erbitux caused sporadically). HE IS MY HERO.
I will try & describe his ordeal with Stivarga(if you will allow me, as a caregiver/ not patient). Hubby started line 3 Stivarga full dosage (4 pills) 12/3/2013. By 12/17 he had almost imperceptible light pink on 1-2 areas of bottom of foot, by 12/20 he was full blown grade 3 nasty, black/ green/ orange/ yellow blisters (again, shocking/ painful) covering the soles, sides of feet & between toes & was bedridden thru Xmas. Having tried, as usual to research everything about each chemo cocktail/ AES..... I had NO idea HFS would come on like a freight train. His head nurse had to look up on the computer to compare his feet with photos, something that shocked us BOTH! It is ONLY then both 1st & 2nd opinion Dr's let us know MOST patients cannot tolerate full dosage! Immediate stoppage of Stivarga until all signs of HFS gone.
After fact UCSD Dr's nurse had following advice. PLEASE heed this, as it may save you or your loved one excruciating pain. Use these as PRECAUTIONARY measures, NOT chasing the dragon. Avoid hot water/friction as best as possible. Soaking feet (or hands if an issue) in COOL water 3X's/daily reduces blood to areas (it is where capillaries are closest to top) as medicine tries to escape & come to surface. Slather heavy emollient creams & let air out as much as possible/ elevate on pillows. DON'T RUB/ massage... it causes friction! I got thick fluffy socks (for diabetics, with WIDE tops to get over painful blisters), lambskin slippers for initial care while bedridden to amble to potty). Jell inserts for his sandals & tennis shoes (when he could stand to finally get them on). When he returned to work, he slathered up mornings (and he hates cream), put on sandals/ jell pads, did another soak/ slather mid day & immediately after work, where I insisted he stay off feet as much as possible until following morning. NO bike, no standing at work (we own our own biz) and we feel working and staying as close to his normal routine is helping keep his mind active/ ward off depression.
Several weeks later after multiple debates with Dr's/ nurses, he started back on Stivarga 3 pill dose/ day. Although he did have a couple of incidences of light pink between 2 toes, 1 on his foot & a callous like growth on palm between 2 fingers (again capillaries/ friction play a part), he was able to maintain 3 pill dosages throughout his 4 month/ 3 day Stivarga routine, until we heard those dreadful words " the disease has progressed and we have to go to the next level of CRC playbook". I guess we (hopefully) bought another sliver of the time clock and pray did not do any more long term damage to the rest of his healthy organs/ cells than can be avoided. I must confess several major fubars occurred with his Stivarga routine. NO baseline CT was established. We had 1 month fiddling with 2nd opinion of disease/ OK for Stivarga as line 3, between Line 2 and Stivarga. Last CT scan was a nightmare, taking another month and 4 conflicting reviews of CT scan results, but CEA rose and both Dr's agreed it was time to move on.
Vicki (the wife of Mike)
Last edited by
WifeOfMike on Wed Jul 23, 2014 1:22 pm, edited 1 time in total.
Bad Ass WIFE
Hubs: CRC IVA,T3, N0, M1A
Resect/LN Mets 10/12
Folfox4/Avastin 11/12-5/13
Folfiri/Erbitux 6/13-10/13
Stivarga 12/13-4/14
Trial 4/14-/14
Trial 8/14-11/14
HOME Hospice 11/17/14
Guardian Angel 1/1/15
Cost of HOPE? PRICELESS