Avastin - painful skin after two years

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jp81
Posts: 27
Joined: Sun Jun 04, 2017 4:45 am

Avastin - painful skin after two years

Postby jp81 » Tue Aug 11, 2020 9:35 pm

Hi everyone, my mom has been on Avastin and Xeloda for more than two years now (28 months); after her Para-Aortic node recurrence (as in the sig below). She's tolerated the combination somewhat well, but the side effects are accumulating. Some side effects are cosmetic (dark skin), some are moderate (tiredness, diarrhea etc) and some are more serious (blood pressure, painful skin).

The BP is controlled with medication, but the increasingly painful skin is presenting difficulties. The doctor's advice is to continue Avastin + Xeloda until it becomes intolerable.
Does anyone have a suggestion for this? Or should we think about reducing or stopping Avastin? We're hesitant because it has worked well for her.

Thanks in advance
Dear Mom 58yrs, Stage 3 RC (T3CN2M0), CEA 9
MSS G12D
6.5cm from verge, 30mm in Mesorectal Fascia
Xeloda+Radiation 06/17
Surgery 08/17, CAPOX 5 rounds (plan 6, but blood counts low)
CEA 6, para-aortic node 01/18
CEA 5.6, PET 1 malign PALN 02/18
Pre-op CEA 4.8; Surgery (open) - 1.6cm Inferior Mesenteric Node - 26/02/18
FOLFIRI+Avastin from 03/18 to 09/18 (12 cyc)
Clean PET - 23/05/18
Xeloda+Avastin 18/11/18
CEA 3.6 06/11/18, 4.5 17/03/20, 3.6 26/01/19, 4.2 02/19, 5.1 11/04/19, 4.11 03/01/20, 3.17 04/11/21

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juliej
Posts: 3114
Joined: Thu Aug 05, 2010 12:59 pm

Re: Avastin - painful skin after two years

Postby juliej » Wed Aug 12, 2020 5:59 pm

I feel for your mom. I was on that combo for about 2 years so I know what it does to your skin. The problem isn't the Avastin; it's the Xeloda. It causes a condition called "hand-foot syndrome" (HFS), which is very painful. My hands and feet were red and swollen and even my toenails came off! :shock:

Some investigators have observed that taking vitamin B6 (200 mg) can help HFS so you might talk to her oncologist about that possibility. It seems to work for some people and not others. In the meantime, follow these guidelines:

Avoid long exposure to hot water such as washing dishes, baths, etc.
Don't wear dishwashing gloves since they will hold heat against your palms.
Avoid using garden tools or household tools such as screwdrivers (any situation where you are squeezing your hand).
Avoid using knives to chop food because of the pressure of holding the handle.

These are the things that helped me:

Placing the bottoms of my feet or the palms of my hands on an ice pack or a bag of frozen peas. Use it on and off 15 min at a time.
Using a heavy hand lotion such as Aveeno, Udder Cream, Bag Balm, Eucerin, etc.
Wearing shoes a half-size larger to accommodate my swollen feet and prevent rubbing. (Keen sandals worked great!)
Putting my feet up whenever and wherever possible.

That said, if it's horribly painful, I would talk to her oncologist about reducing the Xeloda, or even stopping it for a few weeks. Xeloda stays in the body for up to 6 weeks so that would provide some chemo while her hands/feet were recovering.

Give her a hug from me!
Juliej
Stage IVb, liver/lung mets 8/4/2010
Xelox+Avastin 8/18/10 to 10/21/2011
LAR, liver resec, HAI pump 11/2011
Adjuvant Irinotecan + FUDR
Double lung surgery + ileo reversal 2/2012
Adjuvant FUDR + Xeloda
VATS rt. lung 12/2012 - benign granuloma!
VATS left lung 11/2013
NED 11/22/13 to 12/18/2019, CEA<1

jp81
Posts: 27
Joined: Sun Jun 04, 2017 4:45 am

Re: Avastin - painful skin after two years

Postby jp81 » Wed Aug 12, 2020 11:54 pm

Thank you so much, Juliej. That's very helpful advice. (And I'll give her a hug for you).
Dear Mom 58yrs, Stage 3 RC (T3CN2M0), CEA 9
MSS G12D
6.5cm from verge, 30mm in Mesorectal Fascia
Xeloda+Radiation 06/17
Surgery 08/17, CAPOX 5 rounds (plan 6, but blood counts low)
CEA 6, para-aortic node 01/18
CEA 5.6, PET 1 malign PALN 02/18
Pre-op CEA 4.8; Surgery (open) - 1.6cm Inferior Mesenteric Node - 26/02/18
FOLFIRI+Avastin from 03/18 to 09/18 (12 cyc)
Clean PET - 23/05/18
Xeloda+Avastin 18/11/18
CEA 3.6 06/11/18, 4.5 17/03/20, 3.6 26/01/19, 4.2 02/19, 5.1 11/04/19, 4.11 03/01/20, 3.17 04/11/21

Siti
Posts: 269
Joined: Thu Aug 01, 2019 10:58 am

Re: Avastin - painful skin after two years

Postby Siti » Fri Aug 14, 2020 4:33 pm

Hi jp81,

Sorry for not reverting sooner — I just logged on.

My husband had the same side effects till the point he was unable to walk as his feet were burning and peeling. His oncologist switched Xeloda to Teysuno (S-1), a Japanese drug developed in 1999 and widely used in Asia but only approved in Europe in 2011. It contains tegafur, a prodrug of 5-fluorouracil (5-FU), and two modulators of 5-FU metabolism, gimeracil and oteracil.

According to his oncologist, it’s equally as effective as Xeloda with less side effects. My husband started his cycle in April with significant improvements on both his hands and feet. Though the diarrhoea is worse but only at the end of his cycle for a few days. He usually takes loperamide with psyllium husk to control the diarrhoea.

We live in The Netherlands and I’m not sure where your mom is based — if she’s in Europe/Asia, she’d have access to it.

I hope this information helps.

Regards
Siti
DH (54) DX on 5/7/19
Sigmoid|G3|LN:30/31|MSS|WT KRAS, NRAS, BRAF
7/19 PET distant LN para-aorta neck hip (0.5-1.5cm)
7/19 Lap resection
26/8 to 20/12/19 CAPEOX+Bev 7x
6/11/19 CT 3 cycle LN shrunk
1/20 Cap+Bev
4/20 TS-1+Bev due to bad HFS
NED 4 years
8/23 PET recurrence chest LN growing since Feb. CEA May(4.5>5.1>5.9)
9/23 Stopped Bev, CEA Sept(8.7) Radio 17x
11/23 PET 1+ supraclavicular LN, CEA (3.4>2.5)
12/23 Lymphadenectomy
1/24 Narrow margins, 1/5 +LN, 1.4cm +tissue, TMB (19)

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CRguy
Posts: 10473
Joined: Sun Feb 10, 2008 6:00 pm

Re: Avastin - painful skin after two years

Postby CRguy » Fri Aug 14, 2020 9:40 pm

jp81 wrote:...and some are more serious (blood pressure, painful skin)....
The BP is controlled with medication...

Both Juliej and Siti have given you some excellent information for your Mom's situation !
I had relatively minor issues with Xeloda as a monotherapy or with chemoradiation, however I can see it being additive in side effects with some other meds :twisted:

As JJ mentioned, dose reductions are ALWAYS on the table for discussion ... and / or interval changes.
As Siti mentioned, alternative 5-FU derivative / pro-drugs etc. are also always an option where available.

My addendum here relates to the BP meds Mom may be on :

My local cancer agency is at the leading edge of "personalized oncogenomics", wherein a patients "tumour" is tested against a number of known drugs which may be used for any other purpose = NOT necessarily a chemo drug, to see if any of the tumour's genetics / metabolic pathways can be affected by said drug, linked here : BCCA POG program updated

The reason I mention your Mom's BP meds IS ..... one very startling result was achieved by using an ARB ( angiotensin receptor blocker ) against a met in a patient who had failed other treatments.

Not saying using an ARB would necessarily work for your Mom ... BUTT ...

asking the Oncs the question about "personalized oncogenomics" and its applicability to her situation, I feel is certainly worth the effort !!
AND if she needs an ARB anyway ... why not use one which has been shown to have certain "anti-cancer" applications ???

JMO

Cheers and best wishes to you and your Mom
CRguy on the Journey
Caregiver x 4
Stage IV A rectal cancer/lung met
17 Year survivor
my life is an ongoing totally randomized UNcontrolled experiment with N=1 !
Review of my Journey so far

jp81
Posts: 27
Joined: Sun Jun 04, 2017 4:45 am

Re: Avastin - painful skin after two years

Postby jp81 » Fri Aug 14, 2020 11:54 pm

Thanks Siti and CRGuy for valuable advice. I'll check if the Xeloda alternative is available (and covered by our insurance) - that sounds like a good option.
BCCA POG program and ARBs seem very interesting. But I'll have to check about availability (we don't live in the US).

Thanks again and wish you all the best.
Dear Mom 58yrs, Stage 3 RC (T3CN2M0), CEA 9
MSS G12D
6.5cm from verge, 30mm in Mesorectal Fascia
Xeloda+Radiation 06/17
Surgery 08/17, CAPOX 5 rounds (plan 6, but blood counts low)
CEA 6, para-aortic node 01/18
CEA 5.6, PET 1 malign PALN 02/18
Pre-op CEA 4.8; Surgery (open) - 1.6cm Inferior Mesenteric Node - 26/02/18
FOLFIRI+Avastin from 03/18 to 09/18 (12 cyc)
Clean PET - 23/05/18
Xeloda+Avastin 18/11/18
CEA 3.6 06/11/18, 4.5 17/03/20, 3.6 26/01/19, 4.2 02/19, 5.1 11/04/19, 4.11 03/01/20, 3.17 04/11/21


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